Coping with an MS Diagnosis
People living with multiple sclerosis experience many different emotions over the course of the disease. Some of these are reactions to the stresses and challenges created by this chronic, unpredictable illness, while others seem to be symptoms of MS itself.
No two people or families living with MS react to the disease in exactly the same way or face exactly the same challenges. Nevertheless, there are certain reactions that seem to be very common.
Initial reactions to the diagnosis
The diagnosis of MS may produce shock, disbelief, anger, fear, and denial—all of which are normal, predictable reactions to this kind of difficult news.
Shock: For some people the news is so startling and puzzling that they simply cannot absorb it. It may take several days or weeks for them to be able to think about next steps for dealing with this unwelcome intrusion in their lives.
Fear: For those people who know very little about MS—or those who have known someone with very progressive, disabling MS—the first reaction may be fear or even panic. They may be quick to assume the worst about their health, their life, and their future.
Anger: It isn’t at all unusual for people to feel angry and frustrated by their diagnosis. Certainly no one asks to get MS, and many react with resentment to the unfairness of being diagnosed. “Why me?” is the first question on many people’s minds.
Relief: For anyone who has had to wait months or even years for an explanation of puzzling, uncomfortable symptoms, getting the diagnosis can be a relief. Particularly for those people who were worried about having a brain tumour or some other potentially fatal disease, the diagnosis of MS can feel like welcome news. The news may also provide relief for anyone who has been told, “There’s nothing wrong with you—it’s all in your head.”
Denial: Some people react to the diagnosis by shoving it under the rug—telling themselves that it couldn’t possibly be true or that the doctor has made a mistake. Denial can be a very useful and effective coping strategy during the early days of a chronic illness, allowing a person to take a brief “time out” before beginning to deal with the realities of MS. However, denial that goes on for weeks or months can also get in the way of important treatment decisions and self-care strategies. Although physicians will generally provide their newly-diagnosed patients with information about treatment options, they recognize that some people want and need the time until their follow-up appointment to get used to the idea of starting treatment with an injectable medication—particularly if their symptoms have disappeared and they feel like themselves again. Since most people are diagnosed with the relapsing-remitting form of MS, denial is common during early periods of remission, when symptoms partially or completely disappear.
It is important to remember that any and all of these reactions are “normal.” Each person is going to react in his or her own way to the diagnosis of MS. Keep in mind, however, that there is help available if any of the feelings become unmanageable or too uncomfortable. The MS Society of Canada offers a variety of information and support services—in person, by phone, and online—to address these needs.
Like people’s initial reactions to the diagnosis, their longer-term reactions will vary considerably as well. Since everyone’s MS is different, there are no predetermined stages of adjustment and no right or wrong ways to feel about it. However, there are some very common reactions that most people will experience at one time or another over the course of the disease. And they may find these feelings recycling as the disease goes through its characteristic ups and downs of relapses and remissions or causes new or worsening symptoms.
Grief: This unique kind of sadness is a normal reaction to change and loss. Although most people associate grief with the loss of a loved one, it’s also a common, healthy reaction to any change that threatens one’s sense of self. In other words, people with MS may find themselves grieving initially over the diagnosis of a chronic illness, and then experiencing those feelings again any time that MS causes a new symptom or interferes with their ability to do something that’s important to them. Grieving is an important first step in any person’s efforts to cope with a chronic illness.
As the pain of grieving gradually eases over time, a person is able to begin making positive adaptations to whatever changes have occurred. The cycle of grief and adaptation will continue to repeat itself whenever significant change or loss occurs.
Anxiety: Feelings of anxiety are very common in MS. Whether people are concerned about getting to the bathroom on time, staying in school, getting a job, or becoming severely disabled, they tend to feel anxious when they can’t be sure what’s going to happen next. Learning how to live with the unpredictable ups and downs of MS is a significant challenge for anyone affected by this disease.
Anger: As the disease runs its course, people may find themselves feeling very angry about all the changes it brings to their lives. Although anger is a common and normal response to changes and losses that feel unfair, many people find it difficult to know what to do with it—how to handle and express their anger in ways that are productive and don’t spill over onto family members, friends, and colleagues. The goal is to find ways to put that energy to good use, to channel it into effective planning and problem-solving. Healthy anger can fuel a lot of productive creativity.
Guilt: If and when the disease begins to interfere with activities at home or at work or school, people may begin to feel that they are letting others down. They may worry that their family and friends are having to take on extra responsibilities. They may worry about not pitching in by doing chores or earning a stable income. If the disease progresses in spite of a person’s best efforts to manage it, they may feel guilty about that, as if the disease is their fault or that they could have made a difference by trying harder.
While each of these reactions is a natural response to the upheavals caused by MS, they can, themselves, begin to feel unmanageable. Grief can feel so overwhelming that it becomes difficult to distinguish it from depression. People can become so anxious about the future that they can’t deal with how things are at the moment. Anger can begin to drain a person’s energy and interfere with important relationships. And the guilt can rob a person of the confidence and self-esteem he or she needs to deal with the challenges of the disease.
Whenever these common feelings start to feel unmanageable or overwhelming, it’s important to know that help and support are available. For most people, the opportunity to talk about them in a supportive setting—in an online message board, at a support group, or with a knowledgeable counsellor—can help relieve the feelings and channel them into productive problem-solving.
Family members have feelings too
As if all these feelings weren’t challenging enough for one person, it’s important to keep in mind that family members and close friends are experiencing a similar set of emotions. Everyone who loves someone with MS needs to figure out how to respond to it. Since no two people handle feelings in exactly the same way, the result is a family and community full of strong emotions that are being expressed in different ways at different times. It’s a lot like a symphony orchestra without a conductor—everyone is playing his or her own tune, not necessarily in synch with anyone else.
All these feelings pose some significant challenges for family members and friends:
- It’s important for family members to acknowledge that they are all affected in one way or another by MS. Like a pebble thrown into the water, the disease creates its own ripple effect on the whole family’s everyday life.
- Family members also need to acknowledge and respect each other’s coping styles and strategies. People tend to react to stress, express feelings, and problem-solve in very different ways—and one person’s style isn’t necessarily any better or more effective than another person’s style. While acknowledging these differences, family members will benefit from learning how to communicate comfortably and respectfully in spite of them. Talking comes more easily to some people than others; the challenge lies in making sure that everyone’s feelings are recognized.
- Teamwork makes everything easier. By making MS the “common enemy,” family members can direct their frustrations at the disease rather than each other, and work together to figure how best to handle the changes in their lives.
The emotional changes that come with MS
Emotional changes are thought to result, at least in part, from the damage to the nervous system caused by MS. In other words, these changes are considered by MS experts to be part of the disease process itself rather than just a reaction to the challenges it poses.
Mood Swings. People with MS report feeling more sensitive and moody, and family members may find their loved ones to be cranky at times, quick on the emotional trigger, irritable, and unpredictable in their emotional responses to things. Knowing that these mood swings can be part of the disease as well as a reaction to it can make it easier for everyone to understand and tolerate them. But mood swings aren’t comfortable for anyone, so it’s important to let your health-care team know about them. A mental health professional with expertise in MS can teach your strategies for managing uncomfortable mood swings. For people whose mood swings are more extreme, medications are available to help control them.
Depression. While everyone has occasional days of feeling blue or down-in-the-dumps, major depressive episodes (also known as clinical depression) are more common in MS than in the general population or in other chronic illnesses. In fact, more than half of people with MS will experience a major depressive episode at some point over the course of the disease. MS experts believe that depression is a symptom of MS as well as a response to it. This is supported by the fact that depressive episodes can occur early or late in the disease, regardless of a person’s other symptoms or level of disability. It’s important to know, however, that people who are in the midst of an exacerbation (also called a relapse or attack), or who have a personal or family history of depression, are at greater risk for a depressive episode.
Depression is not a sign of weakness—it is a medical condition that can and should be treated because it interferes with a person’s comfort and ability to function. And living with MS can be challenging enough without the added burden of a depressed mood.
Depression continues to be under-diagnosed and under-treated in people with MS. There are three primary reasons why this is so:
- Several symptoms of depression overlap with common symptoms of MS. Therefore, it may take a psychiatrist or psychologist with expertise in MS to sort out the various symptoms and confirm the diagnosis.
- Many people are too embarrassed or ashamed to admit these kinds of feelings to their doctors, as if they were something to be ashamed of.
- People mistakenly believe that anyone with a chronic, unpredictable illness like MS would or should be depressed—and this is definitely not the case.
Everyone with MS needs to grieve over whatever losses the MS may cause, and everyone has days of feeling down or discouraged, but not everyone experiences many symptoms of major depression. For those who do, the good news is that depression is a treatable problem. Most experts agree that a combination of psychotherapy and antidepressant medication is the most effective treatment strategy.
Episodes of uncontrollable laughing or crying (also called pseudobulbar affect) are another symptom that can be caused by MS. These episodes occur independently of how a person is feeling emotionally, and they start and stop unpredictably. In other words, you may find yourself laughing inappropriately at a funeral, while actually feeling sadness and loss, or you may be unable to stop crying uncontrollably while watching a comedy. Individuals with MS and their family members understandably find these episodes frustrating and embarrassing, and employers or teachers may find them unacceptable. Fortunately, uncontrollable laughing and crying can often be managed with medication, so it’s important to bring this problem to the attention of your health-care team.
A word about MS medications and mood
The medications that people take to manage MS or its symptoms can also affect mood.
Steroids and mood swings. The corticosteroids that are sometimes prescribed to treat MS exacerbations cause some people to experience fairly significant mood swings—from bubbly, energetic highs while on the medication to irritable, depressing lows as it is being tapered or stopped. While not everyone experiences these mood changes with corticosteroids, and not everyone has the same experience each time they are prescribed, the mood changes can be very uncomfortable. For those people who experience significant discomfort, a physician can prescribe a short course of a mood-stabilizing medication.
Interferons and depression: All of the beta interferon medications that are used to treat MS carry a warning about depression. Although studies have failed to show a clear connection between these medications and depression in people with MS, there have been reports of people experiencing significant depressive episodes. Therefore, anyone who has a history of depression should discuss it with their doctor before starting one of these medications. And any person who experiences a significant mood change while taking an interferon should alert the doctor immediately. Glatiramer acetate,Tysabri, Gilenya and other disease-modifying medications used to treat MS, have not been reported to affect mood.
What we know—and don’t know—about stress and MS
A common question on people’s minds is whether stress or the emotions that accompany it can cause MS or make it worse. We still don’t know what causes MS, but there is no evidence to suggest that life stresses are the primary culprit. Research has shown that stress interacts in complex ways with the body’s immune system, but the relationship between stress and disease activity or disease progression is unclear.
The difficulty in sorting this out seems to come from the fact that not all stress is the same. For example, studies have shown that an acute, traumatic stress may have no effect on the disease course, or may even be associated with reduced risk of exacerbation, while chronic stress/distress may be associated with an increased risk of exacerbation.
Whatever the relationship turns out to be between stressful life events and the course of MS, it is also likely to differ from one individual to another. There is ample evidence to suggest that coping strategies differ markedly from one person to another, and that some people are more resilient to life stresses than others. This means that trying to manage or control MS by reducing the stresses in one’s life is not the best strategy, for several reasons:
- The impact of stress on the course of MS is unclear.
- Everyday life is filled with stressful events, most of which are out of an individual’s control. Trying to eliminate them can only lead to feelings of frustration and failure. And then people may feel guilty or inadequate if their MS progresses in spite of their best efforts to reduce their stress levels.
- The stressful events of everyday life are both negative and positive. School, for example, involves the stresses of deadlines and exams. Family life may be stressful because of arguments or illness, but also because of the arrival of a new baby or an upcoming holiday celebration. Eliminating all stress from everyday life would rob it of everything that makes life exciting, challenging, and worthwhile.
- While there is little or no evidence to suggest that controlling stress can reduce disease activity, there is ample evidence to show that the available disease-modifying medications can. Regular use can reduce both the risk of relapses and the development of new lesions as shown on magnetic resonance imaging.
Strategies for Managing Stress
Everyone, with or without MS, feels and functions less well under stress. The best way to deal with the stresses of everyday life is to learn how to manage them more effectively, by eliminating those that aren’t essential and finding more comfortable ways to deal with those that are.
A good place to start is by carefully tracking your activities for a week or two to see how much time and energy are being taken up by things that don’t really matter. By figuring out what’s most important and meaningful, it becomes easier to establish clear priorities and decide what to keep doing and what to let go. A tidy room or a perfectly sorted mp3 collection, for example, may just not be as important as hanging out with your friends.
The next step is to find a stress management technique that fits your tastes and lifestyle. For one person it may be exercise or meditation; for another it may be listening to music or getting together with a friend. The point is to find whatever healthful strategy provides relief from the pressures of everyday life—and then make time for it on a regular basis.
Some helpful tips for coping with your MS
MS is a complex, unpredictable disease that can pose significant emotional challenges for even the strongest, most resilient people. It will probably take time to find the coping strategies that work best for you. In the meantime, here are some suggestions:
Be an active partner in your own health care. Seek out good information about MS and its management—the more you know, the more prepared you’ll feel to make the treatment and lifestyle choices that work for you. Find a physician you are comfortable with: any doctor can prescribe medication and provide periodic examinations, but having a physician who can discuss personal matters and explain complex issues is another matter. It is legitimate to shop around for a doctor who is knowledgeable about MS and able to spend time listening and educating patients. Multi-disciplinary MS clinics also have a lot to offer both families and individuals.
Appraise your MS with realism and flexibility. Allow yourself to grieve over whatever changes or losses the MS brings your way. In time this will free you to take steps to create new options for yourself. Some people stubbornly try to do all the things they did before, in exactly the same way, regardless of their symptoms. A realistic approach means letting go of some activities, or learning how to do them differently, and/or taking on new ones that are more feasible— and thus more enjoyable and rewarding.
Maintain strong bonds with family and friends. Strong connections with others are an important ingredient in a fulfilling life whether you have MS or not. Most of us need to know we are loved and cared for, and we also need to love and care for others who are important to us. Although MS may alter some of the things you’re able to do with and for other people, it’s important to maintain meaningful relationships in which you’re on both the giving and receiving end.
Keep a sense of purpose by setting goals. Personal goals help point you in the direction you want to go and provide a feeling of accomplishment and pride when you get there. An unpredictable disease that saps your energy and alters your ability to get things done can make progress towards your goals more difficult. It may even make it necessary for you to re-think previous goals and develop new goals over time. Whatever course your MS takes, it’s important to set your sights on things that are important to you. Working toward your personal goals, whatever they may be, will help you maintain your self-confidence and self-esteem, and feel more in control.
Talk about your concerns and feelings. It’s important for to have at least one trusted confidant, with whom you can talk with about how MS is affecting your life. While this may be a relative or friend, many people find it helpful to have someone—perhaps a counsellor or spiritual advisor—who is less personally involved and therefore more objective. The MS Society, a doctor, nurse, social worker, or other professional can provide referrals. Most people find that talking with someone from time-to-time lets off steam and helps them develop perspective.
Most people also talk to themselves in ways that can affect their feelings in a positive or negative way. For example, a shift away from saying to yourself “This situation is impossible”—and towards saying “I think I can handle this”—is a major step toward a healthier, more satisfying life.
Find an exercise regimen that’s right for you. A regular exercise program is a key strategy for maintaining emotional health. Many studies have shown a positive link between exercise and improved moods. And the long-term benefits of exercise on the heart, lungs, bones, nerves, and muscles apply to people with MS just as much as they do to the general population. Studies of aerobic exercise (geared to a person’s level of ability) have shown that training improves fitness and muscle strength, and reduces depression and fatigue in people with MS. Talk with your doctor about what kinds of exercise would be best for you.
Build relaxation into your schedule. Together with aerobic exercise, programs to enhance physical and mental relaxation, like yoga or meditation, can be extremely helpful. Other techniques, such as massage, progressive relaxation, and using a mantra can help establish a sense of well-being.
Avoid the negative cycle. Fatigue and depression can prompt people to stop doing things they once enjoyed and reduce their contacts with friends. What begins as feeling tired and blue easily becomes a negative cycle, in which reduced activity reduces physical well-being, which in turn leads to less energy for activity and more fatigue and depression. Medication to relieve fatigue or depression may be needed to break the cycle once it is established. But awareness of the cycle is the first step toward dealing with it.
Don’t underestimate the value of your spiritual beliefs. Faith is a very important part of many people’s lives. Studies of people with chronic illnesses have found that those who have a strong religious or philosophical belief system do better than those without such a source of support. Even the simple act of regular attendance at spiritual gatherings appears to improve coping, perhaps because it gives those individuals a feeling of belonging and a sense of group support. And for those who choose not to attend meetings of this kind, support groups and other social networks may meet the same need.
Plan on having some fun. Fatigue or a too-busy schedule make it easy to neglect the lighter side of things, but relaxing and hanging out with your friends reduces stress and contributes to overall health and well-being. The people who are able to laugh and enjoy humour generally feel better about themselves and manage their lives more effectively. Humour goes a long way toward taking the sting out of some of the more challenging aspects of life with MS.