Dealing with Emotions in MS
A diagnosis of multiple sclerosis can bring about a huge range of emotions. Being unique individuals, everyone has their own approach on how to deal with them. Please keep in mind that not everyone experiences the same emotions, or handles them in the same way. What follows are some of the most commonly experienced emotions that people living with MS and their families experience in varying degrees at various times.
In 1969, Elisabeth Kubler-Ross formulated a sequence of five stages that people go through when confronted with devastating news. Although there has been much debate and several variations of those stages, based on her interviews with patients, they are:
- Denial (not me!)
- Anger (why me?)
- Bargaining (for more time)
- Depression (over losing everything and everyone)
- Acceptance (peace)
What many people fail to take into account is that, with the stages of coming to terms with the diagnosis, there are others, such as family and friends, who have their own stages or phases to go through, and more often than not, they're not in sync with each other.
Regardless of the kind of MS a person develops, emotional reactions are likely to be similar to the feelings reported by individuals with other chronic diseases. Disbelief, fear, anger, depression and guilt are among them.
Many self-help books dealing with chronic illness place a strong emphasis upon regaining control of one's life. In practice, this may translate into trying to ignore disabilities. The result can be destructive. For example, refusing to accept the need for walking aids such as crutches or canes can result in falls. A battle with MS should not become a fight with oneself. Sometimes the best way to improve a situation is to practice letting go of the need to control.
Some common emotional reactions
Fear or apprehension
Fear is a very common, very understandable initial reaction to chronic illness. The diagnosis implies a lifelong condition and long-term adjustments. It is reasonable to fear pain, disability, and the unknowns of an illness. For many people, the greatest fear is losing control of their lives. Having control over one's life is closely tied to self-image and self-respect. These are not easy issues to deal with.
Denial
According to the National Multiple Sclerosis Society (NMSS) in the USA recent studies of people with chronic illnesses have concluded that denial can be a positive coping strategy as long as it doesn't interfere with proper treatment and self-care. Denial is a normal reaction, especially at the time the initial diagnosis is made, or later, when MS has been quiet for a period of time. To the extent that denial allows people to set worries aside, it can be a positive "time out".
Grieving
It is essential for people with MS to mourn their losses. Mourning can actually help the process of adjusting. The loss, which occurs when a person can no longer function, is in some ways, as real as the loss of a body part. Grieving needs to be accepted with patience and compassion by both the individual with MS, as well as family and friends. Grieving usually eases with time. This adjustment is ongoing and does not follow any calendar or set of stages.
Depression
The changes imposed by a chronic illness may periodically lead to bouts of depression. This is not uncommon. About half of all people with MS must deal with depression at some point during their lifetime.
Depression often goes unrecognized in our culture because there is often a taboo against expressing negative feelings, or to see depression as a sign of weakness.
If the person with MS has a history of depression, she or he will be especially vulnerable. In some people, depression is actually caused by damage MS has caused in the central nervous system. It also may be from side effects of some MS medications.
It's a fact of life: Most people experience feelings of sadness or unhappiness at times but these feelings usually go away. With MS, as with other emotions, depression can be especially tough. If a person is depressed or loses interest in activities that were once satisfying, and these feelings persist for several weeks, then the person may be experiencing major depression. Other symptoms may include changes in appetite, sleep problems, fatigue or loss of energy, inability to concentrate or make decisions, inappropriate guilt or even recurrent thoughts of suicide.
Serious or clinical depression is a disorder that can be treated. After the dimensions of the depression have been evaluated by a professional, antidepressant medication and/or psychotherapy are usually recommended, and are usually effective.
According to the National MS Society, a recent study of a large group of people living with MS showed that after the initial adjustment phase, most individuals were able to achieve a positive sense of self-worth that continued throughout their lives.
Guilt
Feelings of "letting down" family and friends, not being able to accomplish usual tasks, or of somehow being responsible for developing this disease may overwhelm a person with MS. Young mothers with growing families (the most commonly diagnosed group) are especially vulnerable to guilt.
Children easily amplify a parent's feelings of guilt. Their anger and frustration, which usually stem from their fear of abandonment, can increase parental distress. Children or a spouse may not express fear or anger verbally, but it can be there nonetheless. These emotions are normal, but without good communication, these feelings can be destructive.
Feelings of guilt or shame may also be heightened when friends or relatives are short-tempered or resentful. This is more likely to happen when symptoms are not noticeable.
Everyone in the family needs a good understanding of what MS can do, both physically and emotionally. It's crucial for everyone to understand that no one is to blame for the problems MS has produced.
On the positive side, some people report that disability in a family sometimes encourages the development of compassion and helpfulness, especially in children. A stronger family bond can be the result.
What day is it?
Even when a diagnosis of MS is made, uncertainty doesn't end. People living with MS are aware that their symptoms can come and go without any warning. Often, family and friends think that, since you were doing fine last week, there's no reason for you to be affected so strongly this week.
Symptoms of fatigue and weakness can occur without a person showing obvious signs of them. When this happens, family and friends sometimes expect too much. Often, symptoms of fatigue are seen as laziness or a lack of initiative. Even someone who is confident and self-assured can begin to doubt her or himself. This is just another reason to keep the lines of communication open. You shouldn't expect others to know your feelings unless you've talked about them.
People with MS sometimes express emotions in an exaggerated manner. A person may laugh or cry more easily than before. A sentimental comment may cause tears. A dumb joke may provoke uncontrollable laughter.
These mood swings can occur because of structural changes in the brain brought about by MS. They can also be caused by medications such as high-dosage steroids. Regardless, they can be confusing and frustrating for family and friends. Not knowing what kind of mood someone is in from day to day can be stressful. For some people, medications can be effective. For others, psychotherapy or family therapy can be beneficial for understanding and coping with the emotions brought about with MS.
You, your family, and MS
Yes, like it or not, MS is part of the family now. Like that outcast relative that no one wants to acknowledge, let alone be around. Since it's not going to move out anytime soon, it's best to find ways to live with it.
A broken leg or a bad case of chicken pox can cause disruptions in any family. Knowing that it's temporary makes it easier to deal with. A chronic disease such as MS is quite a different matter.
A diagnosis of multiple sclerosis affects everyone in the family. Roles can change, but a good communication system helps dramatically. People who are not prepared for the role of caregiver may feel like giving up before knowing just what that role is. A spouse may end up feeling more like a parent than a partner.
Caring for a person living with MS is sometimes a delicate balance. While certainly meaning well, family members try to do so much for the individual, they can make the person feel even more helpless. Having too much care can discourage a person with MS from coping more independently. Sometimes, other members of the family feel neglected. This is especially true with children.
When there are children in the family of an individual with MS, many emotions can come to the surface. Unfortunately, many more may not appear because of fear, doubt and uncertainty. Honest, thoughtful conversations should address the facts. Children might fear that the parent will die. They need to be reassured.
Depending on the age and capabilities of the child, he or she will probably have to take on new responsibilities. This can be a good thing, but care should be taken that the new responsibilities don't take away childhood. It's especially important to question the child. What are his or her fears? Does he know what MS is and what the future might be? Is she afraid of what her friends might think? Open dialogue can be reassuring. It's also important to remember that simple explanations can work well with younger children. If you're a parent, you probably know how much information your child can handle.
The circle of friends
Friends are important whether or not one has been diagnosed with MS. And, as we mentioned earlier, they have stages of acceptance to go through as well. The dynamics of friendships can change dramatically, for the better or worse. Many people are afraid to bring the subject up, especially if the person with MS hasn't spoken much about it. That person needs to take the first step! Let friends know that although things have changed, many others haven't. Let them know how you need them. Whether it's picking up some items at the store, or picking up a good conversation, they need to know.
It's important for people with MS to have at least one trusted individual to talk with about what MS is doing to their lives. If there isn't anyone to fill this role, then a counselor, spiritual advisor, or another person with MS may become a valuable confidant. The MS Society of Canada chapter, a doctor, nurse, or other professionals may provide referrals.
Work it out!
Exercise is well known to be crucial to staying emotionally healthy. According to the Multiple Sclerosis Society, many studies have found a positive relationship between exercise, mood, and improved thinking processes. The long-term consequences of reduced mobility on the heart, lungs, bones, nerves and muscles apply to people living with MS just as much as they do to the general population.
However, MS symptoms may temporarily worsen during exercise, and the resulting fatigue may last longer. In fact, some people with MS are advised not to exercise for these reasons. You should always check with your doctor before starting an exercise program. The MS Society cites recent studies of aerobic training by people living with MS who were able to walk, showing improved fitness and muscle strength, and reduced depression and fatigue. People in exercise programs not only enjoyed an improved sense of well-being, but for many, bowel and bladder function improved as well.
The exercise program agreed to by you and your doctor should be of mild to moderate intensity, with warm-up and cool-down periods. Exercise sessions should be brief at first, and lengthened as fitness improves. Try not to do too much, too soon. Recovery from post-exercise fatigue should occur within an hour.
Exercise capacity and recovery time are usually improved by keeping cool. It is best to exercise in a cool environment or to use cooling baths before and after sessions. One effective technique is to sit in a tub of tepid water and slowly add cooler water until the lower half of the body is noticeably cooled. There are also specially designed cooling garments available.
Relax and enjoy it!
Along with exercise, programs for physical and mental relaxation, such as yoga and meditation can be of great help. According to the National MS Society, techniques such as massage, progressive relaxation, tai chi, and using a mantra ("slow down" is good) can help establish a sense of well-being. Meditation and other relaxation techniques require practice and should be learned when stress is at a minimum.
It's the attitude
Chances are you've heard comments about the positive effects of a good attitude. Maybe even to the point that you don’t want to hear about it anymore! No one (very few, at least) can have a positive attitude all the time. Fatigue and depression can cause people to withdraw from activities they once enjoyed, and to have less contact with friends and colleagues. Soon, that can develop into a negative cycle. Reduced activity further erodes physical well-being which leads to reduced activity, more fatigue and depression. It can be a downward spiral if not addressed. You and your doctor should pay attention to these symptoms. Medications may be available, but try to remember the positive attitude.
Any doctor can prescribe medication and provide periodic examinations. Having a physician who can discuss personal matters and take the time to explain complex issues is another matter.
If you're a patient, you have the right to "shop around" for a doctor who is knowledgeable about MS and is willing to spend time listening to your concerns and needs. MS clinics have much to offer. Your local MS Society chapter can refer callers to local healthcare providers and facilities to help people living with MS find the quality medical care they need.
Speaking of doctors
If you haven't already done so, get on a therapy!
The recent Consensus Statement of the Canadian MS Clinic Network recommended that all eligible patients be treated as early as possible in the course of their disease.
Based on the recommendation of some of the world's most experienced clinicians, the MS Society of Canada is now advising doctors to prescribe, and people with relapsing-remitting MS to begin taking, one of the approved disease-modifying agents as early as possible following a definite diagnosis of RRMS. Approved drugs are Copaxone® (glatiramer acetate injection), Avonex® (interferon beta-1a), Betaseron® (interferon beta-1b), or Rebif®(interferon beta-1a).
Get educated on the therapies. Empower yourself and talk with your doctor about which one is best for you.