Psychological Aspects of Myasthenia General Information Leaflet 4

Someone once said that life is what happens to you while you're busy making other plans. But what happens when your plans are interrupted by the diagnosis of MG? How you feel, how well you can cope, is determined by many factors such as who is around to help you (medically, physically and emotionally), such as the severity of your symptoms and how long they've been bothering you. For example, if you've had unexplained, distressing symptoms for a long time and finally found out what is causing them and what medications can alleviate your difficulties, you probably will feel somewhat relieved. For many other patients, however, the onset of illness and diagnosis of a disease that is not likely to disappear causes a great deal of anguish. How is a hard working executive looking forward to advancing his career going to feel when severe weakness slows him down. How is the mother of three young children going to cope? How is a child to feel when he can't keep up in gym and "be like other kids?"

The IMPACT PHASE

The time when myasthenia is diagnosed, is often characterised by fear and confusion and a sense of shock. "This can't be happening to me. There must be a mistake - a lab mix up, a doctor error". The doctor insists you've got MG and explains what the disease is, but your mind is a TV screen that keeps going blank. You hear the words and then they're gone. You may feel detached, as though this is all happening to someone else. Some people experience a temporary denial - they can't face the diagnosis head on all at once, so they ignore or minimise the implications of the diagnosis, forget to take medication and go "doctor shopping" to find a doctor who will tell them they are healthy. It can take a little while before the feeling of disbelief passes and reality sinks in. Now patients and families start asking "why me?" or "why us?"

Anger and resentment set in, but how do you attack a diagnosis ? Some patients become angry with their doctors. Some families become angry with the patient. Both patient and family feel helpless and inadequate in the face of a powerful enemy. The diagnosis causes incredible changes. It seems like the person you were in the pre-illness days has disappeared.

You start to grieve for what you've lost. The person you'd hoped to be in the future may not come to be. Nothing seems certain any more, only the weakness which keeps reminding us that things aren't OK any more. Sadness and depression can set in.

This is the PERIOD OF TURMOIL

You know how people don't like to get dents in a new car. Well, such dents are trifles when compared to an "imperfection" in one's own body. The disease blemishes our health and reminds us of how vulnerable we are, how unpredictable life is. It may challenge our ability to remain independent and in control of our lives. We become "less than perfect" in a culture that places such an emphasis on physical perfection, health and fitness, athletic ability and independence. In addition, myasthenia is not quite like other disabling conditions such as amputations which are always obvious to others. Myasthenia is often an invisible disability. People tell you how wonderful you look and only you know how hard it is to keep your eyes open, to climb the front steps to your house or brush your hair or chew your meal. You feel different from others. Sometimes it is hard not to withdraw from people who don't have to worry about MG and who don't seem to fully understand what it is like to have MG. Other times, healthy people themselves have trouble dealing with the illness, and after their initial help and calls and flowers and cards, they withdraw. A sense of isolation sets in, and this can be more painful than the disease itself. Still, the illness won't go away. It forces changes between friends at home and at work. Yet even so, with time, most people learn to adapt. They may never accept the illness, but they learn to adjust to it and to reconstruct their lives.

RECONSTRUCTION

Means returning to the highest level of wellness you are capable of, psychologically and physically. It involves a realisation that inside one does not change because of a diagnosis. If you can only see the disease, you've become blind. Anyone with vision sees the person residing within. All has not been lost. One has to construct a satisfactory self image that incorporates the myasthenia.

The adjustment process may also involve role changes. It may require developing new skills and discovering new satisfying activities. It involves seeking relevant information from doctors, social workers, physical therapists. It involves eliciting reassurance and emotional support from family, friends and medical personnel. It involves pacing oneself and setting realistic goals. It involves identifying one's assets. More importantly, it involves the maintaining of a good sense of humour and the maintaining of hope. This doesn't mean that intermittent setbacks and depression can't or won't occur.

Any time there is a worsening of symptoms or hospitalisation, or the anniversary of the day you were diagnosed rolls around, or you visit the doctor, or you see others doing what you can no longer do - you can slip back into turmoil. Having myasthenia can be like riding an emotional roller coaster; one day you're feeling strong and your spirits are high, and shortly thereafter you are down in the dumps again. The relapses can be particularly taxing, and in periods of crisis, intense disappointment and sorrow have got to be expected. But these temporary setbacks don't mean the person has forfeited all claim to hope. What can you do to keep hope alive ?

Here are what I call the 5C's - KEYS TO SURVIVAL

1. COPING ATTITUDE
   
   Develop a positive attitude if you can and approach the disease as a challenge. Try to view yourself as a person with a problem, not as a person with troubles. People with troubles can only complain and be unhappy. People with problems can look for solutions.
   
   
2. CONTROL YOUR OWN DESTINY
   
   Actively participate in your own care, and make decisions on your own to improve the quality of your life. If you feel a nutritionist would be a good idea, insist on a referral. You have the right to be heard and listened to and the responsibility to make your needs known. Take charge of your life.
   
   
3. COMMITMENT
   
   Commit yourself to a cause that is important to you, to something you value - whether it's your job, family, school, your health or a religious cause. Focus your energies on something or someone you care about.
   
   
4. CONFIDE IN OTHERS
   
   Share the burdens of your illness, allow yourself to ask for help and accept periods of dependency when necessary. Admit when you hurt. Allow yourself to feel and know that you will heal. Vent the pent up emotions. Try to maintain a good relationship with your doctor, if possible, and with other members of the health care team. Contact fellow patients and friends. Try to preserve important relationships with relatives, in spite of all the stresses imposed on the family unit.
   
   
5. HAVE CONFIDENCE IN YOURSELF
   
   Believe in your own abilities and inner strength. Seek all the information you can come by; be an informed consumer; and use all the resources and knowledge available.

YOU HAVE TO BELIEVE IN YOURSELF

Printed with the kind permission of the American Foundation of AMPS Garden State Chapter.

The Association does its best to ensure that the information contained in this leaflet is complete and up to date at the time of publication, but cannot accept any legal liability whether for any inaccuracy or otherwise.

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