Multiple Sclerosis publications
From: "Open Door" MS Trust Newsletter - Spring 2002
MS: Issues around the diagnosis
Alexander Burnfield MB BS DPM FRCPsych
Consultant in Child and Adolescent Psychiatry, Hampshire
“The only time my doctor looks at me is when he wants me to leave.”
People with multiple sclerosis (PwMS) like to compare notes about their doctors and discuss consultations and treatment. Statements like the one above are sadly not uncommon - but patients also praise their doctors when they take the time to listen and allow them to ask questions or express frustrations. People are now better educated about health and illness and many respect the physician who admits not knowing all the answers or who involves patients themselves in an honest discussion of problems associated with the diagnosis or management. People with MS often use the Internet to find up-to-date research about MS before a busy and information over-loaded GP knows about it. A good doctor will accept the information given to him or her by the patient and can allow a genuine partnership to develop.
MS can be difficult to diagnose as it depends on a pattern of symptoms and signs occurring over a period of time. There are still no absolutely reliable diagnostic tests for MS and the disease is often suspected before subsequent events or investigations can confirm it. Yet an early diagnosis is essential to exclude other treatable conditions and for research purposes. Current brain imaging technology enables a diagnosis of MS to be made much more quickly than in the past. This makes the business of “telling the patient” more demanding for the doctor who is less easily able to delay informing the patient.
What physicians say about diagnosis and treatment and how they listen to their patients is critical in determining their patients' future psychological adaptations, and whether or not mental illness will occur at a later stage. PwMS and their families are faced with a frightening experience to which they must adjust before they can plan for the future. Honesty from doctors and other healthcare professionals will enhance the professional/patient relationship and lead to greater trust.
PwMS hold strong views about how they should be given the diagnosis and many claim that they were not told the truth. Some have discovered their diagnosis by accident, while others have had to resort to subterfuge, such as steaming open doctors' letters, or reading hospital notes upside down. Occasionally a patient's partner has been told the diagnosis first which inevitably places a great strain on family relationships.
In these high-tech days physicians may feel better trained to investigate and cure rather than care for their patients. But strictly clinical skills are only part of the work involved - it is also essential that the physician understand the patients' fears, expectations, relationships and beliefs. Once diagnosed as having MS people must live with a disease which is both humiliating and depressing. They have to cope with loss of health and security as well as changed roles in the family and at work so devastating to self-respect.
Many PwMS feel angry and may look for someone to blame. Often eager to find an explanation and cure, they may turn to “quack” remedies or diets. In both of these circumstances a patient's physician is a natural scapegoat and may be rejected or treated unfairly. At this point some doctors take the patient's naturally grieving behaviour personally, and may feel less able to cope with the relationship in a positive way. One outcome is that the physician will try to avoid the patient, or even to pass him or her on inappropriately to some other health or social care worker - so increasing a patient's feelings of being alone and abandoned.
As well as coming to terms with loss the person with MS has to cope with the vague initial symptoms of the disease, which are subjective but very real. These can be difficult to describe without appearing to be “neurotic” or “a hypochondriac”. Physicians sometimes use such labels, but they serve only to undermine the trust and goodwill in the relationship between the patient and doctor. Visual or sensory symptoms, and in particular memory and cognitive dysfunction, are hard for patients and close relatives to understand.
Because of the difficulties involved in communicating subjective symptoms, the PwMS may deny or hide them - others may exaggerate the symptoms in an emotional or manipulative way so perpetuating the suspicion of some physicians that the patient is psychologically rather than physically ill. These responses can lead to further breakdowns in communication and may precipitate a depressive or paranoid response complicating the clinical picture even more.
For the physician/patient relationship to work well there must be mutual respect, honesty and openness. The person with MS will then be able to benefit maximally from the doctor's knowledge and skill and the doctor will be enabled to respond better to his or her patient's needs and expectations. A suspected or definite diagnosis of MS should always be shared with a patient unless there is an exceptionally good reason to withhold it.
People with MS, together with their partners and family members, rightly expect to receive a full and clear explanation about the disease, including possible outcomes and treatment options. They should be referred early to supporting health and social care professionals such as specialist MS Nurses who have an ever more important role in working directly with PwMS at all stages of disability. The availability of new and effective treatments for people with MS means that much more can now be done to help and give hope to those newly diagnosed with MS. Many of us have become experts in our own disease and expect to be treated as partners in our MS management programmes and to be listened to with respect and understanding.
Dr Alexander (Sandy) Burnfield has lived with MS for over 30 years, and is the author of Multiple Sclerosis: A Personal Exploration published by Souvenir Press, London, ISBN 0285650181 - now available in a 2001 edition
Multiple Sclerosis: An Aid To Maturity?
by Dr Alexander Burnfield MBBS DPM FRCPsych
Multiple sclerosis (MS) as an aid to maturity? To many of you this title will sound strange, and even insensitive, or worse - perhaps insulting! How can a disease like Multiple Sclerosis, the cause of so much misery, humiliation and despair, how can this be associated with maturity? I can even imagine some thinking, 'In a state of MS euphoria he has finally flipped! Perhaps he is unable to face up to the true facts about MS'. I don't blame you, it does sound pretty crazy and I have some explaining to do.
I am going to begin 22 years ago with the depression, loneliness, fear and anger that I experienced on finding out that I had this disease. The discovery came as a shock. As a 20-year-old medical student I had decided that the blurred vision in my left eye was only an eye problem. So you can imagine how surprised I was to be referred to a top neurologist at the London Hospital where I was training. After a full examination this specialist avoided eye contact as he made non-committal statements about the cause of my symptoms. Growing suspicious and confused, I visited the medical library and set about finding out all I could about optic neuritis from the textbooks, but these were not reassuring: they all agreed that optic neuritis was frequently the first symptom of Multiple Sclerosis and that within about 10-20 years I could find myself paralysed, blind, incontinent, unable to speak properly and even demented. Death would probably occur as a result of chest or urinary infections, or from septicaemia associated with bed sores. I was numbed with shock and felt lonely and frightened. I can remember sitting in the library with sweat pouring off my face and with my pulse thumping rapidly inside me.
A few months later I was left with only slight visual loss, but the next few years were difficult emotionally. Other symptoms appeared in keeping with a diagnosis of MS, but I was scared to see another doctor. I hid my symptoms and feelings from others and felt isolated and very depressed. MS was finally confirmed when I lost the use of my right arm while working in a Casualty Department not long after qualifying as a doctor. I have had other relapses since then, but have come to realise that the textbooks were pessimistic. Like me, very many people with MS are in fact not severely affected and many will have a normal life expectancy.
Sometimes the textbook picture is accurate. As a junior doctor I occasionally met people who were suffering from MS to an advanced degree. In one of my early jobs I worked on the neurological wards of The London Hospital, where I remember meeting a man who had all the classic textbook symptoms. Not only did he have the symptoms and signs of severe Multiple Sclerosis, but his wife had left him, no members of his family visited him in hospital, and he no longer had a job. He was bedridden and I found it very difficult to communicate with him. However, I used to spend time with this man, listen to his difficult speech and feel sorry for him. But I was really feeling sorry for myself and trying to make sense out of what MS could mean to me. I could not make any sense out of MS for anyone and I came to the conclusion that there was no meaning. It seemed to me that all life was meaningless. It was clear that life was a whole sequence of sad events, losses and suffering. In hospital practice I was faced with children with leukaemia, young husbands dying as the result of road accidents, and other tragedies.
Meaningless events are a regular occurrence. When I was writing the first draft of this paper an incident happened near where I live. A young woman, on her first parachute jump, landed on top of a hovering helicopter and was killed. She was jumping for charity, to raise money for cancer research. All these things seem meaningless and indeed I now realise that in themselves they are meaningless.
In my own case, when I first developed Multiple Sclerosis, someone was able to listen to me when I was depressed and this helped me to understand that my grief was a natural thing. Not only did I have a right, but it was necessary for me to be frightened, angry, confused and sad about my predicament. She helped me to realise that I would have been abnormal not to have experienced those things; and this counselling certainly helped. But where did I go from there.
Once I discovered that it was OK to be angry and sad, I had to make decisions about my future. I began to accept Multiple Sclerosis as actually being part of me for the first time. But where did all this lead? I could still find no point to it all. My experience so far was that MS meant not just humiliation, stigma and loss of health, but also loss of income, loss of status, loss of role in the family, loss of work and loss of the ability to be part of society. I asked myself, is it possible for me to turn the tables on my MS, to benefit from it, to use it rather than to let it use me? Like the alchemists of medieval times, I had to try and turn base metal into gold, and for this I have to find the philosopher's stone. I was faced with the eternal problem of suffering in all its aspects, not just with Multiple Sclerosis.
First I looked to nature and observed that, in the words of Tennyson, it was 'red in tooth and claw'. there was plenty of suffering in nature and the only meaning seemed to come from the constant thrust of life to continue in whatever form possible. Suffering is a means to this end; death produces life. Rotting flesh produces maggots that become flies; flowers die and become fruit; fruit rots and leaves seeds to form more flowers and so more seeds.
I observed that decay and maturation were synonymous. Take a maturing fruit, like a plum. The flower becomes the immature, bitter product and then the mature, fleshy red fruit; this is eaten and so destroyed.
However, the very destruction reveals the stone. The mature plum is both the end result of a developing process and the means to an end, the end being to provide more plums! But how did this apply to people? There are of course basic similarities to the propagation of more people through the physically mature body, but all this self-propagation did not seem to make a lot of sense as an end in itself.
I turned to philosophy. Was there a maturity of the inner self to be found through the life, experience and decay of the outer self? Life for all of us can be seen as a constant series of cycles of loss, associated with changes and, hopefully, with gains as well. There is the loss of childhood, the loss of innocence, the loss of youth, the loss of our parents through death, the loss of our children through growing up and leaving home, the loss of our freedom and power through old age and through illness, and eventually this is the loss of life itself.
Clearly a process of change and development, but what was its significance for those of us going through it, faced with unbearable loss, humiliating illness, physical distress and suffering? I noticed that people differed in how they coped with MS, and with other sufferings and losses. Many people with MS gave up, became bitter, were unable to cope. Relatives also sometimes became exhausted, depressed, unable to cope any more. Marriages often broke up. But there were people, admittedly a minority, who somehow did seem to cope. They managed to adapt and often found new and unexpected meaning in their lives. These people found doors to open that they had not noticed were there before. I remembered William Blake's words:
The Tree which moveth some to tears of joy is in the eyes of others only a green thing which standeth in the way... as a man is, so he sees.
I asked myself: What makes one person see things one way and another a different way? Can we change the way we see things? Can the man who sees the tree as in the way and needing to be cut down come to se the tree as something with another meaning, a positive meaning, to give shade, to provide beauty? Can people with MS and their relatives learn to see MS in a different context?
MS is certainly a destroyer: physically, psychologically and socially. Having MS is unfair, meaningless. It is not surprising that many people who have this disease, and their relatives, feel despair, suicidal and bitter. But is MS just a destroyer? Can anything be salvaged? Is there any possibility of gaining from the experience, not just surprisingly, is yes. The possibility does exist.
The Jewish psychiatrist, Dr Victor Frankl, was an inmate in a wartime concentration camp. Miraculously, he managed to survive the experience and to write about what happened to him and what he was happening to others as well. They were all faced with suffering of an overwhelming nature, with physical, psychological and social losses. He was stripped of all his clothes and a research thesis that he was writing was taken from him. His young and newly-married wife was killed. His home was taken from him and he had nothing but life itself for some years in the camp. Victor Frankl observed others as well as himself. As a psychiatrist he hoped one day to put his experiences to some use, to create some meaning out of what had happened to him, however unrealistic this seemed at the time: he only had a slim chance of survival. His experience was undoubtedly unfair, meaningless, humiliating and totally destructive.
This experience was also unfair and meaningless to those around him, to the other prisoners, most of whom died. He discovered the prisoners and guards were not clearly divided into those two groups, because from each group there were people who tried to maintain their inner life and personal integrity, despite what was being done to them. It was more difficult for the prisoners. Many of them gave in, withdrew, went along with the system, exploited others, became bitter, gave up, became ill or died, but he noticed that a few were able to keep something inside them from being polluted by what was happening to them. He decided that something inside himself could not be destroyed or taken away by his experience. This was his ability to respond, to make decisions about what was happening to him, even if he could not act upon them, to have an opinion, to agree or to disagree, to love to forgive, to act upon them, to have an opinion, to agree or to disagree, to love to forgive, to accept or to reject. He managed to hold on to this inner truth whatever happened to his body and to those around him. Ultimately he did survive the concentration camp experience and went on to become Professor of Phychiatry in Vienna, where he was eventually able to put his experiences to some creative use in the field of psychotherapy.
What has this got to do with MS? A lot. The same principles do apply. There is no meaning or sense in the experience of MS in itself, for those of us who have it, or for our relatives. There are no answers, no shortcuts. As Dante wrote in his 'Inferno'. the only exit from hell is at its very centre. Like others who suffer, whether through prison, illness, cancer, bereavement, disaster or famine, there is no doubt that life is unfair. So we must come to realise that we cannot expect it to be different for us personally. Why should we be different from other people? Why shouldn't life be unfair and meaningless? When we have accepted this first and difficult fact, then we can be realistic about our suffering or our experience and not try to escape from it in a futile manner, through becoming either a cynic or a fanatic. We will be able to say, 'Why not me?', rather than cry despairingly 'Why me?
Once we can say this we can then go on to the next stage: to create some meaning out of our experience by taking responsibility for our inner life and choices. To do this we need to understand that we all suffer in some way, whether we have MS or not. We will all die. Suffering is part of the process of life and, as such, there can be no growth or maturity without it. We must, therefore, be able to use our suffering, in whatever form it comes to us, to understand ourselves better, to see that we are not just separate individual, but also part of one another. The suffering we experience and want to get rid of is universal and, paradoxically, one of the foundations of inner maturity.
My Grandmother, a Victorian, used to say, that 'these things are sent to try us'. This soundS rather glib but it is essentially true. Suffering, and MS, can be food for our inner maturity, although most of us no longer seem able to see suffering in this way. Instead we regard it as abnormal or unnatural, so failing to grow beyond it.
Like Victor Frankl, we can make choices about how we respond, even when we are badly disabled, even if only about how much we agree or disagree with something. We can have an opinion, hold views and take responsibility for our thoughts, decisions and actions. To do this is to become mature. 'Letting go' need not mean failure but strength. Lao Tzu said:
Yield and overcome! The reed bends in the wind and springs back because it is flexible. It survives. But the rigid and heavy oak with be destroyed.
Maturity does not mean self-sufficient independence. This is an arrogant and unrealistic way of living life, ultimately bound to fail. We all become weaker, whether we have MS or not. Instead, maturity means being interdependent: to choose to give what we can give, but also to receive what others can give us when we are dependent. Maturity also means being able to love in the full sense. Mature love is not just about giving and doing things for others, but perhaps more importantly it is being able to receive what others have to offer: this is not easy, since so often we want to be in control and make decisions, not just for ourselves but for others too. But this is not really love, rather it is possession and domination of others based on fear and insecurity.
I know a person with MS who still manages to teach on a part-time basis. She works in a school for teenage children with special emotional difficulties. She told me that because she is helpless in her wheelchair the situation has enabled her to give children an opportunity to give something to her, to do things for her and to help her; this has been a great help to those young people who have not previously felt needed or able to contribute. She is able to see that her own helplessness offers others an opportunity to give, and to mature with her.
Another friend of mine with MS is from Spain. One evening, not so long ago, while we were drinking together in my local pub, he told me about his experience with MS and how he had, in a strange way, gained from it. When we came home I wrote down the basis of what he had to say and this is it:
The more my eyesight gets worse, the clearer my inner vision seems to become. Despite the uncertainly of my life with MS, I have never felt so sure inside. My body is like a car which does not work properly but I somehow know that the driver inside is okay. When I think of this, my MS seems less important. I now realise that I can express myself through my body in new and different ways, like an experienced driver can express himself through an old car or a beat-up truck.
We must not expect to find answers to 'Why me?' because there are none, but we can let go of our MS by answering the questions that life is asking us, though our experience, by responding and making new choices, by adapting to our new situation. In this way we shall be able to create meaning and truth inwardly while our other selves, our bodies and brains, go through the stages of maturation, like the ripening plum, one day to rot and to decay. the English poet, John Masefield, wrote these words in 1914:
Man with his burning soul
Has but an hour of breath
To build a ship of truth
In which his soul may sail -
Sail on the sea of death
For death takes toll
Of beauty, courage, youth,
Of all but truth ...
This paper was presented at the Persons with MS International Workshop, IFMSS Conference, Washington DC on 10th September 1987.
Published in the Journal of Clinical Rehabilitation 1989; 3: 75-78
THE PSYCHOSOCIAL IMPACT OF MS
Dr Alexander Burnfield, MBBS DPM FRCPsych
Adapted from The Psychosocial Impact of MS published in the International MS Journal, 1995, 2,1,33
Behind such questions as "Does multiple sclerosis (MS) cause mental symptoms?" and "Is personality change common?", there is often fear and distress along with a desire for reassurance. The idea that people who have MS might become mentally, as well as physically, impaired is a particularly frightening one. Our "concept of self" is more often associated with our minds than our bodies. Loss of mobility is disabling, but loss of mental faculties strikes at the very core of our self-esteem.
The psychosocial impact of MS is the consequence of two major factors interacting together, and not easily differentiated in practice:
how well a person adjusts to the diagnosis, disability and implications of MS, and the extent of psychological impairment caused by the disease process.
Many people with MS are distressed before receiving their diagnosis, and conflict between potential MS patients and their physicians can arise during the pre-diagnosis period. In one study it was noted that many patients in this situation began to take an active role in establishing their own diagnosis, and conflicts thus extended to relationships with family and friends. Naming the disease led to a reduction in stress. The investigators in the study concluded that physicians should be urged to consider the emotional factors when deciding whether or not to inform patients of a suspected diagnosis of MS. With the advent of the magnetic resonance (MR) scan, it is now possible to diagnose MS far quicker than it was a few years ago. The same principles, however, remain valid. Maguire's advice on the management of patients with breast cancer also applies in MS: "It is what treating physicians say about diagnosis and treatment that is critical in determining patients' psychological adaptations to their condition. Physicians must combine learning and technical expertise with counselling skills if they wish to be fully competent. A proper balance between medical acumen and bedside manner is needed.
Once the diagnosis of MS is made, the process of adjustment can begin. The patient will need to mourn lost health and get used to a new identity. At first there may be feelings of shock and disbelief, of anger or denial. At a later stage, depending on how the situation is managed, the initial need to deny is replaced by sadness and a gradual acceptance of a new reality. It is important to recognise that this bereavement process is natural and cannot be rushed.
People need the security of denial until they are able to replace a set of old beliefs with new ones; this process is delayed by confrontation at the wrong time which can lead to increased fear with a strengthening of anger and denial. Counselling can help patients to work through painful and confused feelings, to accept new limitations and find positive solutions.
Many MS symptoms are invisible to other people and patients can be particularly distressed if it is suggested that their experience is "all in the mind" or that they are "exaggerating to obtain attention". The most common misunderstandings relate to MS fatigue which can fluctuate like other subjective symptoms over very short periods of time. Memory loss, pain and urinary symptoms, like fatigue, are often a major source of stress for MS patients who are all too often labelled as "neurotic" or "depressed" by professionals or family.
People adjust, or fail to adjust, in many different ways; this is not related to the severity of physical disability, but mental impairment is a significant factor. Important influences are personality, family support and professional management of the disease.
PARTNERS AND CHILDREN
Multiple Sclerosis can cause considerable unhappiness within families who also have to adapt to the disease and it's consequences. Partners can find it hard to cope, and are, in some ways, under more stress because they may consider they have the choice to stay or go. If the basic relationship is poor, MS may be made a scapegoat for all emotional, relationship or sexual problems. Separation or divorce can result, and is more likely when the person who has MS is female.
Multiple Sclerosis often leads to sexual dysfunction in both sexes, and this needs to be acknowledged when it is of concern to an individual or couple. Specialist help should then be made available. Sexual problems are inevitably the result of complex interplay between physical, psychological and cultural factors. Incontinence can complicate the situation where it exists, and may also be associated with self-revulsion, depression and social isolation.
Anger, whether expressed directly or indirectly, is common in MS relationships. Patients may find it hard to express angry feelings, especially if they are dependent and fear rejection, or if the person without MS feels guilty. When feelings of resentment or guilt are hidden, relationships can become dishonest and manipulative behaviour or "games playing" can occur.
An insecure person with MS can adopt an unnecessarily dependent role thereby creating resentment, or a caring relative might compensate for underlying wishes to reject their caring role by aggressive over-protection.
Children may become disruptive or attention-seeking if their needs are ignored; MS should be explained to them at a level that is appropriate to their age. They may be particularly distressed if they feel excluded, or if they believe that there is a frightening family secret.
Some children learn to feel guilty either because they believe they are the cause of the patient's MS or because they feel that they are an extra and unwanted burden. This can lead to depression or to behaviour problems at home or at school. Some children try to compensate by becoming very involved in helping a parent with MS. This can work out well, and many such children develop into mature and understanding adults. Some, however, grow up too fast and may miss out on being cared for as a child, becoming over-responsible "little adults", and finding relationships difficult in adult life. When family relationship problems do not respond to counselling and become persistent, referral should be made to a child and family psychiatric service.
For many families, psychological impairment related directly to the MS disease process is the cause of much anguish and misunderstanding. In recent years, research findings clearly indicate that impaired cognition is not uncommon in MS.
McIntosh-Michaelis et al. Used sensitive psychometric tests to compare an MS population with rheumatoid arthritis patients who had an equivalent level of physical disability. Cognitive impairment was found in 46% of those with MS, with memory impairment in 34% and failure on tests of frontal lobe function in 33%. The study suggests that counselling and rehabilitation programmes for people with MS should take account of cognitive deficits that may be present.
This author's experience has been that, for people with MS, family members and professionals often fail to take account of cognitive impairment when faced with family and relationship difficulties. The following statements illustrate the problem:
"She is not interested in going out and dislikes change. She just watches TV and won't meet anyone new". Community Nursing Sister.
"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 think my wife has had enough". A man with MS.
"She is so irritable and doesn't understand how tired I get - I haven't had a break for 3 years and I can't remember how long it's been since I had a full night's sleep". Husband of a woman with MS.
"He has become selfish and bloody-minded - not the same person I married. He loses his temper very quickly and struck our son with his cane the other day. But when the nurse comes in, he is all smiles and chat - a Jekyll and Hyde character if ever there was one!" Wife of a man with MS.
The problems in relationships already strained by the mutual frustration of dependence are exacerbated when a person with MS, perhaps cognitively impaired, behaves in a way that is perceived by others as thoughtless, uncaring or self-centred.
Often those caring for such a person feel "trapped" and it is perhaps not surprising that emotional and physical abuse are sometimes a feature of relationships involving a person who has MS.
Guidelines for personnel faced with the practical issues of managing abuse in MS families make the point that: "Disabled people are sometimes victims of abuse or they can be perpetrators of abuse of their carers or children. When a person is subject to behaviour from others which denies the person's rights of privacy, dignity and choice, when they are subject to sexual or physical attacks, when their money is misused by someone else - we consider them to be abused.
People working with severely stressed MS families need to adopt a sensitive but firm approach. It is essential that professionals and voluntary carers have a sound knowledge of the disease, and that they are well trained, fully supported and properly supervised.
Of equal importance is the recognition that people trapped in very stressful relationships need regular breaks from each other. Respite care programmes, adapted housing and aids to mobility, together with well-staffed care programmes and night-sitting schemes, can free both carer and cared-for from the tyrannical demands of MS.
The fact that MS can result in psychological symptoms, and that the consequent distress can be overwhelming for family members, is still insufficiently acknowledged. People with MS, their partners and children sometimes feel guilty, misunderstood, isolated and unsupported.
Physicians have a responsibility to ensure that all members of MS families understand that the disease itself can sometimes lead to difficulties with concentration, memory, emotional expression and self-control. It is often hard to tell which emotional or behavioural symptoms are directly caused by MS and which are a response to loss, or to difficulties in coming to terms with the disease and its implications. Symptoms of depression, for instance, can be the result of a variety of physical, psychological and social factors. Treatment must take account of all these aspects, and include psychological assessment, cognitive rehabilitation, counselling and family therapy.
MS - Some Communication Issues
A doctor came to see me because she had been diagnosed as having MS. She had told her Consultant Neurologist that she wanted to meet someone else with the disease; he had laughed and replied "Don't be silly! The next thing you'll be doing is writing to the MS Society for leaflets!"
Another woman told a group of people with MS, who were complaining about doctors, that she had experienced no problems with her doctor. In fact the opposite was the case - her doctor could not have been more helpful. Why? The doctor had invited her to a special appointment, read out the letter from the Neurologist diagnosing MS, and then had said "I don't know much about MS, but we will find out together." And that was exactly what had happened - the person with MS working in partnership with the doctor, together sharing information, skills and responsibilities.
The first person's need for information and sharing was not heard. In the second case the doctor adopted what is called a "one down position", helpfully returning power and respect to her patient. This paper is about understanding, and putting into action effective and "consumer friendly" ways of communicating with, and within, MS families. The issues raised are relevant to all Health and Social Care professionals and MS Society workers, not just the medical profession.
The physical effects of MS may be easier to deal with than the more emotionally demanding psychosocial ones. Consequently family members and professionals sometimes prefer to focus on the physical and avoid addressing the emotional needs of people with MS and their relatives. Common ways of distancing from emotionally difficult aspects of MS include:
Avoidance - ignoring psychological distress.
Selective attention - focusing on something easier to cope with.
False reassurance - " Don't worry. You just have a touch of neuritis. You will soon be back to normal".
Dissimulating - using impressive sounding jargon, but leaving the person with MS feeling confused, misled or unnecessarily alarmed.
People avoid psychological and relationship issues for many reasons:
- To protect themselves from painful feelings such as sadness, anger, guilt and helplessness.
- To cover up lack of knowledge or of ability.
- Insufficient training, experience or professional supervision.
- They are uncertain how to respond.
- They believe they do not have time, and that there are "more important" things to do.
- They choose to believe that it is someone else's responsibility.
- Many other convenient reasons!
It is easy to be critical, but I do not believe that people want to behave in an inattentive or uncaring way. Most people are doing what they can within their own limits, and really do not know a better way to behave in the particular circumstances.
COMMUNICATION: SENDING AND RECEIVING MESSAGES
Communication is basically the process of listening, understanding and showing that we have understood by responding helpfully. The last mentioned - showing that we have understood by behaving helpfully - needs further elaboration, since I believe that this is the key to better communication techniques. Before giving some practical examples, it is useful to grasp three underlying principles:
1. All behaviour is communication.
2. All communication is behaviour.
3. Behaviour (Communication) will continue until it receives an appropriate response.
In other words we send each other messages through the way we behave - verbally or non-verbally. If we do not get a "message received and understood" signal
then we continue to send our message, perhaps louder than before, or in a more demanding or attention seeking way.
SOME USEFUL TECHNIQUES
Talking with someone who has MS
Communication is a two way process, so make sure that you listen as well as talk. Allow plenty of time, encourage questions and smile sometimes. Look at the other person from time to time, rather than at your watch or your notes! This seems very obvious, but I often hear that these simple ways of respecting the other person have not happened. ("The only time my doctor looks at me is when it's time for me to go.")
Anxiety and fear
It is natural to want to reassure someone who is very worried, and you should do so if there really is no genuine cause for their fear. However it is not helpful to try to reassure a person if they have good cause to be anxious - they will soon see through this dishonesty and cease to trust you; they may also stop trusting others and refuse to accept more helpful solutions. The honest and most helpful response to a genuinely worrying situation is to hear the communication of fear and acknowledge it. "You are right to be worried. It must be very frightening to find that you have MS. I expect you have heard scary things about this disease." This response is appropriate, and shows that you have genuinely received the message they wanted you to get. Paradoxically, the person with MS will usually become less anxious and will know that you can be trusted.
Depression and Anger
The same technique should be applied. Acknowledge and value the message communicated and do not evade it. If someone is crying tell him or her that is good and right. Do not anxiously hand them a tissue, but make sure tissues are near so that they can help themselves. Once they know you accept their depression they can stop crying - the message has been heard.
If a person is angry they often feel that they have not been heard or responded to properly. Tell them they are right to be angry, and that they have good reasons to feel that way. They will usually feel more able to relax, to trust and to adopt a calmer, more reasonable, listening stance.
Relatives and professionals are often worried when a person with MS does not accept that they have the disease, or some aspect of it. A person's need to deny should be respected. It is serving a purpose for them, and they are telling people not to push them too far, too quickly. More adaptive beliefs and behaviour will eventually replace denial when the person feels safe enough. Confrontation at the wrong time may either increase fear or perpetuate denial, or precipitate a severe, sometimes suicidal, depression.
Sometimes a person will try to make you take responsibility for their feelings or behaviour. They may learn that they can do this through flattery, threats, promises, self-deprecation. false logic or other guilt inducing techniques. This behaviour is unhelpful and often leads to anger, resentment or rejection. It is essential to respond to these indirect and emotionally loaded messages with firmness and consistent limits, and to say "No" without guilt or resentment. These assertive techniques depend upon firstly acknowledging the other person's feelings, rights and responsibilities - and then firmly stating your own rights and wishes, consistently and repeatedly, until the message gets through!
DR ALEXANDER BURNFIELD MBBS DPM FRCPsych
Terstan Longstock Stockbridge SO20 6DW, UK
MS and the blues
It's a dull ache that makes you feel anxious, irritable and hopeless. You can't even see the point of getting out of bed. But depression needn't destroy the lives of people with MS, says Dr Sandy Burnfield
The word depression is used to describe such a wide range of moods that it is often misunderstood - many people talk about being depressed when really they mean sad or disappointed. If you've experienced a loss, rejection or bad news, then feeling low or devastated is absolutely natural and appropriate. Anyone newly diagnosed with MS, for instance, is likely to feel shock, anger and sadness as they mourn their lost health. But grief is not an illness and these feelings do not mean that the person is, or will necessarily become, clinically depressed.
Nonetheless, depression is a common illness - around 5 per cent of the population will be affected by it at any one time. The bad news is that people with MS, like those with any other disabling condition are more likely to get it.
Behind the smile
Another piece of bad news is that depression is often missed or neglected by GPs: this is partly because many patients tend to hide their depression under a smiling exterior and partly because many doctors prefer to focus on physical symptoms, which they may find easier to deal with than psychological distress.
I've noticed that the medical profession also tends to like to reduce everything to one pathology - so if a patient has MS they often want to explain away every symptom that person has only in terms of their MS.
The good news, however, is that if depression is spotted it can be treated with great success. So how do you spot it?
Of course, most people feel some of the symptoms of depression from time to time (see panel over-leaf) but, as a general guide, I would say that if you have felt some of them for more than two weeks -and particularly if you feel unable to continue with everyday life -then there's a strong chance you are suffering from clinical depression and should seek help from your GP.
No one has yet produced a complete explanation of what causes depression. Some experts suggest the cause is physical - a biochemical imbalance in the brain - while others believe it S an emotional response to the stresses and strains of life. I believe there is an interplay between the two.
THE SYMPTOMS OF DEPRESSION
loss of energy (where you find every task a huge effort)
sleep disturbance (which can mean sleeping too much, too little, or at the wrong time)
eating too much or too little
going off sex
headaches, backache, nausea, a permanently heavy feeling in your chest 4
sadness (you keep wanting to cry)
manic excitement, agitation or restlessness
panic and anxiety
mood swings from one extreme to another
a deep sense of hopelessness and perhaps suicidal thoughts
feeling worthless, unwanted
being over self-critical, dwelling on past mistakes feeling guiltily responsible for other people's misery
feeling unable to cope and not in control of your life feeling unable to make decisions because everything seems pointless and you cant-work up enthusiasm for the things you'd normally enjoy
withdrawing into yourself so you spend more and more time alone
not being able to express yourself properly neglecting your appearance
neglecting others (eg spouse or children)
harming yourself or others (physically or emotionally)
Keeping it in the family
We know, for instance, that people whose parents suffer from depression are more likely to suffer themselves, which suggests a genetic component. But it might also be that parents tend to pass on negative ways of thinking to their children. Depressed families are more likely to criticise and put each other down than others and if you were brought up in such a household, you are more likely to feel bad about yourself as an adult.
Cultural factors also play a part. Women, for instance, are twice as likely to be diagnosed with depression as men, perhaps because they tend to internalise their aggression which then manifests itself as depression. Men are more likely to become violent or turn to drink. However, it may be that women's depression is more easily diagnosed as it is often deemed more acceptable for them to express their feelings.
The fact that men suffer inwardly is shown by their higher suicide rate.
Where people with MS are concerned, it is often hard to tell which depressive symptoms are due to psychological impairment caused by the disease itself and which are a personal response to loss or to difficulties in coming to terms with the condition.
'It is often hard to tell which depressive symptoms are due to psychological impairment caused by the disease itself.'
Research does indicate that MS affects the way people think. One study used sensitive psychometric tests to compare an MS population with rheumatoid arthritis patients who had an equivalent level of physical instability. Memory and concentration problems affected well over a third of people with MS, while those with rheumatoid arthritis were unaffected.
People with MS are also more likely to experience problems with emotional expression and self-control. One man described his experience like this: 'I don't seem able to control my feelings - I cry very easily and sometimes laugh at the wrong times. It is very embarrassing; I can't go out anywhere - I think my wife has had enough.' Nonetheless, I am certain that the way in which people with MS and those around them respond to these potential difficulties will have a powerful effect on their self-esteem and well-being.
The influence of past experience can have an important effect on the ability of an individual person with MS to cope with the present realities. For instance, some psychotherapists believe depression is caused by a deep loss suffered in childhood - losing a parent for instance. If you buried your pain at the time, it may be that the feelings of loss and mourning brought on by the diagnosis of MS also trigger some of that past hurt. You may be dealing with a 'double dose'.
Other people's attitudes
The way others respond will also help determine whether or not a person with MS becomes depressed. One crucial factor, for instance, can be the attitude of the doctor who originally diagnosed the MS. An inadequately trained or defensive doctor, who falsely reassures or unnecessarily alarms a patient, can have a devastating effect on the future happiness of people with MS. Some doctors may distance themselves from the emotionally difficult aspects of MS to protect themselves from painful feelings like sadness, guilt or helplessness. It's actually worth remembering that doctors themselves can get depressed - in fact statistics show they're more likely to than people with MS!
'Distress can become overwhelming, and emotional and physical abuse can be a feature of relationships involving people with MS.'
On the other hand, a doctor who listens, shows respect, understands and accepts a patient's feelings, and answers questions honestly and adequately can make a world of difference.
Friends' and employers' reactions also have an impact. Many MS symptoms are invisible to other people, who may tell the person with MS that feelings like fatigue are all in the mind or that they're exaggerating to get attention. Equally, well-meaning acquaintances can disempower the person with MS by over-compensating for their disabilities and behaving in a generally patronising way. Both can result in the person with MS feeling isolated and misunderstood, and can contribute to depression.
Within the immediate family, MS can undoubtedly cause considerable anguish. If the basic relationship between a couple is poor, MS can be made a scapegoat for all kinds of problems, but even a good relationship can be stretched to its limits. MS often leads to sexual dysfunction which can cause immense frustration. Incontinence
can complicate the situation and lead to self-revulsion and depression.
Jekyll and Hyde
Repressing anger is believed by many experts to be a major factor in depression and people with MS find it notoriously hard to express angry feelings, especially if they are dependent and fear rejection, or if the person without MS feels guilty. When feelings of resentment or guilt are hidden, relationships can easily become unhealthily dishonest and manipulative. An insecure individual with MS, for instance, can adopt an unnecessarily dependent role, thereby creating resentment, or a caring relative might compensate for underlying wishes to reject by being aggressively overprotective.
The problems in relationships already strained by the mutual frustration of dependency are exacerbated when a person with MS, perhaps cognitively impaired behaves in a way that seems thoughtless, uncaring, self-centred. Sadly, but not surprisingly, distress can become overwhelming, and emotional and physical abuse can be a feature of relationships involving people with MS.
The wife of one man with MS said: 'He has become selfish and bloody minded - not the same person I married. He loses his temper very quickly and struck our son with his cane the other day. But when the nurse comes in, he is all smiles and chat - a Jekyll and Hyde character if ever there was one!'
To add to any difficulties, children can become disruptive if their needs are ignored. If MS is not explained to them at a level appropriate to their age, they may feel excluded from a frightening family secret. Some children feel guilty, believing they are an unwanted burden for the people with MS, while others become over-responsible, 'little adults', and miss out on being cared for as a child.
What about treatments?
All in all, it's easy to see how depression can seep in, and sink people with MS (and those around them) into a downwards spiral. So what can be done about depression? Basically, there are two kinds of treatment and I often recommend them in combination.
'Depression is not a sign of weakness or something you can just "snap out of". It's a real illness and needs treatment.'
Firstly there are the pills. Many GPs now prescribe antidepressants which lift people out of their depressed mood by stimulating the chemical reactions of the brain. They have a good track record and are not addictive. The new selective serotonin re-uptake inhibitors (such as Prozac, which has received a lot of media attention) work quickly -in about ten days, though they need to be continued for at least three months. I think of them as battery rechargers, recharging an exhausted brain.
Secondly there are the 'talking treatments'. Confiding in someone who can really understand can be extremely therapeutic. In the worst cases, being able to talk to someone might make the difference between a person committing suicide or not.
Two of the most common forms of professional counselling or therapy are psychoanalytic and cognitive. A psychoanalytic approach aims to understand where the depression comes from and involves digging deep into your past and unconscious feelings. (This might be useful if you sense your problems go back to childhood.) Cognitive approaches concentrate on helping you alter the here and now. They try to change negative patterns of thinking and behaviour (exaggerating the bad things, expecting the worst, thinking everyone hates you) towards a more positive approach. Many therapists use a combination of the two. The cognitive approach will perhaps be less effective on people with MS with a lot of cognitive impairment
Discuss with your doctor which treatments are most likely to help you. Incidentally, if your GP is unsympathetic or dismissive, change your GP. Remember, depression is not a sign of weakness or something you can just 'snap out of'. It's a real illness and needs treatment.
Good respite care is an absolute essential, especially when families of people with MS are feeling the strain and getting on top of one another. If you're feeling depressed it can be hard to motivate yourself to book a holiday - you feel that nothing in the world could cheer you up. But from personal experience I can tell you that getting away from your normal routine and the people around you from time to time is most beneficial.
Is there an alternative?
As far as complementary medicine is concerned, I have to admit there is no clinical evidence of it making any difference to healing depression. However, some people may well find that treatments like aromatherapy, homeopathy or massage help them to feel they are taking better care of themselves and so enhance well-being. If you find these remedies helpful then there's no reason why you shouldn't use them alongside orthodox treatments.
This depends upon the degree of the depression. Someone suffering from severe clinical depression will not feel like doing anything at all, and will only be made to feel worse by the suggestion that they ought to pull themselves together and work at healing themselves!
If you are depressed, accept that you are not well and treat yourself gently, as you would with any other illness. Be aware that your negative thoughts and beliefs about yourself and your life are a part of your illness and that judgements are likely to be impaired. It's best to avoid making any important decisions about the future in terms of relationships or jobs, for instance.
If your depression is not severe or if you sense you are slipping into a depression, you may be able to halt the downward spiral by looking after yourself better. Get enough sleep, cut down on alcohol (a notorious depressant) and ensure you're not having to deal with too much stress. If you're feeling angry, frustrated or sad, try to express it openly rather than bottle it up.
Dr Sandy Burnfield is a consultant in child and family psychiatry and is President of the Winchester and Andover Branches of the MS Society. He has had MS for over 30 years and helped to found Persons with MS International. He is currently a Trustee of the MS Trust (UK), and author of Multiple sclerosis: a personal exploration. (First published in 1985. Seventh edition revised reprint 2001 from Souvenir Press, London.)
Coping with Fatigue in MS Takes Understanding and Planning
by Dr Alexander Burnfield MBBS DPM FRCPsych
What do we mean by fatigue in Multiple Sclerosis?
Fatigue is a sensation that is both universal and very specific to people who have Multiple Sclerosis. The fatigue that all people experience is due to tiredness and weakness affecting muscles after exercise or exertion. In Multiple Sclerosis, the fatigue that many people have is rather different since the nervous system as well as the muscles are involved.
The cause of MS fatigue is not fully understood. What may happen is that great difficulty is experienced in the transmission of nerve impulses along demyelinated nerves. The strength of the impulses is much reduced, resulting in feelings of weakness and tiredness. Sensory nerves as well as motor nerves are involved in this kind of fatigue.
Fatigue of motor nerves can cause weakness, a tired heavy feeling of muscles, in co-ordination and shakiness. Fatigue of sensory nerves, which help us to see, to hear, to taste, to smell and enable us to distinguish how objects feel, can cause problems in one or more of these senses. When we are fatigued, we don't just experience a heaviness, but we may also have blurred vision, numbness, or other difficulties in the sensory system.
Fatigue in Multiple Sclerosis may be brought on by exertion, but it can also occur for other reasons. It has been discovered that fatigue can be caused by eating a heavy meal, by smoking and by hot temperatures; for example, having a hot bath. This last experience is so universal that a 'hot bath test' has been developed by MS. I expect that this is your experience too, because it has been well documented by research into MS and fatigue. The results can be experienced as heaviness or impaired vision after exercises and hot weather.
Old symptoms may return if you are fatigued. If you have been exercising or having a hot bath, you may find that symptoms experienced during a previous relapse come back Sometimes you may wonder whether you are having another attack I once had a very late night, and when I lay down to go to sleep, I had severe vertigo. I thought, 'Oh no, not another relapse!' It wasn't. I was just very tired, and it was the effect of fatigue. It soon cleared up.
MS fatigue seems to happen faster than ordinary fatigue. For instance, if I begin to dig the garden, I start off well but about three or four minutes later, I feel very tired indeed. I used to wonder what the devil was going on, and my wife thought that I was trying to get out of the workl (That is a problem I will deal with later - the problems that fatigue causes psychologically and in relationships).
Problems caused by fatigue in MS
In a recent Canadian survey of people with MS 40% cited fatigue as their most distressing symptom. Unfortunately, having fatigue can cause a lot of problems - physical, psychological, family and social. Physical problems are perhaps the most obvious at first. For instance, you can't do the same job, if you are a manual labourer, without getting very tired and exhausted. Fatigue may cause problems in other parts of your life as well. It may be more difficult to look after children who are young and active; it may be impossible for your sex life to continue in quite the same way as before.
Psychological problems can develop if an early diagnosis is not obtained. People wonder what these strange feelings are that they have when they are tired. They wonder why the symptoms occur, why the doctor says there is nothing wrong with them, and why, after they have been to see the doctor several times, he or she seems to suggest that they are neurotic! It can happen that people who have MS are labelled as having psychiatric problems in the early stages. In some cases, MS may not progress beyond the feeling of tiredness or blurred vision and may, therefore, never be diagnosed.
Even after MS is diagnosed, it is difficult for doctors (general practitioners especially, who may only see two or three people with MS in their practices) to understand the subjective side of MS, the symptoms that we have. Neurologists see more people with MS, but they don't see them regularly, and they don't get to know them as people. Therefore, for different reasons neurologists may also fail to pick up what is fatigue and what is a reaction to having a chronic illness like MS - a feeling of depression or anxiety.
People with MS are often depressed and worried about what is happening. This is a natural reaction. Unfortunately, the symptoms of anxiety and depression are similar symptoms to those of fatigue. You experience heaviness, a lack of energy, a feeling of tiredness. Who is to say what is depression and anxiety and what is MS? It is extremely difficult to tell as I myself found out when I experienced all of these things at once. The result is that, as you become more depressed, the more you wonder what is going on. Until you have sorted it out with help and understanding - by talking it over with someone else who has MS, perhaps - you have to deal with a lot of anxiety. After talking to others, they often feel relieved and know that their feelings are normal. They are not the psychiatric cases they feared themselves to be!
If I hadn't had MS, I should have been able to dig in the garden for about an hour before fatigue was experienced. Recovery from MS fatigue also takes much longer than from ordinary fatigue. When I have had a hot bath or too much exercise, I have to lie down for at least half an hour before I recover.
Some people find their speech becomes worse after exertion or being overheated, or fatigue may cause tingling in the hands and feet, like pins and needles. It varies very much from individual to individual, so one person with MS may have much less fatigue after exertion or hot baths than another.
What causes fatigue in MS?
(Diagram at this point)
The drawing of the two triangles illustrates how signs and symptoms are exaggerated after exertion or overheating or infection. Triangle A represents the 'before' and Triangle B represents the 'after'. The tip of Triangle A represents the 'signs' that can be detected by the neurologist when he or she examines you (reflexes that are exaggerated or inverted, weakness, poor co-ordination). The middle section represents the 'symptoms' you yourself feel - heaviness in the limb; blurring of vision; tingling in fingers. There may be no corresponding signs that the neurologist can find. I began to lose faith in neurologists to some extent because they often told me there was nothing wrong with me, ,and that my symptoms would completely disappear. I was assured several times that my vision was normal, but I knew subjectively that it wasn't. I was also assured that the tingling sensation would disappear from my hand, which it hasn't completely.
At the bottom of the triangle is a large section label led 'silent area'. This represents the damage to the nerve insulating area, the myelin. A lot of demyelination takes place in our brains and spinal cord when we have MS without necessarily producing any symptoms or signs. So the silent area represents myelin damage, that for the moment, is not causing either symptoms or signs that a neurologist can detect.
Triangle B illustrates what happens after exertion or after a hot bath. The person experiences more of the neurological damage caused by the disease; he feels more tired; his vision appears worse to him; he has pins and needles; he feels almost flu-like, with a horrible feeling of fatigue. Therefore, the symptom area of Triangle B is accordingly much greater. This illustrates why the hot bath test is useful in testing for multiple sclerosis. If you feel there is something wrong with you, but don't show any neurological signs on examination, you might be given the hot bath test. If signs show up after the bath, the neurologist could then say, 'yes, there are signs of MS. There is neurological damage'.
As you can see, the silent area is still there, but is smaller than before. The person is experiencing the damage that exists in the silent area, but which does not ordinarily show up. Indeed, in some people the signs and symptoms of multiple sclerosis remain silent their entire lives. A Swiss pathologist (someone who studies damaged tissues) discovered that, out of a series of people who had MS identified by post mortem examination, about one in five had not been diagnosed clinically. No one, including the people themselves, knew they had MS. If their conditions were illustrated by a triangle, you would see a large silent area. Perhaps when they were fatigued or ill, some slight symptoms may have been present, but possibly no signs ever showed up. Some of them may have been diagnosed as having conditions other than MS.
To summarise, when we become fatigued, we have a shift downwards in the triangle. We become more aware of the symptoms, and the signs of the disease become more obvious to an observer.
I mentioned that problems can occur in relationships because of fatigue. In my case, Penny (my wife) complained I was trying to get out of doing the gardening. I had fatigue which I couldn't understand or accept, so I would persist in trying to garden, but then find out that I just had to sit or lie down for a while. When we talked to other people with MS, we discovered that what was happening was normal. Now we make allowances. She does the practical, manual things about the house, and I do paperwork and things which don't require so much physical effort. We have adjusted, I have changed my role, and she has changed her role. I think it is very important that the role changes be tackled head on, and that people be encouraged to change roles realistically. This requires understanding by all members of the family, not just the person who has MS.
Role changes also apply to sexual activity. If the more sexually assertive partner develops MS, it may be necessary for the other person to become more active. Otherwise, their enjoyment of sexual relations may be impaired and may completely stop. It may even cause marriage breakdown if they misunderstand each other. The partner without MS might think the other one isn't interested anymore. A lot of problems relating to the sexual side of life occur in healthy people, so it is not surprising that people who have MS experience them as well. I am only dealing with fatigue now, but, of course, other sexual adjustments may have to be made as well.
What can be done to help?
In relieving the effects of fatigue, I think it is important to understand, to realise that fatigue does occur, and that it is an integral part of having MS. It is important not only for us to understand it, but also for our relatives and our employers to understand and to help us make adjustments in our lifestyle. It is important to express our feelings and our worries, and to talk with other people with MS who have experienced fatigue so we can work out how it affects u& I think it is also important that those in the health care professions such as nurses, doctors, physiotherapists and occupational therapists understand fatigue. They must understand that MS can cause fatigue which can show up to varying degrees in different people. Therefore, education for health care professionals must continue.
I think it is absolutely essential that we keep physically fit. We can't do much about our nerves, except avoid hot baths, I suppose, but we can keep fit within the scope of our physical abilities. We don't usually expect to do athletics - running, for instance, but we can get exercise in other ways. Exercise must not be overdone, but it must be sufficient to keep you fit. Each person should arrange a balanced programme that suits his or her likes - swimming, yoga, callisthenics, whatever. I have found the best routine for me is to exercise fairly strenuously twice a day and follow the sessions with a short rest.
Other points to follow: Give up smoking. Lose weight if you are overweight. Follow a sensible diet.
You must plan your work routine, your social occasions and your late nights so they don't all come in a row. Unfortunately, it doesn't always work out very well in practice, and I sometimes find I am going out every night of the week I realise I am in danger of causing a relapse, but sometimes it is very difficult to plan ahead. But we do need willpower, and we must be able to say 'No'. Moderation must be the word so that you don't overdo, and yet don't opt out and underdo.
Many people find that they are most affected in the late afternoon when the body temperature is at the highest point of its cycle and when exhaustion is natural towards the end of the day. I find that my mind and body work best in the mornings and so I try to do jobs which need concentration and effort then. I can sometimes take a rest in the late afternoon and then after a cool shower I am ready to make the best I can of the evening. You may find that this pattern helps you too, but it is worth experimenting to find out the daily routine that suits you best as an individual.
There are some specific activities, as well, that we can do to deal with fatigue. Physiotherapy can help people regain the use of muscles after a relapse. Co-ordination exercises are also important. Yoga can be helpful, as well. Yoga is a form of physiotherapy. It is also a form of training, a discipline. One of the main principles of yoga is that you never do anything beyond your capability. It is completely non-competitive. You go to your own limit and no more, and therefore, it is ideally tailored for people who have MS. To quote a woman who has been involved with yoga for some time:
'I know, of course, that yoga will not restore nerves and muscles which have been irreparably damaged by MS, but it is certainly helping me to maintain a better standard of general health than previously, and the breathing exercises and relaxation have resulted in a calmer state of mind and a happier outlook. Yoga has given me a new interest in life, and also introduced me to a new circle of faces and friendly people'.
That is it exactly. Yoga doesn't do anything to nerves which have been damaged but it is one way of keeping fit, and by joining a group, you make sure you receive regular exercise.
Yoga combined with a rest/exercise programme of a more traditional sort could be a good way of planning one's life. It is in my day. I don't pretend to be a paragon of virtue, but every morning I spend about four minutes doing press-ups and yoga, and I do another four minutes in the evening. That is only eight minutes a day, but if I do it every day and if you add it up over a month, it is quite a lot of exercise. The important thing is not the length of time, but the regularity.
An additional benefit of regular exercise, some people report, Is the reduction of muscle spasms. Spasms occur when a muscle goes into a strong contraction and doesn't relax. It can be quite painful. In some people they occur when they are fatigued, so by following a regular regime of exercise and rest, they are able to avoid this particular complication. Specific medications can also help prevent muscle spasms.
In conclusion, fatigue is very much a symptom of Multiple Sclerosis but one that can be managed if it is understood. Fatigue may be experienced as overwhelming tiredness (lassitude) or as sensory difficulties - blurred vision, slurred speech, pins and needles, numbness. Fatigue may be brought on by exertion, heat, infection or over eating. When fatigue is experienced, the signs and symptoms of MS become more pronounced. Unless fatigue is recognised and understood, people who have MS may be thought to have psychological problems by their families, friends and employers. Talking with others who have fatigue about the problems this can cause, and to learn methods of overcoming them. A regular exercise programme is helpful in becoming and staying fit. Moderation is the key to leading a full and happy life, but occasionally extremes give
Originally published in MS Canada in 1983. Revised 1989
Multiple Sclerosis - Changing relationships
Authors - Burnfield, A and Perham, B
Published - MS News MS Ireland No 72 Winter 2003 pages 6 and 7
Partners can find it hard to cope and are particularly stressed because they have the choice to leave the person who has MS. Separation or divorce can result, and is more likely when the person who has MS is female. Whereas adults may try to deny relationship problems, younger members of the family can often express, more clearly, the reality of the situation.
My mum loses it with me all the time. She makes me feel so guilty. I am sorry she has MS but I am beginning to hate her. I wish my Dad would leave her and take me with him. I feel so depressed at times
Hostility, whether expressed directly or indirectly, is common in MS relationships. People with MS may find it hard to express angry feelings, especially if they are dependent and fear rejection, or if the person without MS feels guilty. When feelings of resentment or guilt are hidden, relationships can become dishonest and manipulative behaviour or "games playing" can occur.
As kids we can't win. Dad's started yelling at us because he has MS and Mum yells at us because she is always angry. Home is not the place it used to be
As a family we used to do everything together. Now that we have less money we argue more and rarely go away on holidays. Mum is really defensive about that and refuses to talk about it. For us it's just sad
Children - often not heard
Comments from children can reflect the turmoil that may occur in their parent's relationship, but parents can be reluctant to listen. The more progressive the MS the greater the stress on all family members, and parents are not able to deal with the implications so effectively. Children may become disruptive or attention-seeking if their needs are ignored. MS should be explained to them at a level that is appropriate to their age. They may be particularly distressed if they feel excluded, or if they believe that there is a frightening family secret.
When I found out my Dad had been diagnosed with MS 2 years ago and I had not been told I was furious. While I could see the reasons why I felt hurt, I felt like I had lost 2 years with my Dad, as I didn't't spend the time with him that I could have
I know I am a bitch to Mum. I just can't help it. My life is shit. I know Mum can't help it, but no one has to spend as much time at home as I do. I feel resentful then I feel guilty. No one really cares what I feel
Samantha age 14
Some children learn to feel guilty either because they believe they are the cause of the parent's MS or because they feel that they are an extra and unwanted burden. This can lead to depression or to behaviour problems at home or at school. Some children try to compensate by becoming very involved in helping a parent with MS. This can work out well, and many such children develop into mature and understanding adults. Some, however, grow up too fast and may miss out on being cared for as a child, becoming over-responsible "little adults", and finding relationships difficult.
You don't know when you should be doing stuff or when you should let your Mum do it. If you do everything for her it takes away her responsibility
Darren, age 17
I just knew I couldn't't cope with my mum having MS. I never wanted to come home, I never wanted to help. I just wanted to escape. Everyone thought I was terrible. Looking back it was too much for a 14 year old to deal with. Miriam, my sister did the opposite and did everything for Mum. Yet Miriam feels she `lost her childhood'. No one won really
Ailsa, 22 (looking back)
A pattern of poor communication will become established if children are not “connected” to the emotional experience of the parents from early on. It is easy to underestimate the impact on the child, and so to under value opportunities to explore with the child their thoughts and reactions to the parents' MS. The earlier this process starts the better will be the outcome.
The Impact of cognitive impairment and invisible symptoms
For many families, psychological impairment related directly to the MS disease process is the cause of much anguish and misunderstanding. Invisible symptoms, like MS fatigue, are frequently misunderstood.
It was hard to make sense of Dads erratic moods. At times he would act like a `man possessed'and at other times collapse on the couch exhausted. When Mum told us MS could cause cognitive changes, it all made sense
I start off washing the dishes OK but soon get very tired and can't finish - my partner says I'm putting it on
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 think my wife has had enough.
She is so irritable and doesn't understand how tired I get - I haven't had a break for 3 years and I can't remember how long it's been since I had a full night's sleep
He has become selfish and bloody-minded - not the same person I married. He loses his temper very quickly and struck our son with his cane the other day. But when the nurse comes in, he is all smiles and chat - a Jekyll and Hyde character if ever there was one!
Helping people in MS families involves listening, freeing-up communication and providing respite care and practical assistance.
Why should it be our Mum and our family? We are just trying to be normal. We are normal
Alexander Burnfield MB BS DPM FRCPsych
Retired Consultant in Child and Family Psychiatry, Hampshire, UK
Trustee, The Multiple Sclerosis Trust (UK)
Bruce Perham BA BSW CFT (Family Therapy) DNT (Narrative Therapy)
Counsellor, Early Stage Dementia Program, Alzheimer Australia, Victoria
Formerly Senior Social Worker MS Society of Victoria, Australia
BURNFIELD, A. (Reprinted 2001). Multiple Sclerosis: A Personal Exploration Souvenir Press, London
BURNFIELD, A (1995) The Psychosocial Impact of MS
Int.MSJ 2, 1, 33-35
PERHAM, B (1995) MS - Sharing the family experience
Multiple Sclerosis Society of Victoria, Australia
Family Camp program (1996-2000) MS Society of Victoria, Australia