Multiple sclerosis is known as a physical disease which affects nervous tissue and not as a mental disease. There are many medical phrases used in connection with multiple sclerosis such as ‘psychological overlay’ when describing symptoms, the ‘M.S. personality’ and ‘M.S. euphoria’. These do suggest that doctors realise that multiple sclerosis does have well observed mental effects. There is the frequency of misdiagnosis of multiple sclerosis as a psychiatric illness and there is also the medical impression that emotional problems cannot only be the results of multiple sclerosis but also the cause of relapses.
Multiple sclerosis and its related mental effects are so closely tied up together and it is known that physical damage is done to nerve tissue in the brain that sometimes I wonder if some of the more distressing mental effects of multiple sclerosis are not just medical or patients’ concepts but are actually due to damage to the brain. At times if you are going through a particularly trying period of fatigue and depression it might be a help and a comfort to be able to blame it on physical damage to your brain. It would at least absolve you from some of the responsibility and feelings of guilt that go with moods and behaviour which are trying, to say the least of it, for your family, and provoke a great deal of anxiety in yourself.
At other times the very thought that you might have some irreversible physical damage to your brain is quite horrifying. The demyelination can show up on an electroencephalogram so that it obviously could be quite widespread, and remarkably little seems to be known about the physical effects of the scattered demyelination. Multiple sclerosis as a crippling disease is the fact that everybody know about. Multiple sclerosis with deeply distressing mental effects is a disease about which little seems to be known and no sources of knowledge are available to which upset patients can turn for information and help.
Many neurologists have little doubt that emotional upsets can cause actual physical damage in multiple sclerosis, as well as worsening of symptoms which may or may not be due to actual physical damage in the nervous system. During an illness such as multiple sclerosis there is no doubt that you are more likely to have emotional upsets than when you are in good health. There are difficulties with fatigue, with adjustment in learning to do less, there are frequent family difficulties when Mum is less capable of doing her usual share and there is always a certain measure, variable indeed but recurrent, of personal anxiety. Whether one thinks about it consciously or not there is some apprehension about the future, about decreasing mobility and for some people a real fear of losing their independence.
Avoiding emotional upsets and tensions is one of the most difficult parts of living with multiple sclerosis. I think one has to be very clear-headed and almost brutal in facing the situations which are likely to cause emotional problems, preventing them if possible and minimising them if they cannot be prevented. For everybody the situations are bound to be different and of course the solutions must also be different. For everybody the same amount of honesty is necessary in facing up to the situations and the same sort of determination in finding possible solutions. Fatigue is probably the most important factor in exacerbating emotional problems. It is very much easier to be philosophical about marital problems, difficult situations at work, adolescent offsprings’ love problems and unexpected visitors, if one is not already overcired.
I have found that with a little clear thinking I have been able to do a few things towards reducing the situations that cause fatigue. I find car driving very tiring and because I have to drive long distances possibly get more tired by the anticipation that fatigue is inevitable. I decided if I could keep my mind off fatigue it might help and I listened some music while driving. It may not work for everybody but I find that if I can have gentle favourite music in the background when I am tired I am very much less aware of my fatigue. I now have the additional support of my son’s co-driving. Few mothers with cars have been so keen for their sons to be able to drive them! Whether it is all in the mind or not, that small problem of fatigue has been relieved a little. The only problem arises when I have one of my teenagers with me and have to suffer punk rock instead of floating blissfully through Beethoven’s Choral Symphony. However, one must not become intolerant and possibly in time my tastes will broaden!
It is said that euphoria or undue cheerfulness occurs in multiple sclerosis but I have not seen it or experienced it and I think depression is very much more common. Depression can occur at many stages of the disease. It seems to be common in the early stages after the diagnosis is made and the full implication gradually sinks in. I know personally it can be brought on transiently by seeing advertisements for wheelchairs at a time when the real meaning of multiple sclerosis is beginning to be understood. After a good period followed by worsening of symptoms, a bad attack of fatigue or a more serious relapse, patients are very likely to feel depression.
These feelings of depression can be severe and very distressing and they do in some people lead to suicide. Some doctors treat such periods of depression with anti-depressants as they would a normal depressive illness. Possibly this is the right treatment but perhaps it overlooks the real cause of the depression. I have been given anti-depressants but have found them of littie or no value. On the other hand explanation, reassurance, encouragement, and insistence on physical rest have relieved my depression very effectively. Now that I know that depression does occur I can treat it quickly and effectively myself by getting more physical rest. I do not think it is like an ordinary depressive illness because I find that as soon as I am flat and relaxed I have no difficulty at all in concentrating on a book or writing.
I think it is very important that one should learn to come to terms with these times of depression because they are very unnerving and distressing. They do seem to be a part of the illness of multiple sclerosis in a great number of people. If they can be accepted as an inevitable part of the illness and usually associated with fatigue they need not be felt as so overwhelming. If they are not accepted, I think they can cause very real feelings of guilt at being unable to control one’s feelings, cause irritability and lead to fears that one’s mind is being permanently affected. They come but they pass and they are something that have to be avoided as far as possible but when unavoidable accepted philosophically. So easy to write, so difficult to do!
Even minor disability has its mental effects. A dragging leg, a weak hand, a clumsy grasp and so on can be very much more obvious to the patient than to the onlooker. If you cannot accept these things as part of yourself and realise that they in no way change the essential you it is possible to become very sensitive about them and even aggressive. Let people help you; it is much more attractive to let somebody else pour out the coffee than upset the coffee pot. People are glad to help and may even feel hurt and rejected themselves if you refuse help. I have said this before but I think it is very important. Life will be much more harmonious for you, your family and your friends if you are able to face the things which you are not able to manage, stop trying to cover up your disability and accept the help that is waiting to be given.
I suppose we all know those magnificent lines of Wordsworth:
‘Getting and spending we lay waste our powers,
Little we see in nature that is ours,
We have given our hearts away, a sordid boon.’
Perhaps they only hit some of us with their full meaning when our powers are lessened and the trivialities of all the getting and spending in our lives is only too apparent. Cut down on some of the mad doings and rushing and acquiring and allow yourself the leisure to stand and stare. I am sure that only in this way can we hope to keep our minds at peace and to have the reserves of strength to deal with the really important things which for so many of us involve ourselves and our families.
Feeling ashamed of our failures and disabilities and weaknesses is a very negative emotion. When I am very tired I lose my balance easily whether I have had one sherry or not. I am appalled by the thought that people will think I am drunk. Is it so really important what ‘people’ think and is it really worth wasting my mental anxiety on casual observers? My friends know that it happens and know that I drink very little and will help me when I find it difficult to walk because I am giddy. They exhort me to get less tired and I do try and take notice. It is so important not to waste mental regret and embarrassment on incidents that are really so trivial.
It is particularly important that the mother of a family should come to terms with the many emotional problems involved in multiple sclerosis. It is a strange thing that although the father of the family is usually the bread-winner and often the chief physical provider it is the mother who holds the family together as an integrated and, one hopes, loving unit. If her health fails, and probably her mental health is more important than her physical health in this respect, the family can all too easily fall apart.
Children can become difficult at home and at school, adolescents may make unfortunate attachments to those of the opposite sex and become involved in drinking and petty delinquency. It seems so unfair to blame these mishaps on a sick mother but she is so often the pivot around which the children gravitate for their emotional and mental security. If she is too preoccupied with her own problems she is naturally quite unable to help her adolescent children with theirs, and all too easily the family unit can disintegrate.
How can she manage her own problems so that she still has the mental energy and the mental calm to cope with the hundreds of demands of a growing family? There are crises at examination times, upsets over love affairs, even fears of pregnancy, and it is not just that you feel guilty that it could be your fault—in one sense it is your fault, because you are no longer providing the calm and steadying security to which they have been accustomed. They know you are ill, they know you get irritable when you are burdened with problems, they know you get tired with just the minimum amount of work, they try to manage on their own and perhaps take on responsibilities which are beyond their years. They fail and when things which have been hidden come out into the open you realise with some justification that you really have failed them.
There is no question of fault about getting ill but you do have some responsibility for getting tired, irritable, depressed and exhausted. There is the question of responsibility; are you trying to allocate your limited energy in the most sensible way? You must rest during the day. You must stop a job before you are exhausted. If it is possible and certainly, if it is too tiring for you, you must give up a job outside the home. If you do this, remember to fill the vacuum with interests other than your family or you may become even more irritable from boredom than from exhaustion. Do not be afraid to ask for help as cheerfully as you can and accept it sincerely and graciously.
I find that it does help my peace of mind if I try to remember each day, however briefly, the things for which I have to be thankful. This may sound very trite but life can be hard at times and if I can only find ten seconds to remember something for which I am thankful I hope that it will become as much a part of the discipline of my living as resting and diets.
It is easy to write these words of good advice but very much more difficult to follow them. I know only too well how often I fail, get exhausted and feel unable to cope; but one must never give up hope. We only have one life on this earth and it often seems to me that it is going to take me rather longer than that to live sensibly with multiple sclerosis. One can only keep trying and perhaps on the way become a little more philosophical and a little more patient with oneself as much as with others, particularly those who are closest and dearest to us.