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Psychological symptoms and relationships under stress
Does multiple sclerosis (MS) cause psychological symptoms or personality change? These are questions that I am often asked - sometimes by a person who has MS and sometimes by a partner or family member. Behind questions like this there is usually fear, distress and a need to understand the truth. The idea that people with MS can become psychologically impaired by the disease is indeed frightening. Having had MS myself for twenty-seven years means that I have had to live, for a long time, with the possibility of so-called "cognitive" symptoms occurring. I am still scared that one day someone is going to come along and suggest that I should take early retirement on health grounds. I also wonder how my wife and family would cope if I should become even more grumpy and self-centered than I already am!
PSYCHOLOGICAL SYMPTOMS
There is no simple answer to the question of whether MS causes personality change or psychological symptoms. They can occur in people who have MS, but they are by no means inevitable, and many people who have the disease will live long lives and never experience them at all.
Cognitive or psychological symptoms are usually caused by patches of MS damage in those parts of the brain associated with thinking processes and the emotions. It is important to realize that they are different from the more usual emotional problems that are felt when we are reacting to the limitations imposed upon us by MS. The grief, anger and depression that occur when people are coming to terms with MS is understandable and to be expected. These natural feelings and responses to loss are not caused by the disease directly.
LOSS OF MEMORY
"She can't remember things like she used to; she even forgot my sister's name the other day, and I can never trust her with a message".
About one in three people with MS have some degree of memory loss, the most common of the cognitive symptoms associated with this disease. There are often no other thinking problems and the person can help themselves a great deal by keeping a personal notebook and using this as a memory aid. I keep a list of things to remember each day, either in my pocket or on my desk. I can then cross things off when they are done and write new ones in as they arise. In this way I rarely forget an appointment or an item of shopping that I have been asked to bring home.
LOSS OF INTEREST
"He is not interested in going out and does not like change. He just watches TV and won 't meet anyone new. It is a strain for all the family ".
Less common than memory difficulties are problems in making decisions, planning ahead and organizing things. Sometimes people with MS can find it difficult to start to do new things or work out complicated problems. In a small proportion of people severely affected by MS, cognitive effects can be more prominent and may lead to distress or frustration in personal relationships.
However, it is important to recognize that not wanting to meet people or to go out, and general loss of interest may be due to depression or to feelings of shame associated with embarrassing symptoms like incontinence or tremors.
LOSS OF CONTROL
I have sometimes heard the following sort of statements made by people who have MS or by their relatives:
"I don't seem to be able to control my feelings... I cry very easily and sometimes I laugh at the wrong times. It is very embarrassing... I can't go out anywhere... I can't put up with it anymore".
"She is so irritable and doesn't understand how tired I get; I haven't had a holiday for three years and goodness knows when I last had a good night's sleep".
"He has become selfish and difficult - not the same person that I married at all. He loses his temper very easily, and can 't stand the kids making any noise. But when the nurse comes in he is all smiles and chat - - a Jekyll and Hyde character if ever there was one!"
Problems in relationships, already strained by the frustration of dependency are made worse when a person who has MS loses control over the expression of their inner thoughts and feelings. They may say cruel or hurtful things to those nearest to them and be labeled by others as "self-centered", "un-caring" or as having a changed personality.
OVER-REACTION
When two people are "trapped" in a relationship by MS, the resulting anger can erupt in the form of physical violence. We have all heard of abuse of children and the elderly, when people are under extreme emotional stress. How many consider the stress that can occur in families living with MS?
A partner can become so frustrated that he or she may shake or hit a dependent disabled person. Relatives can find it especially difficult to accept help from others and may not be able to admit even to themselves that they are finding it hard to cope. They may feel that the caring role is theirs alone and can become resentful or guilty if they accept help, or if it is implied that they are not coping on their own. People like this can appear to others as being overprotective. Certainly it is in these very close, exclusive relationships that violent over-reaction is most likely to occur -- often completely out of the blue when tensions have built up to a critical level and the last straw has broken the camel's back.
Someone with MS can also lose control and may lash out, perhaps with a cane, at children and other family members. The sometimes heard comment "MS seems to bring out the black side of people's personalities" is understandable if a person with MS is seen as being "negative" and "selfish" rather than as having a genuine medical problem.
After an aggressive episode has taken place within a family, those concerned can feel shocked and guilty at their own reactions. They may become depressed, harbouring self-destructive or even suicidal thoughts. There are serious concerns on both sides about how things will work out in the future, including doubts about how they will cope and fears that they might be rejected by the other person and criticized by relatives. Complicated "love-hate" feelings can include the secret hope of being free from the other person altogether -- with even more guilt, anxiety and confusion!
HELPING
It can be difficult to know how best to help when violence has broken out in close family relationships. This is because there is a natural tendency to cover up or deny what has happened, even to oneself. Often the family closes ranks in the hope of hiding the situation from others who may not understand, who might blame or condemn instead. If enough trust can be built up with someone outside of the family, counseling can usefully take place either individually or with family members together. Being listened to and understood rather than being judged is the basis of counseling. Counseling can result in a lowering of emotional pressure, the sharing of sadness, fear and anger, and the discovery of new and different ways of living together which are more successful and fulfilling than before.
Of equal importance is the recognition by family members, professionals and MS Society volunteers and staff, that people caught in impossibly stressful relationships need regular breaks from each other, together with time to be with different people, be in different places and to do different things. Respite care programs, adapted housing and mobility aids in conjunction with well-staffed attendant care and night sitting programs, can free people from unhappy "hostile-dependent" relationships. This will enhance the quality of life for the whole family.
CONCLUSION
There has been some confusion in the past about whether or not psychological symptoms exist in MS and this has led to both people with MS and their relatives feeling guilty, misunderstood and isolated. Once we realize that MS can sometimes lead to difficulties in memory, concentration, self-control and emotional expression, people with MS and their relatives alike will be in a better position to cope with their own reactions and to deal with the way that others treat them.
It is often difficult to know how much emotional symptoms are directly due to MS or are a response to living with disability generally. Depression, for example, may be the result of a mixture of causes and in some circumstances psychiatric treatments may be helpful in removing the symptoms.
It must also be stressed that many psychological symptoms, like memory loss for instance, occur commonly in the general population, and are not necessarily the consequence of having MS.
All psychological symptoms, whether cognitive or emotional, direct or reactive, need to be considered by physicians and other health care professionals at an early stage. They can help people with MS and their relatives to understand the disease better and to live more fulfilled and dignified lives. The Multiple Sclerosis Society of Canada through its divisions and chapters may be able to help with the provision of information, self help programs, support groups and individual or family support counseling. Much can be done by health care professionals, MS Society volunteers, staff and MS Clinics to assist persons with MS and their families in dealing with the psychological and emotional aspects of MS.
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