Coping in college with MS: a thesis

by Rebecca Schwartz

Chapter One: Literature review

Fifty percent of North Americans will experience chronic health problems during their lifetime. Examples include Diabetes, Rheumatoid Arthritis, Asthma, Muscular Dystrophy, and Multiple Sclerosis (Coyne, Lyons, Ritvo and Sullivan, 1995). These illnesses have become more common especially since the average life expectancy has increased (Weitz, 1996). Living with a chronic illness means many things, including overcoming stigmatizing judgments, intrusive questions and feelings of diminished worth (Charmaz, 1991). Living with chronic illness occurs within a specific context, one that is dependent on age, class, gender, occupation, marital status, as well as the type and extent of disability (Charmaz, 1991). Even if an illness leaves no visible marks, the illness remains a constant presence in the consciousness of the ones who are forced to live with it. Illness has a profound impact on emotional health, self image, relationships, work habits, aspirations and ones overall outlook on life (Register, 1987). From experiencing illness, both priorities and perspectives change (Charmaz, 1991). “Within a culture which places a high value upon power, control, productivity and mobility, disability is a failure to meet societal standards” (Duval as cited in Branwell and Kavanagh, 1997:417).

Multiple Sclerosis (MS) is the most common neurological illness (Sullivan, 1997). Approximately one-third of a million Americans suffer from the disease, and every week, about two hundred new people are diagnosed. MS is a chronic and often disabling disease of the central nervous system, which includes the brain, spinal cord and the optic nerve. The disease is unpredictable and can be crippling. Symptoms include: abnormal fatigue, tingling, numbness, burning sensations, impaired vision, loss of balance and muscle coordination, slurred speech, tremors, stiffness, bladder and bowel problems, sexual dysfunction, short- term memory loss, mood swings, and in severe cases, partial or complete paralysis (National Multiple Sclerosis Society, 1997). Multiple Sclerosis not only affects a person physically, but can affect a persons memory and other brain processes known as cognitive functions. Forty-five to sixty percent of people with Multiple Sclerosis develop measurable changes in their cognitive functioning. These changes are usually mild and are confined to certain functions such as memory and concentration (Fischer, 1995).

These symptoms can come and go, appear in any combination and vary from mild to severe. There is no way to predict when, and even if, attacks of the disease will occur. No two people with Multiple Sclerosis have the exact same problems (OMalley, 1996).

Multiple Sclerosis is an autoimmune disease in which the bodys immune system causes illness by mistakenly attacking healthy cells, tissues or organs that are essential for good health. MS is caused when inflammation and breakdown occur in the myelin, the protective insulation surrounding the nerve fibers of the central nervous system. Myelin is destroyed and replaced by scars of hardened sclerotic patches of tissue. These lesions are called plaques and appear in multiple places in the central nervous system. During an attack, inflammation occurs in various areas of the central nervous system in the random plaque patches. When the myelin is damaged, neurological messages can either be slowed or completely blocked, leading to diminished or lost functioning (National Multiple Sclerosis Society, 1997).

There are four clinical courses that Multiple Sclerosis tends to take. The first is a benign sensory form, where attacks are characterized by sensory symptoms and/or optic neuritis (inflammation of the optic nerve). These people generally do not have severe long-term disability (National Multiple Sclerosis Society, 1997). The second type is relapsing-remitting which is characterized by partial or totally recovery after attacks. In secondary-progressive MS, the third type, there is a relapsing-remitting course which later turns steadily progressive. Finally, the smallest minority of patients have primary progressive MS, in which they have a progressive disease from the onset and the symptoms generally do not subside (National Multiple Sclerosis Society, 1997). Two-thirds of MS patients remain functional after twenty years, and seventy-five percent may never need to use a wheelchair (Cichoke, 1993). It is impossible to tell how MS will affect any one individual, although there are some clinical signs that suggest a more or less severe disease in the future.

Multiple Sclerosis is more likely to affect certain people depending on their race, sex, age, and genes. MS occurs most frequently among Caucasians, especially those of Northern European Ancestry. Twice as many women as men have Multiple Sclerosis, and the onset of symptoms usually occurs between the ages of twenty and forty (National Multiple Sclerosis Society, 1997). Because of the fact the MS affects women in their childbearing years, pregnancy is of great concern to many patients. There is no evidence that the disease impairs fertility or leads to an increased number of miscarriages, stillbirths or congenital malformations. MS appears to have a protective effect on pregnant women. Most experience a decrease in exacerbations during pregnancy, but the risk of a relapse post partum is relatively high, at fifty percent within six months (National Multiple Sclerosis Society, 1997). The rate of transmission from parent to child is approximately 1-5%. Despite many years of research, the cause of Multiple Sclerosis remains unknown. It is believed that heredity may play a role because the average person has a one in 100,000 chance of developing the disease, while those with close relatives with the disease have a one in 100 to one in 50 chance (Eastwood, 1996). It is also believed that MS may be a virus. Evidence has been gathered in 1998 that HHV-6, a virus, may be present in MS brain lesions and active during relapses. However, at this time there is insufficient evidence that HHV-6 or any other virus triggers the disease (Multiple Sclerosis Society, 1997).

Multiple Sclerosis is very difficult to diagnose, and as of now no cure has been found. Elusive symptoms that come and go may indicate a number of different disorders. There is no single laboratory test to prove or rule out MS, however, physicians rely upon several tests such as Magnetic Resonance Imaging (MRI), spinal tap and evoked potentials. These show if there is a slowing of messages in the various parts of the central nervous system. All of these have helped in definitive diagnosis. Presently, there is no cure for Multiple Sclerosis, or one single medication that will relieve all of its symptoms. However, many medications can be used to control symptoms, and in some cases shorten attacks and slow progression of the disease. The biggest breakthrough treatment was approved by the Food and Drug Administration on May 17, 1996 called Avonex. Avonex is used to treat relapsing forms of the disease. It is injected intramuscularly once a week. It is the only therapy proven to slow progression of disability, as well as reduce the number of flare ups, or exacerbations of the disease (Biogen, 1998).

There are many phases that people go through upon initially learning that they have any type of chronic illness. These include diffuse symptoms that come and go over a period of time, as well as attempts to find psychological or circumstantial causes for these symptoms. Other phases include believing that the diagnosis is false or only partial, and a determination to make symptoms disappear by changing habits or behavior. When first experiencing chronic illness, relationships with family and friends will become strained and many friendships will be lost. Changes will also occur in mood and personality, as the patient may become depressed, irritable or anxious. Finally, there is relief at having an answer that seems definitive (Register, 1987). Giving the illness a name allows some control over its place in the individuals life.

A major time of stress for patients with Multiple Sclerosis specifically is when their symptoms are being investigated (Murray, 1995). This disease can forever alter the lives of young adults. Most see themselves as vibrant and healthy, with an element of wholeness, invincibility and immortality. This disease is a welcome into a harsh and unexpected reality. However, most people experience a sense of relief with diagnosis, because they feared that their symptoms were the result of a fatal illness or psychological instability (Miller,1997). One woman remembers her symptoms as being perplexing before they were alarming, “Just telling me that I had a known disease made me feel better” (Ottenberg, 1978:22).

Despite feeling a sense of relief upon receiving a diagnosis, a lot of people do not know what their diagnosis means at first (Charmaz, 1991). When one is diagnosed with MS and begins to learn about the disease, the most frightening prospect to that individual is that he/she imagines him/herself in a wheelchair in the near future (Register, 1987). “It was almost like being in a dream world. You never really believe that you have something that could degenerate to where you cant walk. It was outside of me. I couldnt relate to it. I believed it-but I didnt believe that it would last” (Charmaz, 1991:16). However, this expectation is “grossly inappropriate” for those with relapsing disease (Miller,1997). The relapsing form of the disease is the most common, with 70% of all cases falling into this category. People often try to keep illness at the margins of their lives and outside the boundaries of their self concepts (Charmaz, 1991). “I felt like it wasnt really happening to me. I felt like there was part of me that was experiencing it, and there was another part sitting on the outside watching what was going on with me. There was a real unreality about the whole thing” (Register, 1987:16).

When first diagnosed with a chronic illness, many people believe that it is temporary and that they will recover. Illness is viewed as something to struggle against and defeat. They will adapt to the sick role since they plan on getting better and do not believe that they are in need of altering their conceptions of self (Charmaz, 1991). The sick role, as developed by Talcott Parsons, has four major characteristics. The first is that illness provides exemption from routine responsibilities. Secondly, a persons illness is not deliberate, meaning that sick people are not responsible for their illness, rather the illness is something that has happened to them. Another component of the sick role is that the sick person must want to be well, and people feigning illness to escape responsibility do not have legitimate grounds for doing so. Finally, an ailing person must seek competent help and has an obligation to do so. The ultimate goal of the sick person is to get better so that he/she can return to their routine.

Beyond adapting to the sick role, most patients go through five stages after diagnosis as identified by Elisabeth Kubler-Ross in her extensive research on death. It has been found that patients diagnosed with a chronic illness experience the same stages that patients diagnosed with a fatal illness experience. They include: denial, anger, bargaining, depression and finally, acceptance (Murray, 1995). Denial is one of the most significant phases, because one often reverts back to it throughout the course of their illness. Denial is “an unconscious psychological defense used to avoid thoughts and feelings that are frightening and distressing” (Stoneham, 1995). Often, people who suffer from chronic illness do not admit that they have special needs. (Charmaz, 1991). Many chronically ill people will push themselves through their usual schedule and then attend to their illnesses later, as time warrants. (Charmaz, 1991). It is through attempting to manage their regular activities that ill people discover the meaning of their altered bodies (Charmaz, 1991). It now becomes difficult to adapt an ideal persona when ones body is imposing a different one on him/her (Register, 1987).

Denial can be considered an adaptive strategy if it prevents the individual from becoming overwhelmed with the stress of illness and disability. Denial may help people adjust gradually to the changes that their diagnosis brings. In the early stages of chronic illness, denial may give the individual the time needed to absorb difficult information about their illness, and learn how to cope (Sullivan, 1997). People involved in the life of the chronically ill person may mistake certain behaviors as denial. Definitions of illness may merge with beliefs about how strong ones motivation may be, and such beliefs may be mistakenly judged as denial (Charmaz, 1991). For example, a woman may want to go on a camping trip even though she is not feeling well. She may decide to push herself, because she possesses the motivation and understands her illness. To her friends, it may look like she is trying to prove something to them or is in denial of her illness, when she merely is doing something she wants to do.

After denial often comes anger, bargaining, resignation and acceptance. During the second phase, anger, the person accepts the fact he/she has an illness but views it as a great injustice. Thirdly is bargaining or negotiation, the attitude that their situation may not be inevitable and that a bargain might be struck with God to reverse it. The fourth stage, resignation, is usually accompanied by depression upon the realization that the individual is permanently ill. Acceptance is the final step of adjusting to a chronic illness. Acceptance means agreeing to ones status without struggling, sorrow, envy or anger (Charmaz, 1991). The most difficult part of acceptance is dealing with a loss of control (Register, 1987).

One of the first questions that newly diagnosed people ask is “why me?” “This poses a dilemma: either you are special and have been given a unique opportunity to transcend ordinary human existence, or you are deficient and have been given a penance to pay in order to atone for your deficiency. The why me? question has no satisfactory answer ” (Register, 1987).

If you believe that you have been willfully afflicted by a punitive God, you have to admit wrongdoing and make recompense. If you believe your illness is part of a divine plan you get frustrated about not seeing the plan and unwittingly taking wrong turns. If you believe that misfortune falls arbitrarily you may be left with hopelessness: If there is no one to blame and no one to appease, where do you turn (Register, 1987:29)?

What this all comes down to is that no matter how much one reminds him/herself that their lot is no worse than that of many others, the fact is that it is not just anyone who has been touched this time. “It is YOU” (Register,1987:30).

Living with chronic illness involves questioning ones identity and redefining ones concept of self. Identity questioning involves several things. First, individuals with chronic illness have to acknowledge who they are in the present. Secondly, they have to compare their present identity with that of the past identity, and finally, one must speculate on what identity they will have in the future (Charmaz, 1991). When diagnosed with a chronic illness, people often feel a loss of self. Loss of self means having former attributes and feelings taken away from you which make up ones self concept. It also means losing the self-definitions with which one had most identified. For example, a lawyer may entirely define himself by his profession. However, due to a chronic illness, he is no longer able to work and experiences a loss of self and a need for redefinition. As a result of these changes, the self grows increasingly vulnerable to demeaning images reflected by others (Charmaz, 1991). Such images include those of pain, hospitals, dependence on others and an overall inability to enjoy life.

Multiple Sclerosis, like any potentially debilitating disease, triggers dilemmas about self-worth and limitation. Dropping an object takes on magnified meaning. To the ill person, it means much more than miscalculation or clumsiness. It symbolizes a diminished self. Tremendous frustration, anger and despair may result from such an incident (Charmaz, 1991). “This disease has a mind of its own. It has a knowledge of its own, a process of its own. This disease occupies your body like some alien force and undermines your will” (Register, 1987:34). Most patients in a study by Miller (1997) experienced such hopelessness at some point in their illness. However, most felt that with time, their illness had a positive effect on their life. “We like to believe that we have total control over all areas of our lives, but in reality there is no such thing... at first I kept thinking why me? Then I realized why not me? Having Multiple Sclerosis has made me mentally stronger than I ever imagined I could be” (OMalley, 1996). Generally, the experience of the MS patient remains undocumented and poorly understood by the rest of society (Miller,1997). Standard material on Multiple Sclerosis concentrates on the neurological signs and symptoms of the disease with little attention to these psychosocial aspects, of which there are many (Murray, 1995).

Multiple Sclerosis forces its sufferers to get to know themselves. This illness “demands that you listen to your body, learn its rhythms, needs, possibilities and limits. It demands that you come to yourself; body and soul (Siegel, 1995).”

Invisible MS, like any other major adversity, threatens the afflicted persons way of thinking, way of seeing self, way of living. With MS you can see yourself as a victim or burden and act accordingly. You can withdraw into depression and self pity and grow bitter and cynical. Or, you can come to know yourself more deeply, appreciate yourself for who you are... You can tap resources of courage and spirituality of which you were hardly aware ... Either you will retreat from life or learn to live it more wisely and fully... (Siegel, 1995).

There are many ways that a person can cope with chronic illness. Coping is behavioral and cognitive strategies that an individual employs to deal with both physical and emotional stressors (Cichoke, 1993). Many coping strategies employ both family and friends. Serious health problems challenge both the quality and maintenance of relationships with family and friends. However, at the same time, such relationships play a critical role in coping with illness (Coyne et. al, 1995). When examining close relationships and illness, the responsibility of assisting the ill person has traditionally been a responsibility of the family. However, in todays society, family roles have less defined boundaries due to the fact that families are no longer as close as they used to be (Coyne et.al, 1995). This is a result of urbanization and geographical mobility, which changes the way that we receive health care. These two trends have taken many people away from where their family members live. Therefore, people are now more dependent on commercial forms of care such as that provided by nurses, aids and physicians to compensate for the absence of family members.

Family is a very valuable resource for those coping with Multiple Sclerosis; financially, physically and emotionally (Miller,1997). For initial support after diagnosis, most people rely on their parents or spouses for support (Miller,1997). However, at times, individuals direct their anger at family members, creating tension and distancing themselves from those most committed to helping (Miller,1997). The disease soon becomes the whole familys responsibility because in many respects, they all have to live with it (Ottenberg, 1978). Yet, overall, “frequent interaction with family members has a positive influence on ones attitude about the disease” (Walsh and Walsh, 1989:796).

People with Multiple Sclerosis do not just have altered relationships with family, but with friends as well. There are many misconceptions held about people with disabilities. Studies of attitudes towards disability suggest that people do not tend to “freely select” people with disabilities (Coyne et. al, 1995). It is commonly believed that sick people enjoy the attention that they receive and use it for all that it is worth. Or, that people with chronic illness rely on their illnesses as a ready made excuse for shirking obligations (Charmaz, 1991). The stereotypical image of life with illness includes images of pain, hospitalization, decreased pleasure, dependence, inactivity, social isolation and role and status loss (Coyne et. al, 1995). There is undoubtedly a large correlation between chronic illness and stigma. If family and friends think that the illness, symptoms or treatments are stigmatizing, they may demand that the individual with the illness keep quiet about them (Charmaz, 1991).

Illness can help people measure the strength of their relationships. For example, a hospitalization provides a way of measuring the loyalty, devotion and commitment of ones friends (Charmaz, 1991). Often, illness causes the dissolution of most earlier and casual relationships. However, there is a hidden benefit in this. It can make people realize that many of their relationships prior to illness were superficial (Charmaz, 1991). People in the life of an individual with MS can, and often do, respond in mysterious and perplexing ways. “I was severely shocked by the reactions of some people close to me on learning that I had MS. The reactions I experienced ranged from acceptance and active support to denial that was so extreme that communication was no longer possible” (Stoneham, 1995). It has also been found that those MS patients diagnosed at a younger age were more likely to say that friends withdrew from their lives (Coyne et. al, 1995). When friends do disappear, the most common reason is because they do not know how to respond. The amount of social support in chronic illness depends on the nature and course of the symptoms, visibility of the symptoms, and the general degree of stigma attached to the particular illness (Coyne et. al, 1995). True friends play a large role in the lives of people with chronic illness. They are the ones who can still see and affirm the healthy aspects of the persons personality despite the illness. They also recognize the need for diversion and normalcy. Supportive friends are not afraid of laughing when things do not go well (Register, 1987). It has been found that increased value is placed on relationships through the experience of illness (Coyne et. al, 1995). To be seen as someone worthy of friendship enhances ones self-esteem and increases ones psychological resources for dealing with life stressors (Coyne et. al, 1995).

It is important for the ill individual to realize that there needs to be a give and take in order to maintain a friendship (Coyne et. al, 1995). There must be a large amount of trust in friendships between an ill and a non-ill person. Friends must decide for themselves how fully involved they want to be in that persons life. It is crucial to realize if they want in, let them in, or if they prefer to back off a bit, let them (Register, 1987). Chronic illness may usher its sufferers into a separate reality. Although illness may order ones life, it does not have to entirely fill or define it (Charmaz, 1991). Some events that are connected with illness can be positive or come to be defined as such. These events affirm that one has taken control over the illness rather than the reverse (Charmaz, 1991). Often people come to the realization of what is really important, that the material and trivial things in life are not what matters, but close relationships and the beauty of nature and life.

Not only does chronic illness have a profound impact on friendships, but on relationships with intimate partners, as well. Illness shades views of love, marriage and the future (Charmaz, 1991). People with chronic illness often feel that they have a decreased attractiveness. “Illness makes you wonder whether youre still attractive to the opposite sex-was I a disability or was I still me?” (Ottenberg,1978:51). It is commonly believed that adversity brings couples together. But when the adversity comes and goes, as it does in most chronic illness, it is a different and more complicated story (Register, 1987). How illness affects couple relationships is difficult to determine because they are “precarious institutions” that are affected by many extraneous forces (Register, 1987). Couples often have to contend with a whole set of problems that have nothing to do with illness, and it becomes hard to disassociate one problem from another, as they all intermingle. Illness is another factor thrown into the mix.

MS also affects casual encounters with acquaintances, not simply relationships with friends and family. Multiple Sclerosis can often be an invisible disease. Many of its symptoms are not obvious to the untrained eye such as vision problems, unsteady gait, numbness or dizziness. Some patients feel that it would be preferable to have a visual handicap, a symbol that there is something wrong and a reason for why they are not doing certain things (Register, 1987). For example, a young woman with MS was experiencing a relapse including vertigo and weakness. She took the elevator one flight only to hear another student say ,“Whos the lazy bastard whos going to the second floor?” Had this woman been in a wheelchair or had a cast on, this would not have been an issue. Most people assume that the person who is walking without assistance and who looks well is feeling well (Siegel, 1995). Patients with Multiple Sclerosis are forced into a “humiliating” struggle to legitimize their illness, to show that their fatigue and pain are similar to that of their healthy friends in name only. When we are ill in our society, one can expect chicken soup and compassion, sympathy and tender loving care. We get phone calls, visits and cards. People then get well . With MS and its invisible symptoms, there are no rituals, flowers or visits (Siegel, 1995).

“How are you?” can be one of the most difficult questions that a chronically ill person needs to learn how to answer (Charmaz, 1991). This question may emphasize isolation by providing a tantalizing opportunity to share their pain, then reminding them that to share such emotions would not be socially appropriate (Register, 1987). A large issue facing chronically ill people is if and what they should tell others about their illnesses. Disclosing illness can have many different effects including; straining relationships, exposing hidden feelings, risking loss of control and autonomy, risking loss of acceptance by others and being ignored, rejected or stigmatized (Charmaz, 1991).

How the disease impacts ones personal life depends on attitudes, coping skills and support networks as much as, or more than, the physical changes that the disease brings (Murray, 1995). In a study conducted in 1997 by Miller on the experience of living with Multiple Sclerosis, all of the participants said they relied heavily on social networks. It has been found that “those who are surrounded by caring others” gather inner strength to cope with the illness (Walsh and Walsh,1989:797). Barnwell and Kavanagh (1997) suggest that maintaining close social contacts are crucial since social activities can help people stay positive. (Barnwell and Kavanagh, 1997). Adjustment to any chronic disease is difficult and challenging, but manageable by most if they have a strong network of support, counseling and education (Murray, 1995). When examining particular coping styles of MS sufferers Miller (1997) found that the most frequently used coping styles are relying on oneself, remaining optimistic, maintaining humor, learning something new, and attempting to keep life as normal as possible, all of which are accomplished with the aid of social networks.

Whether or not MS patients have a strong network or not, they will feel an impact on their mental health. “The severity of the disorder, the unpredictability of its course and the lack of specific treatment would be expected to have a substantial psychological impact (Barnwell and Kavanagh,1997:411).” “I somehow believed that because what I had been dealt was a raw deal, I deserved to have more than anyone else. I wanted a crystal ball to tell me about the future and all that it would hold for me” (Unruh, 1994). Quality of life studies suggest that there are seven factors affecting the mental health and overall life quality of MS patients including: loneliness/companionship, fatigue, degree of chronic pain, duration of symptoms, stressful life events, self-perception and recognition of cognitive deficits (Murray, 1995).

Two important medical features that are thought to contribute to the emotional impact of the disease are how active the disease is and how much of a functional loss the patient has had (Devins and Seland, 1989). Those with the more minor relapsing form of the disease, as opposed to the chronic form, have been found to maintain a sense of hope and control while dealing with the obstacles in their illness. Although there is a loss for the person with MS, there does not appear to be a sense of perpetual sadness (Miller,1997).

In a phenomenological study done in 1997 by Miller, uncertainty surfaced as a major theme due to the unpredictability of relapsing Multiple Sclerosis. It is very difficult not knowing when the next exacerbation will occur (Miller,1997). Invisible MS, like any other major adversity, threatens the afflicted persons way of life. They are uncertain whether they will be worse tomorrow, next week or next year. They are forced to worry about whether they will be like other MS patients that they see in the community or at support group meetings (Murray, 1995). However, with time, people with the disease become accustomed to the exacerbations and learn to expect their symptoms to be temporary rather than permanently disabling. Most importantly, they learn to live one day at a time (Miller,1997).

Due to its unpredictability Multiple Sclerosis is a very stressful disease. A study done by Warren in 1991 examined whether emotional stress is associated with MS relapses. The results of this study suggested that there is a relationship between emotional stress and exacerbations in Multiple Sclerosis although it is not known whether stress is a cause or a consequence of relapse. One explanation for this finding is that emotional stress precipitates changes in the immune system which are associated with relapse, as stress is known to have significant effects on the immune system (Warren, 1991). A second explanation, and possibly a more accurate one, may be that there is a circular pattern where having Multiple Sclerosis triggers or provokes other stressful life events, in turn causing symptoms (Warren, 1991). The most disturbing stressors reported by participants in their study were fatigue, difficulty walking and uncertainty about the future. The most acute stressors were observed in patients with short histories of the disease, where cognitive and physical losses were not yet apparent (Devins and Seland, 1987).

In addition to the stress caused by the disease, self-esteem can also be greatly affected by Multiple Sclerosis. “The debilitating symptoms of MS can have adverse effects on the sufferers self-esteem which is a vital coping resource for sufferers of chronic disease” (Walsh and Walsh,1989:797) It has been found that two things, positive affect and love, are most accurate in determining the self-esteem of Multiple Sclerosis patients (Walsh and Walsh, 1989). One study shows that self-esteem is little affected in most patients once they have adjusted to the disease, however, the time of adjustment varies (Murray, 1995). It has been suggested that most of the psychological and emotional problems stemming from the disease may occur in the first five years following diagnosis. As a patient begins to gain more knowledge about the disease, they will have a more positive adjustment (Devins and Seland, 1989). A study done in 1989 showed that “MS patients perceived themselves to be the recipients of more positive affect and to be less socially isolated” than a control group of persons not afflicted with the disease (Walsh and Walsh, 1989:797). Those who are the most accepting of the reality of the disease and are able to incorporate it into their self-concept also had higher levels of self-esteem than the control group (Walsh and Walsh, 1989).

Although some authors report a positive correlation between Multiple Sclerosis and depression, others have found no relationship (Murray, 1995). MS patients are more often diagnosed with psychiatric disorders than healthy people. One of the best predictors of depression in MS is a history of previous depression (Murray, 1995). Positive social support decreases anxiety and depression (Miller,1997). There are indications that the way individuals try to cope with MS may determine whether or not they will experience symptoms of depression (Sullivan, 1997). Sullivan found that there are six coping categories; information seeking, seeking support, positive focus, avoidance/denial, present focus (one day at a time), and negative focus. Those MS patients who focused on the present, as well as those who relied on avoidance/denial, were less likely to be diagnosed with depression. These coping styles allow individuals to attend to day to day responsibilities similar to how they did things prior to diagnosis. This accounts for stability and normalcy in their lives. Those MS patients who dwelled on the past or future fostered depressive symptoms by highlighting losses or thinking about losses that they might experience in the future.

For some people, spelling out the details of their illness to others is a good way to overcome depression. They convince themselves that they have a reasonable understanding of the illness, besides a shaky set of emotions about it. Educating other people may be “necessary for ones survival ”(Register, 1987). Hence, this paper has become necessary to my own, having been diagnosed with Multiple Sclerosis one year ago. Those afflicted with this disease have a long road to travel, encompassing physical, emotional and social changes. Despite all the common changes people with Multiple Sclerosis face, there are different obstacles that make each experience different. In my own case, I am confronted with MS at a time when I am experiencing other life changes, since I am a college student.

Self-concept is a persons self-perceptions, formed through experiences with his or her environment, and what better time to gain self-concept than at college (Pascarella and Taranzino, 1991)? A study done by Pascarella and Taranzino (1991) indicates that students feel stripped of their social identities by the transition from high-school to college. They therefore must rebuild these identities when in college. College is about new ideas, new teachers, new friends, coupled with new freedoms and opportunities, academic, personal and social demands (Pascarella and Taranzino, 1991). In the college years, student identity tends to develop in a more positive direction (Pascarella and Taranzino, 1991). Students have been shown to change values, attitudes, and morals while attending college (Pascarella and Taranzino, 1991). College is crucial for the development of self, and students move towards a greater self-understanding and self-definition. As they become better learners, they become increasingly independent of their parents, and gain a sense that they are in control of the world and what happens to them (Pascarella and Taranzino, 1991).

There are seven vectors of student development as identified by Pascarella and Taranzino (1991). The first is achieving competence, especially intellectual. Secondly, one needs to manage emotions, especially those that involve sex and aggression (Pascarella and Taranzino, 1991). The third vector is developing autonomy. The individuals disengage from parents and the need for approval and reassurance. At the same time, the individual recognizes the importance of others (Pascarella and Taranzino, 1991). The fourth vector is establishing identity as an individual, as well as clarifying their conceptions of their personal appearance and of proper sexual roles and behaviors. These are very important psychosocial events. The fifth vector is learning to tolerate others and recognizing a need for openness and diversity. The sixth vector is developing a purpose. Such personal growth requires that students develop plans that reflect their priorities in recreational and vocational interests, vocational aspirations, as well as lifestyle choices (Pascarella and Taranzino, 1991). The final vector entails developing integrity. It is during this time that students reject or retain their prior views on authority.

College students face many challenges and changes throughout this crucial developmental time. There are many issues that they need to address. These include saying good-bye to friends and family, keeping in touch with high-school friends, managing conflicts with roommates, being away from home for the first time, worrying about being able to handle work and homesickness, balancing studying and partying, deciding whether or not to become a part of Greek life, and making decisions about sex, alcohol and drugs. College students, on a daily basis, are forced to contend with such issues about their academic and social lives. However, no one ever thinks that in addition to these stresses, pressures and decisions, that one will additionally have to deal with a chronic illness. While most students are worrying about who will buy them alcohol on a Friday night, chronically ill students may be contending with issues such as who will come visit them when they are in the hospital, or the unfairness of their diagnosis. This can isolate them from their peers and clearly demonstrate to the ill student a difference in priorities.

College is a time when young adults learn who it is that they really are. College is about living and getting to know yourself. College functions as a transition between adolescence and adulthood. It is a time to examine and test new roles, attitudes, beliefs and behaviors. During college individuals are able to give full attention to their change and development (Pascarella and Taranzino, 1991). What happens when this time is drastically interrupted by a chronic illness? At a time when students think that they are control of their lives and are invincible, a diagnosis of Multiple Sclerosis shatters this plan.

Chapter Two - Methods

Survey

The purpose of the survey (see appendix A) was to find out how college-aged individuals with Multiple Sclerosis coped and lived with their illness. The first several questions pertain to biographical information about the respondent. Specifically, they were asked to report their age, sex, race, and state of residence. They were then asked when they received the diagnosis of MS and what type of the disease they were told they had.

The first set of more open-ended questions pertain to diagnosis, including emotions and symptoms. In the literature, there were some common emotions that were shared upon diagnosis and these questions were designed to see if respondents of a younger age experienced similar emotions.

The next set of questions ask about conceptions of self and thoughts about illness. Several probe at the respondents emotions, asking them about stress, anger and embarrassment. The next set of questions focuses on interpersonal relationships with friends, intimate partners and family. The questions examine responses by others at the time of diagnosis, and how these relationships have been affected by the respondents illness. The preceding several questions aim to procure answers about disclosure of illness, perceived perceptions of others and discrimination by others.

The last section in the survey addresses college education. In the literature surrounding chronic illness, the issue of its impact on education is never addressed. The questions start out general, asking respondents what college they attend, their year of graduation and field of study. The preceding questions address professors and their awareness of the illness, length it will take to receive a degree, academic tasks that are found difficult, and the overall effect Multiple Sclerosis has had on the respondents education. One of the final questions on the survey asks about future plans. This is important because many sufferers of chronic illness have difficulty planning for the future. The last question ends the survey on a positive note, and asks the respondent to examine how MS has enhanced their life, if at all. It has been found that many people do see a silver lining in the gray cloud of their illness.

Sampling

The sampling process was carried out in several ways. First, I located MS support sites on the internet. Two sites proved very useful, “Joolys Joint” and the “International Multiple Sclerosis Support Foundation.” Both sites are dedicated to individuals with Multiple Sclerosis, and offer a variety of information and services. On “Joolys Joint”, there is a “web-pal” service, where people with MS can both place and view advertisements for others with their disease. Those individuals who were college-aged were written to via e-mail, and asked if they would like to participate in the survey. The site was checked every week for new additions, and therefore more potential respondents. An advertisement was also placed on this site, describing the research and asking college-aged people with MS to e-mail the researcher. Secondly, the “International MS Support Foundation” has a special page designed for young people with Multiple Sclerosis. Those who said in their biographical information that they were attending college, or were college-aged, were contacted and asked if they would like to participate in the study. This site, as well, was checked weekly for updates.

The second method of sampling that was used was selecting 50 colleges and universities from a college guide book. I selected such a large number of colleges because I knew it would be unlikely for school officials to be aware of any students with MS. This was not a random sample, rather colleges and universities were chosen based on location and familiarity. The sample was narrowed to schools on the East coast because I knew that I would not have a large enough sample size to examine geographical differences, so I kept my sample to the area in which I attend college. Familiarity with the institutions was important because I thought it would give insight into my respondents experiences. For example, I assumed that students on smaller campuses would have less of an opportunity to hide their illness. Additionally, I knew that the survey was lengthy and did not want to burden the respondents by more questions than necessary. Once I selected the 50 colleges and universities, I wrote a letter (see appendix B) to the directors of their health services. The letter explained the research that was being conducted and its importance. The directors were asked that if they were aware of anyone in their institution with Multiple Sclerosis to pass on the relevant information about contacting the researcher. The letter also included a letter of support by the Dean of Union College, in hopes that this would assure the director that the research was being supervised and increase the response rate.

Distribution

The survey was mailed to those who agreed to participate along with a cover letter (see appendix C) explaining the research. The survey was approved by the Human Subjects Committee at Union College. The enclosed letter assured confidentiality by explaining that they would only be identified by a number and a pseudonym. Instructions were given regarding answering the questions, asking the respondent to be as thorough as possible. They were also assured that they did not have to answer any questions that made them feel uncomfortable. Also included was a form for the respondent to fill out if he/she was interested in receiving the results of the research upon its completion and if he/she would like their names passed out to other participants in the study. This latter option was completely voluntary, and I assured respondents that I would not identify if they were part of the study. In this instance, the benefits of support that respondents could supply each other with outweighed the slight risk of exposure. A self-addressed stamped envelope was included to make it easier for the subject to return the survey.

Response rate

My response rate was 78%. Fourteen surveys were sent out and I received ten of them. Due to time constraints, I was not able to include one late survey and one additional request for participation in research.

Chapter Three - Results

The first set of questions in the survey were designed to find out demographic information about the respondents. The next set of questions address diagnosis and medication. Several questions address self-concept. The questions that follow address respondents emotions, as well as reactions of family, friends and intimate partners. The final set of questions address college education and future plans.

Demographics

Respondents, all Caucasian, range in age from 19-25, with the mean being 21.8 years. There were a total of ten respondents. Two respondents are male and eight are female. They come from diverse locations throughout the United States as well as the world, including California, New York, Pennsylvania, Idaho, Georgia, Oregon, Iowa, West Virginia and Germany. Some of the respondents had been diagnosed with MS as recently as July of 1998 and as far back as 1992 with the average length of living with MS being 3.2 years. All of the respondents have relapsing remitting Multiple Sclerosis.

Three respondents live with their parents, two with husbands and one with her boyfriend. Another lives in college housing with six other people. Three respondents live with roommates, one in a dorm, one in an apartment, and one with an older married couple.

Diagnosis

The first set of questions pertain to feelings upon diagnosis. The feelings that the respondents experienced were similar. Most felt scared, sad, shocked, and confused about what the diagnosis meant. “It felt like my life had just come to an end. All my dreams and future plans were gone.” Yet, four respondents felt relief upon diagnosis. One said, “I had been experiencing so many symptoms that everyone said it was in my head. I was starting to think I was going crazy. The uncertainty was far worse than the diagnosis.” Others were scared that they had a more severe life-threatening illness. Additionally, none of the respondents experienced any doubt about their diagnosis because of the symptoms respondents initially experienced and as a result of their diagnostic tests such as MRIs, spinal taps and evoked potentials.

The first symptoms of the respondents varied. Many involved numbness in body parts such as legs and arms, weakness, loss of muscle control, tingling throughout the body, and overall fatigue. Several respondents reported their first major symptom was Optic Neuritis, blurred, painful or double vision. Vision problems are often what sends MS patients to a neurologist in the first place. One respondent described her initial symptoms, “Basically they were more annoying than anything.” At the other end, one respondent felt that his initial symptoms were worse than what he experiences now.

The symptoms that the respondents presently experience are also quite diverse in nature. Most cited fatigue as their worst, or one of their worst, symptoms. Numb, weak and tingling body parts are quite common. Also mentioned were depression, vertigo, bladder problems, headaches, short term memory loss, sore/fuzzy eyes, weakness in legs, tightening of the face, speech problems and itchy hands. One respondent described the frustration that his symptoms give him, “Its hard to write and type. I have to do the one finger punch thing because I cant feel the key pad. Its hard for me to even put on a pair of gloves. Sometimes, I will accidentally get two fingers in one finger hole.” One respondent says, “I havent had an exacerbation in a long, long time.” However, others are bothered by symptoms on a daily basis.

Treatment

The majority of the respondents are on medication for Multiple Sclerosis, with Avonex, an once-a week intra-muscular injection being the most common. Three respondents take Betaseron, another injectable, and another is on no therapy at all. Most respondents also mentioned they undergo intravenous steroids when exacerbations occur. All respondents experienced some type of negative effect from their medication, both physically and emotionally. These varied from person to person, not by specific medication. Respondents mentioned flu-like symptoms as the most common physical side effects of their therapies. Other problems included developing welts at the injection site, being dependent on another person to administer the shots, being “strapped down” by having to be home or keeping the medicine cold while on vacation, having to administer the medication every other day (in the case of Betaseron), and experiencing a fear of needles. Respondents reported difficulties with IV steroids as well. They report withdrawal, shaking, insomnia, hunger, and anger. One respondent says that her medication is a reminder to her that she has MS, while others enjoy being pro-active about their illness. This latter belief is expressed in the following quotation: “I think taking Avonex has a lot of emotional benefits . Just knowing that I am taking a medication that has been clinically proven to help me is a great benefit...I actually look forward to my injection nights.” Another respondent talks about the casual attitude she and her friends have about her injection: “I live in a dorm so I basically have a floor of neighbors. My roommate and I love the nights I get a shot and we all sit around and make jokes. It is natural. I pull out the needle and shoot up, like fixing your hair.”

Often, people with MS are overwhelmed by their physical symptoms. When respondents feel physically sick, all of them agree that rest and relaxation are the key. One respondent prefers to be alone. Some call the doctor right away and others wait a while. One respondent captures the disease well when she says that, “There is nothing else TO do other than what I think will make it go away.”

Self-perception

None of the respondents consider themselves completely disabled and their reasons vary. One respondent felt that she is disabled “sometimes” because it takes her a long time to accomplish things. Another felt she was “mildly disabled” because she cant do some things but can accomplish many things that a disabled person cant. Others felt that they were not disabled simply because they could still do the things that they always did. One even said she could “do more than most healthy people.” Another respondent said, “I have MS, but MS does not have me.” Another person feels she is not disabled, because she is leading “a full, happy and independent life.”

Despite their different feelings about being disabled, all of the respondents think about their illness everyday. Some said they think about it constantly, while others tended to think about it more when they experience symptoms, or are unable to do things because they are feeling sick. One young woman includes it in her self-concept: “I think of MS when I am unable to do certain things and even think of it when I am asked to describe myself or what I like to do.” Others are reminded by dealing with medication, or for no reason at all. “I think of my illness almost everyday. I mean, why shouldnt I? Its always here and it wont go away.” Respondents tended to think about their illness when they are at home, particularly in the evening, or when others initiate discussion. Several recall frustration about accomplishing a task that was once so easy. One respondent reports:

...I am so easily reminded. This happens when I go to pick something up and I drop it, or when I go to write a check. Or when I look across the field and cant quite see what I want. Its bad enough to have this disease, but to constantly ponder and worry about it makes it that much worse.

When asked to describe themselves in three words, as well as to imagine what they see when they look down on themselves, the answers ranged greatly. All but one respondent described themselves positively, as intelligent, happy, caring, ambitious, proud, helpful, compassionate, accepting, outgoing, witty, fun, friendly and energetic. When asked to elaborate and describe what they saw when they looked down on themselves, the majority of the respondents were positive but mentioned the adversity they had overcome. They saw themselves as trying to not let MS interfere with their lives. Others felt that they were strong, and had come a long way. One respondent who sums up the range of feelings, says:

Looking down on myself I see a handsome young man who looks perfectly healthy. Im seeing him walk and talk without any problem. Oh, wait a minute, now he just tripped. But he recovers and goes on walking. I think hes probably just a klutz. Now hes running-there is something wrong with this boy. Now I see him writing a check, a little sloppy handwriting but not too bad. Now I bring out a telescope to get a better view of him. I can see that hes a little bit scared and a little confused. But I can still see a smile on his face.

There was only one mention of a negative self description as one young man described himself as “unlucky.” Yet, three respondents saw themselves in a negative light when they looked down on themselves. One said she was “scared to death” while another saw herself as a failure due to poor performance in school. The third respondent reports that having MS “sucks and is embarrassing.”

Emotional responses

All but two respondents say that Multiple Sclerosis causes them stress, and several mention that stress is exacerbated when experiencing a relapse. They said that their symptoms tend to increase when they are stressed or over work themselves. Times of heavy stress for respondents include worrying about their ability to keep up at work and with assignments due to MS, and dealing with the responsibilities of medicines, insurance and doctors. One respondent describes the stress associated with dealing with the “secrecy” of the illness since no one can tell he has it. He reports that its hard for him to not be able to do things and then have to make excuses for it. Others report as stressors; being tired all the time, knowing that there is nothing that you can do about having MS, not knowing if you will fully recover from a relapse, and feeling like a burden to others. Because when she feels sick, one respondent prefers to be alone, her relationships have become strained.

Respondents relied on different sources to help alleviate the stress and deal with the negative emotions caused by the disease. Some work as hard as they can, while others rely on family. Two respondents keep positive attitudes about their disease and think about a cure. One even tries to “{laugh} off the things going wrong” with her body. Some remind themselves that it will eventually go away. One respondent copes through her faith in God while another tries to channel his energy into activities. To combat stress one respondent relies on behavior modification techniques such as exercise, meditation, and deep breathing. Many respondents use positive self-talk to cope with their emotions. One young woman believes having Multiple Sclerosis makes her unique and is not upset by it. Most tell themselves that “it could be worse” and this places their thoughts into perspective. One respondent says that “I have such a full life. I remind myself that I am so lucky to have everything I have.” Several tell themselves there is no point getting angry, because there is nothing that they can do about it. Six of the respondents never received counseling of any sort to cope with their disease. Three sought counseling at the time of diagnosis, and all said it was very helpful. One respondent regularly sees a therapist at an MS center.

Despite methods of overcoming the negative emotions caused by MS, the majority of the respondents reported getting angry at some point about their illness, but they manage their anger differently. One respondent takes her anger out on her mother because she is a good listener. Another respondent shares a recent experience where he took his anger out on another person:

Today I got pretty mad. I was trying to nail a nail with a hammer, but I kept missing it. I was aware of what I was doing , and so was my friend. He then replied Boy, that MS has really taken a toll on your coordination. For some reason I just snapped f--- you, dont you think I know that?

Two reported thinking that “its not fair” that they have MS, while another got angry about her unknown future. One respondent tends to get mad at herself, while others make it a point not to blame themselves, “ Theres no one to get angry with. No one gave me MS. I didnt give it to myself even.” One respondent says that she doesnt get angry, because she has so much support around her. When two young women get angry, they finds it comforting to e-mail others with MS. One respondent simply stated “I cry.” Another tries the opposite approach and rather than anger cites it as frustration: “I like to think of a way to laugh at it directly, right towards the MS...I think of the funniest stories I have in the past and go back and reminisce.”

Four of the respondents reported being embarrassed by their illness at least once. One respondent often feels embarrassed, because she cant walk that well and thinks others are staring at her. Another respondent describes how her mother embarrasses her:

My mom really enjoys the attention she receives for having a “sick” daughter, and therefore she feels its necessary to tell everyone she meets. Anytime she runs into an old friend it is the first thing she tells {him or her}. She works in a customer service position and anytime a customer talks to her for more than two minutes she finds a way to weasel it into the conversation.

Another respondent recalls an embarrassing story:

I was with a bunch of friends on Halloween. We went to a spook alley after having a couple of beers. We were all crowded into this little room and I had to turn around. Thats when I lost my balance, stepped on this little girls foot and fell into some of the props, knocking them over. I was so embarrassed I didnt even want to get up. And when I did, I remember looking at one of my friends faces and getting a look of pity towards me. They all knew that I wasnt drunk and it was the MS to blame.

One young woman reports that she becomes embarrassed when shes out with friends and her symptoms act up, or when she is fatigued and has to cancel plans or leave early. Another recalls several embarrassing moments:

{I fell} down a flight of stairs at a hockey game Once, I lost control of my bladder and had no way to fix it. I was mostly embarrassed at first when I had to change my lifestyle and couldnt run, dance, etc. like I used to. The thing that embarrasses me the most is when others wonder about me and do not ask me personally, but {talks to} relatives and friends.

The remaining six respondents had no embarrassing moment to share, and one emphatically replied “NOT AT ALL!” when asked if she had ever been embarrassed by her MS.

Relationships

Perceptions

Three respondents feel that their diagnosis has not changed the way people perceive or act towards them, but others feel that they notice a difference, both positive and negative. One respondent feels that people are constantly watching him when he walks into a room. Another feels that the only other person who perceives her differently is her mother. “Everything I do, {and} any everything I am now to her is {prefaced by} and she has MS.” Many respondents believe that people see them in a positive light, stronger than they once were:

I think some people perceive me as stronger because I can deal with this and have an OK attitude towards it...I feel many people are so uncomfortable talking to me about it, or think I am uncomfortable about it that it is hard to get past the “How are you?”

One respondent said that people tell her that she is an inspiration to them. Only one respondent felt that she was treated in a discriminatory manner, by “the guys who act like immature jerks {when dealing with my illness}.” The remainder of the respondents were not able to cite a time when someone behaved towards them in a discriminatory way.

Friendships

Respondents had a lot to say about how their friends responded to their diagnosis, as well as how their disease has affected these relationships. While one individual says that she wasnt close with anyone at the time of diagnosis, others reported mixed emotions from their friends. Several respondents recall some friends being supportive, loving, understanding and concerned. “My friends were all totally supportive when I first told them...They stood by my side and let me cry on their shoulders. I lost no friends when I told them. They all wanted to know as much as they could, so they could help me in any way possible.” However, others said that their friends were shocked, uncomfortable, confused, scared, uninformed and did not know how to respond. In one case some friends drifted into acquaintances, and one respondent reports that one friend no longer associated with her. One respondent recalls the ignorance of a friend, “ I remember seeing an old friend that I hadnt seen in a while... I decided to tell him about me having MS. When I told him he replied , What sleazy slut did you pick that disease up from?”

Some of these friendships have been altered by the disease; one young woman feels that she cant do all the things she used to with her friends and that has caused some distance between them. One young man feels that although his friends dont understand the illness, they are accepting. Two respondents feel that their disease has made their friendships better and stronger. “...I realize that they are going to be there if I need them to lend a helping hand.” One respondent chose to keep the illness out of her friendships altogether. Another is extremely selective in whom she chooses to disclose this information. She explains how difficult it was to tell her close friends:

I loved telling them and it felt good...They, of course, dont see what the big deal is, and why it was a huge thing for me to tell them... But they now understand what a huge thing it was for me to tell them and its brought us closer.

Family

Most respondents received positive responses from family members upon diagnosis, although initially parents responded by being shocked, distraught, devastated, upset and extra cautious around the respondent, thinking they were emotionally fragile. Most said that their parents came around and were extremely supportive, concerned, compassionate and loving. Several parents tried to learn as much as they could about the disease.

Respondents families responded differently to diagnosis. One respondent said his parents worry a lot about him and another believes that her parents feel guilty. One respondent recalls how her parents dealt with her diagnosis:

My family took it hard, because my fathers side of the family always had some kind of health problem or another, and this just added to it. They are slowly getting better at dealing with it. My mother is who took it the hardest. She was upset by it and didnt show it, kept it bottled up inside, and tried not to show me her emotions. They are both now just starting to be able to talk to me about it.

Another respondent describes how her family copes with her illness and the effect it has on her:

At first they wanted to send me everywhere to find the best doctor or the best treatment, they felt there had to be something better. My mother is very worried and often is too worried. I can do it myself, but she seems to think she needs to protect me. My uncles and aunts worry constantly and are always calling to see how I am doing. I try to explain I am fine and they do not need to worry, but they dont listen. My grandparents pray and hope for better, but again it is just their way of worrying and helping out. My family is the biggest concern I have because I feel I am an inconvenience, and wish they would not worry.

Significant others

Not only were family relationships affected by the diagnosis, but intimate relationships were as well. Three of the respondents report being intimately involved with the same people that they were with at the time of their diagnosis. One says that she had symptoms at the start of the relationship, so it has always been a part of it. One respondent who is married stated that:

We were already pretty serious when I was diagnosed. He is NOT the kind of person who would have left me upon learning. I sometimes feel guilty, but then again, I dont say, slow him down. Im just thinking of the future. I joke that Ill leave him if I get severe symptoms, and he says he wont let me. Hell track me down, and get me back.

Another married young woman worries that her husband will regret marrying her. Yet, neither one voiced that MS had any major impact on their relationship.

Three people were involved with significant others at the time of diagnosis and no longer are now, while others are not currently involved. One said MS played no part in the dissolution of the relationship while the others feel it played a part in it. This latter experience is illustrated in the following statements. “Its kind of amazing how something like this can bring out the best or the worst in people.” Another respondent who is no longer involved, describes the effect MS had on the relationship: “The guy was a jerk. He made fun of my symptoms, and said I was making everything up.” One respondent says she was dating two people, both of whom “abandoned” her when she was hospitalized for an exacerbation. The remaining three respondents were not involved in a serious relationship at the time of diagnosis. When dealing with the prospect of future relationships, single respondents say that they would tell the person right away about their illness and what to expect so they dont get too involved and then get hurt.

Support

The people from whom respondents gather the most support varies. All three respondents who are married/engaged cited their husbands/fiancés:

He supported me throughout the entire diagnostic process by always going to the Dr. Appointments with me (including the spinal tap), and taking care of me when I am sick. But, he doesnt treat me like I am different or fragile. He is there when I want to talk about it, but otherwise he leaves it alone.

Five respondents reported getting the most support from their parents, “If I need to cry, yell or scream, because I am angry or frustrated, they are always there.” Another says her parents go out of their way for her and do things that they wouldnt do if she didnt have MS. Two receive support from a close friend.

Disclosure

The majority of the respondents said that all of the people close to them are aware of their illness, however one exercises caution. As one respondent says, “Its just a part of who I am... and there is no reason not to tell them.” Another respondent feels strongly about disclosure: “If people dont stick by me they arent worth it anyway! I feel Ive got nothing to hide...Im not ashamed that I have MS.” One respondent wants people to know and not be afraid to talk to her about the disease. Another says he doesnt have much of a choice because he lives in a very small town. One young man selectively tells people; his family and close friends are aware but not the people with whom he works. “I do not want to tell people about the MS, because I am afraid that it will prevent me from other job appointments.” One respondent is very cautious in who she chooses to disclose to:

I dont want people to treat or think of me any differently because of my MS. Its so very personal that I dont want to tell anyone unless we are really very close. I dont see a reason to tell...Theres nothing wrong with me and I can and do everything everyone else does. I dont want to make excuses for something.

College

Attending college may make it difficult to conceal an illness, due to the often tight-knit community. Three of the respondents have not attended college; whereas, three people have graduated. One studied finance and graduated in 1998. Another respondent is a chemical engineer who graduated in 1998. The final respondent was a sociology major and graduated in 1995. All attended school full time.

Three respondents are currently in college and one is in graduate school, pursuing her Ph.D. in clinical psychology. One respondent attends a school in Germany and studies social work and another is majoring in secondary education with a concentration in English. The final respondent is studying elementary education. All are attending college full time. Three of the respondents reported that their professors were aware of their illness. One reported that one of her professors was not accommodating and penalized her for missing classes due to illness. However, she reported that all of her other professors have been helpful and understanding; giving her extra time for assignments and accommodating her as needed. Another respondent says her professors are very understanding and some even follow up on her to see how she is doing and offer help as needed. The other respondents said that their professors were aware, but it didnt have a significant impact on their education. There were various reasons why respondents chose not to tell their professors. One felt that it was not important, because they barely know her and she only has contact with them for a short amount of time. Another respondent felt that she “didnt want any special favors.”

Five of the respondents who attended college graduated or will graduate on time, and one even graduated early. The two students who did take extra time attribute it to factors other than MS. One student who was diagnosed a few months before his first year of college reports that the experience was “academically, physically and emotionally my worst year.”

Two of the respondents reported that they found no academic or school related tasks difficult. One respondent reported that when she gets Optic Neuritis studying and reading become difficult. She said that she needed a lot more sleep than the average college student, which was sometimes difficult to obtain. Another student reports that gym class in the heat is very difficult. One respondent experiences difficulty studying late at night and staying awake in class after working a full day in her internship. Another respondent reports having difficulties with concentrating on her work and being able to remember things for tests during her relapses.

All of the respondents are currently employed. Five work full time. Their occupations include a chemical engineer, self-employed farmer, executive recruiter, collection agent and a worker for a mutual fund company. Two respondents work part time at school , one in a lab, and the other in a classroom with young children.

Others are doing internships for school. One works at a youth-service agency, and the other is a treatment counselor who works with mentally ill patients. One respondent is a part-time filing clerk. One respondent likes his job, because it is “stress-free”, while another says that because most of his farm work is done on a tractor, it hasnt prohibited his work performance in anyway. He happily reports that:

I can still do all the strenuous details like shoveling, lifting and pitchfork work that I used to before the onset. If Im really exerting myself, my eyes will go a bit blurry. So I try and take things easy and take breaks. This has been sort of hard because Im used to working in a manner where I just go all out and hardly slow down.

Future plans

All of the respondents reported that they planned on having a family. Six people reported that their decision has nothing to do with having MS, and they felt that their disease would not have much of an effect on raising children. The remaining respondents expressed a little bit of concern. One said that “Right after birth, one supposedly has a period of pretty bad symptoms. Who knows! I am a little concerned that if I get worse, there could be problems.” Another respondent says that she definitely wants to have children because she feels that children can handle a disability better than adults. Another is planning to become pregnant soon, but wants to wait until she has been on her medicine for one year so that she will reap the benefits before she discontinues treatment due to pregnancy. One young man worries about the future:

I have always wanted to have kids. I just hope this disease wont affect my ability to provide for my family. At the worst scenario, and I am disabled enough not to work anymore, I should be well off enough in another fifteen years to be financially stable. Its hard to make plans for the future when you dont know what kind of physical shape youll be in.

Most respondents felt that MS has definitely enhanced their lives in some respect, while others are more ambivalent about it. Most of the respondents believe that having MS has made them look at life differently. They cite MS as having them take more pride in what they do, becoming more open, becoming stronger and more compassionate people, seeing other people have troubles and are worse off, and bringing them closer to God. Others cite not taking things for granted anymore and becoming more self confident. One respondent cites the accommodations that she has received such as money towards school and a lap-top computer. One respondent said: “It is a part of who I am. Ive learned a lot of self-confidence and I learned to love myself, MS and all.” Two respondents feel that MS has not enhanced their lives at all. One young man simply has come to the realization that “life is short and although MS is a terrible disease, things can be a lot worse.” Another respondent feels that it has given her a new perspective:

I would take a cure if there was one. The only positive is learning how I deal with it, seeing how strong I really am and how others react and deal with my MS. It takes a special person to deal with having it as well as living with {or} loving someone who has it. One respondent has taken an active role to make the best out of the situation. Being a young man living with the uncertainties of Multiple Sclerosis, I have found it difficult to meet individuals in similar circumstances. This prompted me to solve a problem for myself, and in turn, hopefully help others as well...I have decided to start my own organization that would allow others who have been affected by MS to interact with each other...I am always thrilled to be able to help others and to use something I can relate to in order to help out others is very powerful and uplifting. Multiple Sclerosis is not something I asked for, nor is it something that I want to have. To say that I do would be mindless... {but}, my life is not over and nor should it be for anyone else.

Chapter Four - Discussion and conclusions

This chapter provides a summary of the survey results. It also contains a narrative of my own experiences with Multiple Sclerosis. I also relate my own findings back to previous research. The final section of this chapter discusses future research and the practical implications that my research has.

Results summary

The majority of the respondents felt one of two ways when they were diagnosed. They either experienced negative emotions like sadness and confusion or were relieved that their symptoms had a name, and were not life-threatening.

Respondents experienced similar first symptoms. Many of them recall fatigue, some sort of numbness or problems with the eyes. Ninety percent of the respondents were on a medication for Multiple Sclerosis. Avonex was the most common with Betaseron coming in second. All of the respondents were affected by their medications. Some respondents were more bothered by the physical side effects, such as flu-like symptoms, while others reported other things like inconvenience.

Eighty percent of the respondents did not feel that they were disabled, even though all think about their MS often. Most agreed that they were mobile and independent, and therefore not disabled. This may be surprising given that respondents all report that they think about having Multiple Sclerosis everyday. They are prone to thinking about it when they feel physically ill or many times they are reminded by environmental factors such as when experiencing symptoms or dealing with medication.

Most respondents feel that having MS is stressful, especially when they are experiencing a relapse. They all deal with the stress caused by the disease differently. Additionally the majority of the respondents reported getting angry about having the disease. They deal with their anger in many ways, as well as direct it towards various people and things.

Yet, respondents generally saw themselves in a positive light. Most did not consider MS as an important feature of themselves. Their master status appeared to be that of a student, friend, wife etc. who happened to have MS. If the respondent included MS into their self-concept, it was often positive. One respondent said, “I see a girl who tries to be happy and who doesnt let MS interfere in her life.” Another respondent echoes her sentiment when he said he sees himself as “someone who does not let MS get them down.”

There were a range of responses that the respondents received from those around them. The majority of the respondents did not recall being embarrassed by having MS, and none of them could remember a time when they were discriminated against for having a chronic illness. Seventy percent of the respondents felt that people do perceive them differently as a result of their diagnosis. Experiences that respondents had with friendships varied. While some had positive experiences with supportive friends, others had friends with adverse reactions or friends who abandoned them. Some of the respondents have friends who are actively involved with their illness while others keep the illness extraneous to their friendships. About half of them report that their parents had trouble adjusting in the beginning to their illness. Yet, almost all of the respondents receive tremendous support from their families.

Social supports that the respondents have vary, while intimate relationships have proved relatively stable. When looking at respondents and their intimate relationships, I found that most of the respondents who were involved at the time of diagnosis, did not experience the dissolution or a major alteration of their relationships due to diagnosis. Respondents gather support from different people. Some cite husbands/boyfriends while others gather support from family or friends. Almost all of the respondents chose to make those close to them aware of their illness, and most stress their openness about it. Overall, respondents did not face significant obstacles in their education. The majority of the respondents have attended or currently attend college. About half chose not to inform their professors about their illness. Others who chose to notify them had mostly positive experiences. Having MS did not slow down the students. All will or have graduated on time. Those who will not graduate on time will be delayed by reasons other than MS. About half of the students reported having trouble with certain school related tasks like studying, due to MS.

All of the respondents agree that having MS will not deter them from having a family. Forty percent report some apprehension about it, but still plan on having families. Eighty percent of the respondents were able to report they gained something positive about having MS. Most of them cited that for various reasons they have become better people.

Narrative

My personal experience with Multiple Sclerosis is similar in some aspects to the respondents, and in other aspects, I cant believe that they have the same disease as I do. Each of our experiences are unique and I have been able to learn and gather strength from these amazing people.

I was diagnosed with relapsing-remitting Multiple Sclerosis at the age of 20, in my junior year of college. I never could have imagined that this would happen to me. I felt that I had already overcome a lot of adversity and was truly being put to the test as to how much I was supposed to handle. Sometimes I feel like I am being punished. After having eye problems for a month I ended up at a neurologist. I didnt understand why I just couldnt get new glasses. This was the first time I heard the word Multiple Sclerosis. He said that based on my physical exam it looked like I had Optic Neuritis, and based on my past medical history of unexplained vertigo episodes that MS was a possibility. I was scheduled for tests the next day. I remember being in a fog and not thinking much of it. I called my parents who were alarmed, and my father came up the next day to go with me to the hospital. I didnt understand what the big deal was. My optic nerve was inflamed and Id get some medicine and be fine. This was far from the truth. After testing was done, I was given a probable diagnosis of MS. I still didnt know what it meant, but gradually the pieces would fall into place with time...I am still waiting though, for it all to make sense...

I definitely still battle with denial. The major reason for this is that the biggest indicator of MS is when lesions on your brain show up in the MRI. I have none. I was diagnosed on the basis of other tests and past medical history. There is a small percentage of people with normal MRIs, and supposedly I am one of them. In the beginning, I kept thinking that I was just explaining everything wrong to my neurologist, and that I was just being influenced by what I had been reading on MS. I think sometimes that the doctors are wrong and that I really dont have this disease. I dont think I will be 100% convinced until I see those lesions or I become significantly worse.

The treatment for Optic Neuritis turned out to be IV steroids. The experience was horrible and the side effects were even worse than the condition it was treating. I wasnt myself for over a month, physically or emotionally. I was so caught up in the treatment that I still hadnt come to grips with the fact that I now had a chronic illness. That same year, I had a few more problems with my eyes and some vertigo. I was placed in the hospital for a few days to undergo a new treatment. Because my symptoms were relatively minor and we didnt know the course that the disease would take, I did not start on any maintenance medications. Rather, I was put on IV steroids when flare-ups occurred.

As time went on I developed some new symptoms. These included: vertigo, bladder problems, burning of the skin, aching hands, arms, and feet, and numbness in the hands. I am currently taking Avonex. Learning to self-inject has been one of the biggest accomplishments in my life. I never would have dreamed that I would be capable of doing this due to my intense fear of needles. But I have learned to inject and am so proud of myself. Physically, the medicine doesnt do too much to me, because I take sleeping pills so that I am sleeping during the side-effects. Being on this medication doesnt interfere in my life too much. Its more of an inconvenience, having to be home to do it and worrying about refrigerating the medicine. Yet, there is always the intense anxiety I get right before and after I do my shot.

Everyone close to me knows that I have MS. I am very open about it and freely talk about it. MS has become such a part of who I am, I have nothing to hide. I dont consider myself disabled. I think thats because my image of a disabled person is an older inactive person in a wheelchair on Supplemental Security Income. I guess I am disabled in the fact that I feel like a slave to this disease, mind and body, and am unable to shake that feeling. I think about my illness every single day, sometimes constantly, and other days, maybe only a handful of times. I think about it more often when I am having symptoms, or when things in general are not going well for me. But it never leaves my thoughts. When Im upset, none of what I say to myself has much of an effect. I try and think that I have a lot to be happy about and that it could be worse, but then I wonder “why does it have to be bad at all?”

MS causes me a lot of stress. I get stressed about keeping up with my school work when Im not feeling well. I also get stressed when I have to deal with doctors and insurance companies. Since it affects me emotionally just as much as physically, it is hard to forget about it. I definitely get angry. Thats probably the most prevalent feeling these days to me. I get angry when I feel sick and cant do what I would normally be doing. I get angry that I even have to deal with this at all. I get angry at everyone around me for having no “real” problems. I often find myself thinking that I wish they could all live in my shoes and see what its like. I dont get mad at myself, but rather at life in general. I have found myself sobbing “why me?” and “its not fair” many, many times. To deal with all these emotions, I talk to people about it because I dont know what else to do. I rely on my boyfriend, friends and family. I also rely on other people with MS, who I met through the internet because I feel they are the only ones who truly understand. There is some peace in that for me.

I've never been really embarrassed by a specific incident about having MS. Ive had my fair share of walking into things and stumbling, but I can usually laugh it off. The doorways are just too narrow. At times it was embarrassing having people stare at me when I was having eye problems and needing to wear sunglasses inside. I wouldnt say that Ive been discriminated against either, but I definitely have felt hurt by others treatment towards me. I found out that my ex-boyfriends father said “lets face it, she is sick”. That hurt a lot. This was someone whom I thought of as family. There was another time when several of us were watching the news and there was a story on a possible cause of MS. One person came in the room and said, “Theyll never find a cure for MS.”

If I had to describe myself in three words they would be talkative, perseverant and its a toss up between sick and strong. If I was looking down on myself I would see someone who is dealing with a lot, but is trying her best to be strong and accomplish her dreams.

Ive learned a hard lesson about friendship as a result of this disease. When I first became sick I felt like no one was there for me. Two of my good friends were abroad and the rest seemed to distance themselves from me. Whenever I would want to talk about it, I would, but they would not respond. My family just said that they didnt know how to deal with it, but I think that a true friend would learn how. I remember this one night when I was sick with vertigo and really wanted ice cream. There was a Friendlys across the street. I asked several people if they would get me some, and I would treat them to one as well. Not a single person in the house that I lived in would find the five minutes to do this for me. I was hospitalized at one point that year, and got no phone calls or visits. When it came time for me to leave, no one in the house would come pick me up until the Dean called them. After this, I became more and more withdrawn, angry and hurt. I felt like I had little in common with these people who didnt give a crap about me. I moved out of the house I was in, into a medical single in another dorm. Yet, I am now happy to say that I have an amazing friend. She isnt afraid to ask me questions about my disease and lets me talk freely about it. She sees me as the person I really am, and I know that she truly cares. My large group of acquaintances who know about the MS do not make it a point to ask me questions about it, or ask me how I am doing. I wish they would.

My family has been truly wonderful. They are supportive, and I know they would do anything for me. However, they handled my diagnosis harshly. I think that my mom tried to hide her feelings about it so that she would appear strong to me. I also think that she is still in denial in certain respects. When I decided that I wanted to go on medication, the Avonex injection, she was kind of stand-offish about the whole thing and initially not very supportive of my decision. I think to her this made it definite, her daughter had MS. That is difficult for any mother to accept. When I told her that I was going to be interviewed by a school and local paper about a MS project I had done, she asked me if I was sure that I wanted everyone to know my business. She said, “some people like to keep things private.” She doesnt talk about it as freely as I do, but I know that she is looking out for me and is being the strong one. My father was much more emotional about the whole thing. I think that he cried first when the doctor said I had MS. Even now, when I call him to complain or cry, he breaks down as well. He admits that he has been internalizing my disease. On more than one occasion he has said “I wish I could take it away from you.” I know that he feels helpless and guilty that I have this disease.

I get incredible support from my boyfriend. He knew about the MS before we were together. A short while after we were together, I got sick. He kept asking me all these questions so that he would know what to expect. My heart melted when I was using his computer and I saw that he had bookmarked the National Multiple Sclerosis Society. He took it upon himself to learn about the disease. After we had been together only a week, I asked him if he would sit with me while I did my injection. He had no problem doing this, and that symbolized to me his acceptance of me and my MS. When Ive been sick, he takes care of me like a mother hen. Emotionally, he is amazing. I often get angry, sad and scared and he sits there, holds me and talks me through it. He always tries to get me to laugh. He gives me so much strength and love. I am so fortunate.

I definitely feel that having MS has changed the way people see me. However, I think that my perceptions of this are different from the truth. One time, I was meeting my grandparents for dinner. When I walked over to their table, I felt as if they were thinking “theres our granddaughter with MS.” I feel like that is what people think about when they see me, although their actions do not reflect that. Maybe because I think about it all the time, it makes me feel that all those close to me do as well. I also think that people see me as incredibly strong, for dealing with MS and still being happy and successful overall.

Academically, its kind of ironic that the year I was diagnosed was my strongest year ever. I am going to graduate on time as planned. My professors have been amazing. I decided to tell them so that in case something happened, they would know ahead of time. When I was having a tough time coping with the diagnosis and friends reactions, I would sit in their offices for hours talking. One professor took me to a doctors appointment. Another is always giving me articles about MS that she finds. Many of them simply ask me how I am doing. When Ive needed extra time for assignments or special accommodations they are more than willing.

MS definitely does not make college easy. Its hard to read when your eyes hurt or you are experiencing vertigo. Its hard to sit through class and take notes when your finger is numb and you are having problems with your bladder. Its hard to keep up with demanding courses when you arent feeling well and need to just rest, and its even harder to concentrate when you are upset. Ive always been incredibly perseverant and dedicated to school work, so I get everything done and many times work too hard. Often, I dont let myself get the rest that I need.

I definitely plan on having a family one day and having MS is not going to change my decision. I get scared though, that if I get worse and my MS progresses that my boyfriend will not want to marry me. I worry that if I get worse I wont be able to take care of my children in the way I wanted. I worry that I wont be able to work, after all of these years of education, preparing for a career as a social worker. I think thats one of the scariest things about this disease, not knowing what the future will hold. I keep thinking that I am somehow invincible and that I will never get worse, but I bet thats what all those people sitting in wheelchairs thought too.

MS has definitely enhanced my life. Undoubtedly, its made me a stronger person (although I really dont have much of a choice.) MS has forced me to grow up a lot and has taught me what friendship and unconditional love are. It has forced me to intimately know myself and Ive probably learned more about myself than I ever wanted to know.

Most importantly, having MS has led me to doing this thesis, which has been incredibly therapeutic for me, and its made me really proud. I have learned a lot about this disease, but more importantly about the people who live with it. I no longer feel so alone because of the people I have met through my research. I also feel that I am able to give back something to them, as all have felt alone as I did. They are all anxiously awaiting my completed research, which I feel is long overdue.

Relating findings back to research

Overall, my findings confirm much of the existing literature, though my respondents are more positive about their disease than many older people with MS. Research has found that people experience many things when diagnosed with an illness. Some believe that they were given the wrong diagnosis, and others try to make symptoms disappear by altering their behavior (Register, 1987). None of the respondents in my study mentioned either, although several were relieved to find out that they did not have something fatal, which research indicates is common (Register, 1987). Additionally, they did report strains on friendships and family members as literature shows (Register, 1987). Research also indicates that MS patients diagnosed at an earlier age were more likely to say that friends withdrew from their lives. I was surprised to find that that many of the respondents maintained earlier friendships. However, some, including myself, had friends who drifted away. Research also indicates that a lot of people initially do not know what their diagnosis means. Several of the respondents in my study reported feeling the same thing. Research has indicated that many people worry about their disease progressing to a point where they would be disabled, or that they see the disease as temporary and believe that they will recover, as I initially felt (Charmaz, 1991). None of my respondents alluded to this fear or belief. Perhaps since they are a young population, they still may feel that they are invincible, or simply have a mild case of Multiple Sclerosis and welcomed this diagnosis after a long search for an explanation.

Research shows that patients with chronic illness experience five stages: denial, anger, bargaining, depression and acceptance (Murray, 1995). None of the respondents besides myself experienced any denial. Several did mention anger, while none cited negotiation. Depression was cited once, and most respondents appeared to have already reached the fifth step, acceptance. Most of them seemed to have come to grips with the fact that they had an illness, and proclaimed that they were not going to let it interfere with their lives. This is surprising that they reached their acceptance of the disease so soon. Maybe they still are at the age where they believe themselves to be invincible and do not feel that their illness will progress, hence there is nothing to worry about.

Research has indicated that chronically ill people are forced to redefine their self concepts (Charmaz, 1991). However, initially, chronically ill people may adapt to the sick role where they believe that they will get better eventually and do not need to change their self-conceptions. My respondents indicate that they did not plan on getting better, yet it was evident that most respondents had altered their self-concept (Charmaz, 1991). Contrary to what some would expect, most of them felt that they were perceived in a more favorable manner by others. As experienced by my respondents, most people feel that eventually, illness has a positive effect on their lives.

Research has found that family are a valuable resource for people coping with Multiple Sclerosis (Miller,1997). I found that 80% of my respondents rely on their family or husbands for most of their support. Researchers have additionally found that illness provides an accurate gauge with which to measure relationships with other people, and that some friendships are strengthened through the experience of illness (Charmaz, 1991). My research shows this to be true. Some respondents felt that their friendships were strengthened while others felt people drift away. People learned who would be there for them when they needed them.

It has been demonstrated that illness shades views of love, marriage and the future (Charmaz, 1991). My research affirms this. Some respondents intimate relationships were able to weather the illness while others were dissolved. Additionally, some respondents expressed worry about the future. Research has found that people who surround themselves by those who care, cope better with chronic illness (Walsh and Walsh 1989). This is evident in my respondents. All of them have a supportive network of family and friends and gather strength through them. None of them reported having any significant problems coping with their illness. Additionally, one study demonstrates that the most commonly used coping mechanisms of persons with MS include remaining optimistic, maintaining humor and trying to keep life as normal as possible (Miller,1997). My research shows this to be true for college aged individuals as well. Many stressed having positive attitudes and clearly, they all appear to have gone on with their lives the same as they would have without MS.

One study done of MS patients showed that there were several things that were determinants of overall quality of life. These included loneliness, fatigue, degree of chronic pain, duration of symptoms, stressful life events, and cognitive deficits (Murray, 1995). My respondents had good social supports and none of them felt lonely. Also, they did not report severe chronic pain and only one felt she had cognitive problems. Based on these determinants, my respondents have very good overall quality of life.

Uncertainty and unpredictability surface in the literature as being a major theme in Multiple Sclerosis (Miller, 1997). My research shows that the majority of the respondents did not worry about these things. They seemed to accept the fact that this was the disease they had, and that they would deal with it one day at a time. They did not appear to dwell on these negative aspects of the disease. Rather, they seemed to experience more stress and anger about things like school work, medications, and relationships with others. Perhaps because these individuals are not disabled by their own standards and try to keep their lives as normal as possible, they choose not to fixate on these negative aspects of the disease. There are several possible explanations for this. One may be that it is still relatively early in the disease for most respondents and the full range of emotions have not sunk in yet. They may not have experienced the physical ups and downs of the disease and therefore, are not as skeptical. Also, some of the respondents were so relieved that their diagnosis was “only” MS and not something life-threatening, so they may more readily welcome the disease short-term.

Literature shows that self-esteem can be affected by MS, and that most of the psychosocial burdens of MS occur in the first few years after diagnosis (Devins and Seland, 1989). The self-esteem of my respondents did not appear to be affected greatly, even though most of them had been diagnosed for less than four years. Many even reported that their self-esteem and confidence has increased as a result of their disease. It can be thought that since the respondents in my study generally received positive and supportive reactions from those around them, perceived themselves positively, and did not have symptoms that were very debilitating that they were able to feel good about themselves.

Research indicates that people try to keep illness at the margins of their lives and outside the boundaries of their self-concepts (Charmaz, 1991). This is true for young people with MS as well. My respondents rarely identified their self-concept as incorporating MS. They first thought of themselves as caring, intelligent, outgoing , not as sick, depressed or troubled. However, literature also indicates that people diagnosed with a chronic illness often feel a loss of self (Charmaz, 1991). This is not reflected in my respondents. They appear to actual re-organize their concepts of self and now are stronger than before.

Research has found that with time, illness had a positive effect on ones life. This is clearly demonstrated by young people with MS. They all seemed to gain something positive out of their illness. Yet, many of them were diagnosed recently and still gained something. It did not take them a large amount of time to do this. These young people were able to adjust fairly quickly to their disease.

Literature demonstrates that how much a disease impacts ones life depends on attitudes and support networks more than the physical aspects of the disease (Murray, 1995). My respondents all had strong support networks of family, friends and significant others, and as a result of these strong supports they were able to maintain positive attitudes. Therefore, their lives were not significantly negatively altered as a result of having Multiple Sclerosis.

Literature shows that college is a time to find out who you are and develop as a person (Pascarella and Taranzino, 1991). Charmaz was correct in asserting that ones age, marital status and type and extent of disability affects how he/she adjusts to a chronic illness. Yet, my research shows that this process was not drastically altered by having Multiple Sclerosis. Although respondents had to deal emotionally and physically with additional heavy burdens, they were still able to develop strongly as people and struggled to incorporate having Multiple Sclerosis into their self-concepts. They are learning to grow with their disease instead of fighting it.

Future research

Though my study provides insight into the lives of young men and women with Multiple Sclerosis, there is much more to be learned. Future research needs to address several things. Young college-aged people with relapsing remitting Multiple Sclerosis are a very little studied group. Most research focuses on an older population who have more severe forms of the disease. This young age group has been neglected. Research needs to examine what it is that makes these young people cope and adjust to their diseases as well as they do. Future research needs to explore this adaptation to MS further. One aspect to be looked at is when did they adapt their positive outlook? Did it develop gradually over time, or was there one defining moment? Research should examine if over time, as these young people grow up and establish families and careers, if they are still successfully coping with their disease and maintaining positive attitudes. Research also needs to study the friends and family members of this group to find out how they give the incredible amount of support that they do to their loved ones with MS. Additionally, all of the respondents in my study had relapsing-remitting MS. Do young people with other forms of the disease cope differently and have different attitudes?

I believe that health educators need to be aware of the fact that many people first experience their first symptoms of Multiple Sclerosis as teenagers. In health class, students are taught about AIDS and drugs but they are not taught to recognize the signs of MS, or any other disease. Because people are not aware, often symptoms go untreated for years. Myself and others with MS could greatly benefit from earlier medical intervention, especially with the new treatments that are available which slow down the progression of the disease. Ninety percent of my respondents are aggressively treating their MS with either Avonex or Betaseron. Perhaps since they started these treatments while they were young and in the beginning stages of their disease, they are not experiencing certain symptoms, or their symptoms are reduced in severity, which has a positive effect on their body and therefore their overall mental state.

Practical implications

There are many practical implications that my research has for the medical community, friends, family, professors, and the general public. Doctors need to be aware of the fact that their patients need to be spoken to as people and not as diseases. Young people with MS do not see themselves as merely a disease, but as strong and wonderful people who happen to have MS. They need to be aware of young patients fears about medications and new symptoms, and take the time to discuss such issues that are not of immediate and pressing medical concern. Because it is these things that the patient needs to learn to live day in and day out. For example, one week I started having two completely new symptoms. I was very scared and sought out the help of my neurologist. I described my symptoms and he said a bunch of “hmms”, and told me he was going to call in a new prescription. I hung up the phone in a daze. I had no idea what to expect from these new symptoms, or why they even occurred at all. I didnt understand what the medication was supposed to do or how long I would be on it. I had none of my concerns addressed because my physician has a very authoritative manner that intimidates me. Unless one actively seeks information, they will not be supplied with it. Since not all patients will do this, especially younger ones, physicians need to learn how to provide more information.

Friends of those with MS need to educate themselves about the disease so that they can better understand emotionally and physically what their friend is going through. They need to learn not to be afraid of talking about the disease, and asking their friends questions about it. For many college students who live away from home, friendships are their primary form of support. They need to offer their help to their friend and offer their ear to listen. Many young people find talking about their illness therapeutic.

Family members of young people with MS need to learn to not be afraid to show and talk about their emotions. They should not pretend that they are being strong because their child can see right through it, and they desperately need this support. They need to express their fears and concerns to their children. Family members also need to educate themselves about the disease so that they are able to advocate for their loved one, offer suggestions, and provide guidance. They may want to receive some type of counseling so that they are able to effectively come to terms with, and understand their own emotions, and therefore, they will be able to be there to help their child with theirs.

Significant others of persons with MS should do their best to stress their unconditional love for their partner, for there is an underlying fear that if they get worse, their partner will leave them. They should not pretend to understand the feelings of the one with MS, but rather always be there to listen. They should try to maintain a realistic but positive attitude towards the illness and be able to validate and not ignore the fears of their partner. It is also important to have their support at Doctors appointments, tests, injections, etc., so that the person with MS does not feel that he/she has to go through it all alone.

Professors of college students with MS need to provide any necessary accommodations for their student and make themselves approachable to the student so that they do not feel like their requests will be denied or that professors will think that they are trying to take advantage of them. They should also tell the student that they are available to talk with and listen to their student, as it can be helpful to the student to talk with someone whom they respect outside of friends and family. Professors can give them unbiased advice and contribute overall to the support system of the young person with Multiple Sclerosis.

Most importantly, there needs to be acknowledgment that this special group of young people with MS do exist separately from their older counterparts, and that they have a lot to contribute. They are strong individuals who can demonstrate ones ability to overcome diversity and emerge a better person. There needs to be more support by the MS community for these people who often feel that they are alone with this disease due to their young age. MS support groups need to be created for young people, as many are hesitant to go to existing support groups because they feel they have little in common with older and disabled people. Having the support of others with MS is invaluable, as I have learned. When coping with my emotions and physical experiences, it feels so great to have people my age, who not only understand what I am going through, but are able to validate my experiences and offer friendship and support.

When I first initiated contact with my respondents, they were all more than willing to participate in my research. But even more so, they were so excited to have found somebody their own age, who like them, was leading a “normal” life with Multiple Sclerosis. They were thrilled that somebody cared about them and what they had to contribute as young people with MS. They repeatedly ask me when my research will be complete and available to them. For the first time ever, these young people will be able to read about themselves and know that they are not alone. I thank them for their showing me their strength, and for showing me that my life is not over for it has just begun...

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