Dealing with an MS Diagnosis

When you are faced with the fact that you have a chronic illness your life is changed drastically. Your health is no longer a matter of something you take for granted: from now on you will have to take all sorts of things into account. You need to be ready to adapt to all kinds of changes, and to experience strong emotional reactions.

In the next few paragraphs, you will find a list of various emotions that often arise in people with a chronic illness, with a brief description of the emotion. Sometimes the emotions arise singly; sometimes they are combined with one another. This list is meant to help you to identify the emotion you are experiencing when you feel down or dissatisfied in your new situation. If you can identify your emotions, it is often easier to talk to others about them and in doing so, you are taking the first step on the road to adapting to your new situation.

Disbelief/Shock

When the first symptoms of a chronic illness become noticeable you may start off by trying to ignore them. You do not know what to think: you think you are going 'crazy', that you are imagining things. Once a doctor has diagnosed the MS it can mean an enormous sense of relief for some and a tremendous shock for others. Relief because the diagnosis of MS means an end to a prolonged period of uncertainty with visits to the doctor and medical examination that showed no definite cause for the symptoms. Or it is a shock because you have heard about MS or know someone who has it.

But it can also happen that in the beginning you react coolly and calmly, and the emotions only come later. Or you start off unable to believe that this could be happening to you, and you doubt the doctor's diagnosis. But whatever your first reaction is, the message that you have MS brings about a crisis in many cases. The first stage of feelings of relief usually gives way to fear, depression and anger. This is no strange thing when you enter a crisis. MS usually starts between the ages of 20 and 40. This is often the period when you are making all sorts of plans and are taking on long-lasting responsibilities and relationships.

The question then arises: "What will I still be able to do in the future?" And this question gives rise to insecurity about the future. This can knock you off balance and means that you must find a new (mental) balance by coming to terms with the news and by accepting the fact that you will have to learn to live with the disease. Coming to terms with this new situation is a complex mental process that takes time and has several phases. But after some time, everyone finds a way of coping with MS.

Anger/Frustration/Jealousy

As far as the emotions are concerned, being struck down by a chronic disease is felt to be unfair. It can lead to anger at fate ("Why me?"), anger at the unfairness of it all and it can give rise to feelings of jealousy regarding healthy people. There will be occasions when you feel powerless, and this can

lead to even more anger. This sort of emotion especially can lead to social problems. Because there is nothing to be angry with (you cannot 'blame' anyone) you may take out your anger on those around you or people helping. For instance, you might be angry with the doctor because he cannot cure you or, so you believe, is doing too little to help. You might feel frustrated because - unlike other people and in contrast to the past - you can no longer do certain things or because you are constantly being required to change your lifestyle to adapt to your illness.

Because you are angry, you will sometimes not want to accept help offered by others, even though you need it very much. Or others might be less ready to offer help because you treat them in such an unfriendly way. But despite all this, it is good to express your anger, your frustration, or any related feelings, because this will help you to learn to live with MS step by step.
Fortunately anger and frustration are usually only temporary, and these emotions change with the phase of the illness you happen to be in.

Feelings of fear are quite a common and an understandable reaction to a chronic illness. A sudden relapse or a sudden change in the course of the illness especially shows you very clearly that you are vulnerable, and it can be accompanied by fear. There is also a change in the way you look at the future. Thoughts like: "What if I become an invalid?" or "What does this illness mean for me and my family?", "I don't know what my own body is going to do any longer", arise. In other words, your future seems uncertain because the course of the disease is unpredictable. For some people, the greatest fear is that they will lose control over themselves or over their own life. This happens particularly when others take over "your tasks". Control over your own life is closely related to your feelings of self-esteem and the image you have of yourself. If your self-esteem is lowered or your image of yourself is decreased (for instance, because you can do less than you used to or because your position in the family has changed) this can lead to depression. It is no easy thing to recover the balance in your life. The readjustment may take a lot of time and effort and therefore it may take some time before you start valuing your life again.

Denial

It is not easy to admit to yourself that you are suffering from a chronic illness, but it is an important condition if you are to end up adapting to your new circumstances. It is also perfectly normal that you should sometimes find it difficult to admit that you have a chronic illness. Denial provides a respite when, for a brief time, you have no worries about the future. Occasionally a break like that is necessary so that you can come to terms with the unwelcome news bit by bit. But coping with your disease does become more difficult if you persist in denying that you are ill: ("There's nothing wrong with me", "The doctor's got it all wrong") and go on stubbornly trying to do everything you used to be capable of. This sort of attitude often arises from the wish to take control of your life again. However, it blocks the process of coming to terms with and adapting to the illness. It could even end up with you refusing to accept help that could be particularly important. In cases like this, it is far better to define a new lifestyle for yourself, one adapted to whatever the MS still allows you to do. In fact, if control for you means fighting against changes, you will soon notice that you are less able to adapt to the illness. Often the best way of gaining control over your life is to let everything go.

Feelings of guilt

People suffering from chronic illness often experience feelings of guilt and self-blame. But we do not know what causes chronic illnesses and nobody is to blame for the problems brought about by the illness, which is why you have absolutely no reason to feel guilty. But the reason you are troubled by feelings of guilt and self-blame has to do with the fact that you feel powerless, blaming yourself for all the problems is a way of overcoming this feeling. It is, in a manner of speaking, better to blame yourself than not to know where to look for the enemy.

Guilt feelings can also be related to changes in the relationship you have with others, such as your partner or your children. Mothers with young children are especially vulnerable to feelings of guilt. This can come about because it is no longer possible to undertake certain activities with your children. You can start blaming yourself for not being a good mother or because you have the idea that you have let your family down. But research has shown that children growing up in a family with one chronically ill parent are not affected in a negative way. On the contrary, children learn to cope with your limitations, learn how to live with the new situation and become more helpful, which in many cases lead to closer mutual bonds of affection.

Embarrassment

You can start feeling embarrassed because, for example, you notice that you cannot walk properly anymore or because you have problems of incontinence. It can be difficult to talk about emotions such as embarrassment. It can be that you feel ashamed of having such emotions. But it is quite normal for you to have these feelings.

You may get the idea that you should keep the emotions to yourself and put on brave face. This may tend to make you look at yourself and reject your own negative feelings ("Don't make such a fuss!") which make you consciously act more bravely than you feel. And so, the people around you do not get to know how you really feel. They get the impression that you can cope with it all on your own, while that is not the way it is at all. But you will always need more or less help from others to solve the problems you will be confronted with, no matter how strong or clever you are. So, try to avoid exaggerated bravery and take your own feelings seriously.

Distress

Many people feeling distress or sorrow tend to withdraw. Crying on your own, being alone with a feeling of emptiness and loss. And at times like that you will notice that you do not think about the future but only about the past "when everything was going so well". And once it is over you may feel gloomy and listless ("What is the sense of it all?") After some time, you will notice that you start feeling that your life is worthwhile again, despite the fact that every time your situation gets worse you have to give up certain activities that you have always enjoyed. Then you start to find new activities which give you pleasure in life again. You are adapting your lifestyle to your illness.

Sometimes you might not want to burden the people around you with your sorrows and might be inclined to swallow your distress that you so desperately want to talk about.

It is extremely important to express your sorrow so that you can fully come to terms with the feelings of loss that a chronic illness inevitably brings with it.

Loss of self-confidence/loss of self-esteem

A chronic illness can mean that you lose some skills or bodily functions. For instance, you may have problems dressing yourself, writing, speaking clearly or doing sport.

Sometimes the problems are temporary, sometimes you have them for good. If your condition gets worse every time you have a relapse it can also result in a loss of independence. This situation can be a threat to your self-esteem. You may start thinking: "What use am I now, what use am I to others?" and these thoughts can cause you to lose self-confidence. You can also be afraid that your family or your partner will reject you. But when the relationship is good, others will accept you and value you for what you are.

Depression

Depression is an illness which is both mental and physical. The main symptoms are feelings of sorrow and distress, gloominess, despair, or irritability. Most people have times when they briefly feel gloomy or sad. But if such feelings continue or become so severe that they start to interfere with your work or your personal relationships, then you are suffering from depression.

A chronically ill person can feel gloomy or extremely down because of the illness. Your awareness of personal problems can be made more acute because of depression. The damage that MS causes to the central nervous system can sometimes also lead to depression. In addition, the fact that you are suffering from MS can make it more difficult for you to cope with depression.

Depression following the news that you have a chronic illness is a normal and very understandable reaction. Actually, in such cases we should not call it depression because the presence of your illness is the reason for your feeling down. In true depression ('major depression') the connection between the cause (chronic illness) and effect (depressed feeling) has disappeared.

The depressed person feels much gloomier than can be explained logically. Fortunately, there is a lot that can be done to help the depressed. But before you can start treatment it must be noticeably clear that you really are suffering from depression: it must be identified.

Everyone is different. So, it is not surprising that nobody experiences depression in the same way. The severity of the depression, the duration, and the sorts of symptoms - they can all be different. The symptoms that affect you the most may be less apparent in someone else. But in general, there is agreement between the symptoms.

Check List of Symptoms for Identifying Depression:

• Feeling sad, gloomy, weepy, or irritated *
• Loss of interest in activities that you would usually enjoy *
• Problems with lack of sleep or sleeping too much.
• Tiredness or lack of energy
• Feeling slowed down or being restless and not able to sit still.
• Changes in appetite, weight loss or weight gain
• Feeling worthless or guilty
• No more interest in sex
• Problems concentrating or thinking.
• Lack of motivation
• Thoughts of death or suicide

According to the official definition of depression you can say that someone is depressed when at least five of the symptoms listed on above are present. At least one of the symptoms must be one of those marked with an asterisk. The symptoms together must have lasted for at least two weeks at a stretch.

If you are suffering from depression, you will often feel isolated. You may hesitate to tell others about it. Perhaps you think that you can get over it without help and so you fail to ask for help until the depression has become severe. But do not forget that depression is quite common.

One in four women and almost one in seven men suffer from it at least once in their lives. If you get help in time, you can avoid a great deal of distress because nowadays depression can be treated.

For help you can turn to your neurologist or GP, the rehabilitation centre, a psychologist, psychiatrist, psychotherapist, or a social worker.

In the event you are a member of the National MS Society in SA, you can ask for a referral in your area.

Acceptance

As you read these words, perhaps you are still a long way from accepting your illness. And maybe you even think that you will never reach that stage. Just thinking about it makes you angry. You may find it hard to believe that there will come a time when your life becomes worth living again. Accepting your illness (adapting to it) usually starts with talking about the disease and admitting that you need help. That is the way you learn to fit the illness into your life. But in every case, it takes time to come to terms with a chronic illness. Some people need more time than others. And the people around you need time and help to learn how they should deal with you. In the end, your illness can cause you to have new interests. Some things can become more important for you than they used to be.

The general emotional reactions already described above do not include all the feelings that you may experience when diagnosed with MS. The reality of the illness can bring into being several other, special emotional reactions. These are briefly discussed below.
 
The specific emotional reactions to MS

Uncertain diagnosis

Diagnosing MS can be a lengthy process, with a great deal of uncertainty and confusion. Not knowing what is wrong with you can be the cause of a great deal of insecurity. And when the doctors are trying to diagnose MS, several medical examinations are needed because the illness can start off with a great many symptoms that are not exclusive to MS (such as fatigue or a tingling feeling in the fingers).
Fortunately, with the use of MRI (Magnetic Resonance Imaging, a scanning technique that uses images of the brain and the spinal cord), it has become easier to determine the diagnosis. Knowing that you have MS can also lead to a feeling of relief: finally, your symptoms have been given name.

The unpredictability factor

Usually, once MS has been diagnosed with certainty, a new period of uncertainty starts. You realize MS is incurable. The disease that has slipped into your life without you wanting it to, will never go away again. All sorts of questions can enter your head, such as, "What will MS mean for my day-to-day life?", "What does it mean as far as my work is concerned?", "What about my partner?" and "Does this mean that I'm always going to be ill?" Your plans are no longer as certain as they were.

The fact that it is difficult to predict how MS will develop makes your life as a PwMS unpredictable. And what may apply to one PwMS does not necessarily apply to another.

It could be a good thing to talk to your doctor to ask him or her what your future is likely to be (your prognosis). This can help take away a lot of the uncertainty about what is likely to happen to you.

It can be difficult accepting the fact that in future you may often have to change plans because of your MS. In this sense, MS forces you to adapt continuously and requires you and your family to be flexible. You should try to make alternative plans, to avoid disappointment if your original plans are no longer possible because you feel too tired or too weak. That will improve your quality of life. The day- to-day reality is the only certainty that you have. The future is unknown - but there is certainly hope since rapid developments are being made in new treatments for your illness.

Hidden symptoms

Some symptoms such as tiredness and pain can be hidden from the outside world. This means that the people around you may expect more of you than you are capable of at any given time. You might be blamed for lack of initiative or laziness. People show little understanding if you "do nothing the whole day". In addition to your own frustration, you may also have to deal with the frustrations of those around you. It is quite possible that the remarks and reactions of others become a source of stress. It can help to share your doubts and stress with other PwMS. Hearing from others how they cope with themselves, and the outside world can give you a clearer picture. It can help you to become more resistant.

Asking for help can be difficult.

Sometimes it can be difficult to ask for help from friends or social workers or others. Maybe you do not want to admit to yourself that this is necessary, or you do not want to bother others with your problems, or you do not even know where to look for the help you need. However, problems become less troublesome when you can talk them over with somebody. You can try to find a solution together. In addition, having someone else to talk to from time to time will help ease the stress on your spouse or children.

To avoid problems, it is of vital importance to seek the help of professionals at an early stage. A good starting point is often your National MS South Africa Society as they organise support groups where the peer to peer support groups are invaluable in terms of finding people who have the same challenges as you.

Treating depression

Possibilities for treating depression.

Thirty to forty percent of PwMS suffer a moderate to severe depression some time in their life. Many others have a milder form. Depression can sometimes be a side-effect of the medication.

What is important for you is to know that depression can be treated and in a number of ways. Sometimes the best help comes from a good friend, sometimes an MS discussion group provides the appropriate support. In other cases, you may need to call on professional helpers - your general practitioner, your rehabilitation specialist, or your neurologist. If needs be they can refer you to a social worker, a psychologist, or a psychiatrist.

Emotional adaptation to MS: guidelines for self management

When coming to terms with the diagnosis of MS, you will start to accept that MS has become part of your life. You start talking about the disease and its effects and you will learn to accept help from others. These two aspects are of major importance in adapting to illness. They open the door to discovering the importance of other values and goals in your life. Eventually you can speak of personal growth once you have integrated the chronic illness into your life and have achieved a new balance. Statements such as: "I would have preferred not to get MS, but as a person I now am more at ease with myself than when I didn't have MS" are often made. Depending on the course of your MS, you may have to repeat the process of adaptation.

Coping emotionally

On the following pages you can find a few practical tips to help you come to terms with your illness and to integrate it into your daily life.

Social participation

Look for opportunities, great or small, to continue your participation in society and to implement your own plans. And make sure that you get out of the house sufficiently, no matter how you do it. Contact with a group of people in the same situation, with whom you can exchange experiences, can be particularly important. Join an MS group in your neighbourhood or become a member of the national MS Society. The national MS Society is actively involved in organizing various kinds of get-togethers or events and plays a key role representing the interests of their members.

Do not allow MS to rule your whole life

Naturally, MS is important, but it is not the only thing in life that counts, neither for you nor for your partner. So, talk about other things and continue doing things you have always done, even though they take more effort. Use the periods when you feel fit to do pleasant things - with someone else or on your own.

Make feasible plans

Make plans that are not beyond your reach. Do not make impossible demands on yourself or on those around you. A realistic approach will enable you to react in a more flexible way to changes in your physical condition. It might also mean that you must decide to cut down on your work or start another job.

Make clear what you can and cannot do

It is possible that after some time you will feel more in control because you know more about MS and have learned how to manage it. At that stage you can make it clear to those around you that you are not an object of pity and that there are certain things that you can still do or no longer can.

You can put things forward for discussion and you should not allow yourself to be patronized by those around you (even though it may be well meant.) This will help the people around you to adapt to your actual needs.

Try to leave your daily schedule and the future open

Sometimes your illness will make it necessary for you to change plans that you have made with others. Take this into account when you are planning and try to make sure you have an alternative plan (a reserve plan for when you are not feeling too good). Try to live more from day to day and leave the future open. It is preferable to keep plans to the short or medium term to avoid disappointments.

Try to think positively

If you focus on the positive aspects of life, it does not mean that the negative things get any less, but it does make them easier to bear. Laughter, even about MS, can provide enormous relief and often helps you to put your worries in the right perspective. Regard MS as a clean start, not as the end of a life that was better. Appreciate yourself as you are and try to banish thoughts of failure, self-criticism, and disappointment.

Look for alternatives

It is not always possible to get rid of the symptoms of MS, but you can do a lot towards making them less of an inconvenience. This can increase the quality of your life. Do not try stubbornly to continue doing what you formerly were able to do without considering the effects of your illness. Replace things you can no longer do with things that you still can (in other words: be flexible). Or slow down the pace. This also applies to your sex life. If you look for other ways of making love that cause you to have less trouble from the symptoms of MS you can still have a pleasurable sex life. By talking to your partner, you can discover ways together that are acceptable to both of you.

And the same thing applies to your day-to-day activities in and around the house: try to share the tasks differently and do it jointly with others so that you and your partner (or other members of the family) feel better about it.

Avoid the negative spiral

Tension or stress is usually regarded as something to be avoided, something negative. But a certain measure of stress is desirable because it can motivate and activate us. Too much tension or negative tension can affect our body and mind (a negative spiral). Negative tension or stress can cause you to withdraw from social activities and to have less contact with friends and family. The decrease in social activity makes you feel less fit, which leads to still less activity with even more depression and tiredness. Physical problems can then start headaches, increased spasticity, a "stuck" neck, and a higher pulse rate. If this goes untreated, there can be profound consequences: insomnia, exhaustion, tightness of the chest, loss of concentration, incapacity to solve problems.

Meditation and relaxation exercises can help you to prevent stress from reaching unreasonable levels. You could also try yoga, for instance, or tai chi. Techniques such as these give you all sorts of ways to reduce daily stress. The negative spiral needs to be recognised at an earlier stage and broken. Sometimes you will require medication to break out of the negative spiral.

Keep moving

Movement is a well-known way of remaining mentally healthy. Many studies have shown that there is a positive link between movement, mood, and better reflective capacity. However, MS symptoms can get worse during movement, and it can take you longer to recover from fatigue. Experience tells us that PwMS still able to walk are fitter, have more muscle power and are less tired and depressed. Bladder and bowel problems can also be less and PwMS feel generally better. So: try to match exercise to your capacities. Start with short sessions; you can increase them when you notice that your physical condition is improving. Your stamina and recovery time usually improves if you exercise in a cool place. And cooling baths can help before and after exercising.

Talk to a doctor you feel comfortable with

Any doctor can write prescriptions and conduct examinations. But a doctor who can discuss personal things with you or can explain difficult things provides an extra important service. A doctor who has time for you, to listen to your complaints and to take them seriously can provide you with a great deal of clarity and satisfaction. So do not hesitate to look for a doctor you feel comfortable with.

It would seem that there are still many people who do not dare to be completely open and honest to their doctor. However, because of the limited amount of time that helpers have for each patient, it is in both of your interests that you express your concerns. Keep to the point as far as possible. And it is important not only to be honest and businesslike but also to tell the whole story accurately. After all, the doctor is much better informed if you say, "My temperature is over a 100", than if you just say, "I've got a bit of a temperature". It often helps to make a list beforehand.

It is your job to provide the doctor with accurate information about yourself. And of course, it is also the doctor's job to provide you with accurate and helpful information. But providing complete information is an art that very few helpers have mastered. So, it happens quite regularly that people coming away from a visit to the doctor will not have heard the information properly or will not have understood properly - let alone remembered what was said. So, you should not hesitate to ask for more details or to ask the doctor if he has folders or brochures on the subject.

Asking a good friend or your partner for a doctor's visit can also be of help, since two heads are better than one.

Look for contacts with people in the same situation as yourself

It can often provide greater clarity and motivation to talk to people who are in the same situation as yourself. After all, they have gone through similar experiences and have comparable questions and problems. And people in a comparable situation can often exchange useful tips and information about how better to deal with MS in day-to-day life. Find out if there is a local MS group in your area. Very often such groups are set up on the initiative of MS patient societies. Your neurologist can also advise you how to contact these groups.

Caring for someone with MS?

Even when your loved one with multiple sclerosis is feeling fine and taking medication to treat the underlying disease, there are day-to-day challenges that come with having MS and caring for someone with the disease. Learn more about what you can do to make every day the best it can be for you and your loved one as well as learn as much about the disease as you can.

Most caregivers of those with MS are family members and spouses whose support and devotion are unquestioned and unconditional. Chances are, when your loved one was diagnosed with MS, you accepted that you would be by his/her side through it all. But love and devotion sometimes need a little help. Building skills, getting help from your community, and advocating for the needs of you and your loved one can all ease the challenge of MS.

Get training

If your loved one asks you to give them their injection, make sure you call your dedicated nurse to receive proper training. Your doctor, nurse or local MS Society can also assist with training.

Be an advocate and connect with other caregivers

Being a caregiver can be about more than providing practical, everyday assistance. It can also mean being an advocate for your loved one. Many caregivers participate with their loved ones in multiple sclerosis fundraisers or in events that draw attention to the needs of people living with the illness. Aside
from helping the larger MS community, being an advocate can help promote the needs of caregivers and help you connect with additional sources of support. Contact your local MS Society in South Africa, ask about membership criteria and join a group of people with the same objectives and challenges.

Keep communicating

Effective communication may be the most important aspect of any caregiver relationship. By talking often and listening to each other, you can work out any difficulties that may arise. Be patient and open to hearing each other's needs.

Ask for help

When friends and neighbours ask what they can do to help, tell them. Do not pass up offers of help of a misguided sense that you must do it all. Remember that people feel good when they know they can help a friend. No doubt, the people who care about you see your devotion to your loved one and want to help you have a break. And they do not expect anything in return but heartfelt thanks.

Look after yourself

Caregivers are so busy taking care of their loved one that they often neglect their own health and well- being. Many caregivers even feel guilty about any time and attention they devote to their own needs. But no one can be expected to devote all their energy and time to someone else. Each of us deserves time to meet our own physical, emotional, and social needs. Ignoring your own needs can lead to physical and emotional exhaustion, which can cause health problems and lead to resentment in your relationship with your loved one. Make sure you take time for yourself because your health and well-being are just as important.

Caregiver resources

The following books may be of help to caregivers:

• The Comfort of Home, Multiple Sclerosis Edition: An Illustrated Step-by-Step Guide for Caregivers by Maria Meyer with Paula Der
• Love, Honor, & Value: A Family Caregiver Speaks Out about the Choices & Challenges of Caregiving by Suzanne Geffen Mintz
• Mainstay: For the Well Spouse of the Chronically Ill by Maggie Strong
• Multiple Sclerosis: A Guide for Families by Rosalind C. Kalb, PhD

Emotional aspects - Partner

Face the future together

MS changes the lives of your family, your friends, and your partner without their consent. They too can have many concerns for the future. Everyone has their own problems, but that does not mean that you must solve them on your own. People are brought closer together precisely because they learn to confront their problems together. It is a good thing for both partners to

be able to listen to one another's emotions and needs. Talking removes misunderstandings and often prevents them in the first place. But there is also nothing strange about not being able to solve a problem together. You can look for professional help (social worker, psychologist). Sometimes people find it difficult to surmount the hurdle facing them when they go to look for this sort of help, a hurdle caused by fear or embarrassment: "Someone like that can't solve your problems for you". And that is, of course, true, but an expert can help to improve communication between people, can clarify the problem and thus help you to break out of the negative spiral.

Changing the roles

"You don't get MS on your own" is something that is often said. In other words, the people around you are also affected - your partner, your friends, members of your family. And they can be affected to such an extent that they suffer the same emotional reactions as you.

Once your partner has heard that you have MS, he/she will go through a process of coming to terms with the news, a process that includes shock, fear, anger and so on. Such changes in both your lives can be the cause of extra tension. Of course, that does not mean that you will only get problems. It is also possible that MS will bring you closer together and will help you to value daily life even more.

The closer your partner is to you the greater the changes in his or her life will be. Your partner can feel helpless because the one he/she loves now has unpredictable physical complaints that make the future uncertain. You are used to doing certain tasks while your partner does others. MS will change the way you divide up those tasks. Your partner will have to take over some of the things you are used to doing. You will become more dependent on your partner, and it will take time to get used to this new balance. However, if you begin to feel that the burden on your partner is too great or you are becoming too dependent on your partner, then it is time to ask for professional help from social workers or district nurses. This can never be done too early, since people often tend to postpone asking for help from external professionals as long as possible, until the problems have gotten out of hand.

Anger

Your partner may get angry because he/she thinks it is unfair that you should have to suffer. Your partner can sometimes be angry with you, for instance because your illness means that he/she has too much to do.

Or because he or she feels "tied down" ("I'm throwing my life away by staying with you").

And because you have troubles of your own your partner will often swallow the anger. But that does not make it disappear and can even lead to sudden outbursts of rage.

That is why it is important to discuss your feelings; do not keep back problems from your partner or other people close to you.

Your partner tries to spare your feelings

It can also happen that you get the feeling that your partner no longer takes you seriously, is trying to spare your feelings and therefore attempts to avoid certain (painful) subjects. This can also cause you to drift apart. However, talking to one another on a regular basis prevents many problems.

Sexuality

Feelings of mutual self-sacrifice can lead to sexual problems. The female partner with MS can think: "He is so good to me, he has already done so much for me, I don't want to disappoint him sexually". This can lead to problems on the sexual front because the woman is no longer making love based on her own needs, resulting for instance, in pain during intercourse. On the other hand, your partner may find it almost impossible to combine the roles of nurse and lover.

But there are plenty of people who find the right balance in their relationships. They communicate honestly and openly so that MS does not prevent them expressing their feelings and love for each other.

Feelings of guilt

Your partner can start feeling guilty because he/she still finds pleasure in things that you can no longer do or because he/she is in good health while you are not. And you yourself can start feeling guilty towards your partner because you have become a "millstone around his/her neck". Here again, it helps to talk to one another about your feelings.

Malicious thoughts

Your partner can go through phases of malicious thoughts ("I wish I had never met you" or "I wish you would divorce me, then at least I would be free"). It is quite normal that your partner might get these thoughts. They occur in everyone involved in this sort of situation. These feelings will automatically diminish in the course of time once you and your partner find a new balance in your relationship.

Emotional aspects - Children

Don't let MS hold you back

If you would like to have children do not let MS hold you back. MS does not affect fertility and nowadays there are many women with MS who have one or more children.

Your relationship

If you already have children, there is no reason why MS should stand in the way of a loving relationship with them. However, it is not difficult to imagine that children in that sort of situation also have feelings of anger, sadness, fear, and guilt. Anger because one of the partners is changing and that requires adaptation. Sadness on the part of the child is often tied up with thoughts like "I don't want people I love to have problems" or with the fact that one of the parents can no longer do things that used to be a normal part of life. Children's guilt feelings can often be tied to the idea that they are in some way to blame for the illness of a father or mother.

Young children have a strong need to know if Daddy or Mummy is going to die (fear of being abandoned). They are afraid of being left to cope with their problems alone or are scared that they will get MS. Clear answers are needed to children's direct questions. There is literature available about MS which is specially designed to explain to children at their level what Mummy's or Daddy's illness means. Do not hide your illness from your children: they function better in an atmosphere where discussion is possible, and their questions are answered.

The changed situation within the family can mean that your children acquire new responsibilities, which is not necessarily a dreadful thing. It can mean things like doing the shopping more often or walking the dog. In consequence, children become independent earlier and learn to accept other people with a handicap more easily. But if the situation threatens to grow into a takeover of all sorts of parental tasks, you should seek outside help, for instance from social workers, to ensure that children are allowed as normal a childhood as possible.

Emotional aspects - Friends/Social Contacts/Colleagues

Friends

When the time comes for you to tell friends that you have MS, keep in mind the fact that people often do not know how to deal with it. They may react negatively because they are shocked or feel fear. They often need time to come to terms with the news, which is why initially they may not be able to give you the support you need. They may withdraw completely, and that can be very painful. Friends who do provide support take your feelings as their guideline. For instance, you feel the need for a willing ear and your friend is prepared just to be there for you.

Social contacts

You may find that some people unexpectedly increase in importance for you. These will be the people who take your emotions seriously and do not take your responsibilities away from you.
Your appreciation of the way they act can change the relationship between you. The strengthening of several contacts can be a valuable experience for you. And you can get to know new people.
They cannot compare you to the way you used to be and that can make you feel good. You can seek support from people in your immediate environment, as well as from other people with MS.

Colleagues

The bond between you and your colleagues will determine the time when you tell them that you have MS. It may be advisable to leave it until such a time as you can talk easily about it yourself. Or until the time that they start to notice that something is wrong. You also have no obligation to tell your employer immediately.

Living with multiple sclerosis

The first question most people have when they receive a multiple sclerosis diagnosis is, "What can I expect?" That question is not always easy to answer, because the course of disease is often unpredictable. A particularly difficult flare-up may have you genuinely concerned that your disease is progressing rapidly, but then your symptoms disappear and do not return for years. Or you may have a mild flare-up but are left with residual disability in the affected area. This unpredictability is often the most challenging aspect of living with multiple sclerosis. However, there are several things you can do to help you take greater control in managing MS.

Work with your healthcare team

Once you have a multiple sclerosis diagnosis, start putting together a healthcare team with which you are comfortable. Then collaborate closely with your physicians to manage your symptoms and underlying disease. Having a good primary care physician, a neurologist, and an ophthalmologist, each experienced in treating people with multiple sclerosis, can go a long way in helping you manage MS over the long term.

Take advantage of help that is available

If you have multiple sclerosis, you are not alone. In fact, MS is the most common neurological disease in the world. Many advocacy organizations and support groups are available that can help you move forward living with MS. Physical therapy, occupational therapy and an abundance of modern assistive devices are available to help you deal with the physical challenges of the disease as they arise. Social workers and counsellors can also help you address the emotional, financial, and employment challenges you may face. You do not have to go it alone with MS. Help is available - take advantage of as much as you can.

Stay positive

Living with multiple sclerosis can be challenging. No question about it. But it is not fatal. Many people even say the diagnosis comes as a relief because it means they do not have cancer and they are not going crazy. With disease-modifying drugs, such as IM Ifnb-1a x1 per week, you can reduce the number of flare-ups and delay the progression of disability. Meanwhile, researchers are hard at work searching for more effective treatments and for a cure. There is a lot to be hopeful about, so hang in there.

Can you have a child if you have MS?

We have already seen that if there is a PwMS in the family the other family members have a slightly higher risk of contracting the disease. A female PwMS therefore runs a slightly higher risk that her child may also get MS at a later stage than a woman without MS would. Most people find that the risk of MS is so slight that there is no reason to give up the idea of having children.

The second question involves the effect of pregnancy on MS. Numerous studies have shown that during pregnancy the MS is, on average, less active. The relapses occur less frequently. But in the first three months after birth, they can become more frequent, which cancels out any benefit gained during pregnancy. But these facts do not constitute a reason for not becoming pregnant if you have MS.

A different question which you should consider (together with your partner) is bringing up your child with the additional challenges MS can impose, such as times when the illness causes you to feel less well or more tired, or if the MS becomes more progressive in the future. This is a much trickier question to answer, and it depends on your personal circumstances, your personality, and your experience. But for most people MS has not been a reason for giving up the idea of children, and if the people around you (partner, family) are prepared to cooperate, there is no reason you should not be able to have a normal family life.

Tips for getting the most from your visit to the neurologist.

• Write down your symptoms, noting when they occurred and how long they lasted. Be as specific as possible.
• Bring a list of all medications and supplements you are currently taking, including the dose and the reason you are taking them.
• Make a list of any questions you have. Sometimes we forget the questions we intended to ask when we get into the doctor’s office.
• Make notes. In addition to helping, you remember what you were told, reviewing the notes later can help spur additional questions.
• Call back if you have more questions. The nurse may need to take a message and return your call in a day or two, but do not let this stop you from following up if you need more information.

Who are the professionals who work with MS patients?

Depending on your symptoms, the way your MS progresses and the extent of your physical disability, you may be confronted with a wide range of medical professionals. As far as doctors are concerned, the person you see most frequently is your GP who will refer you to a neurologist.

• If you suffer from blurred or double vision or inflammation of the optic nerve, you may have to consult an ophthalmologist.
• For bladder problems you may consult the urologist. Men with MS, who have sexual problems, may also consult a urologist. Female MS patients with sexual problems are often referred to a gynaecologist. And a sexologist may also be called in to help both male and female patients learn how to cope with the changes in their sexual capacities.
• People with progressive MS are often sent to a rehabilitation specialist. If you have difficulty walking, you may need various appliances to remain mobile; for longer distances you may require a wheelchair. And of course there can be other problems, apart from those associated with walking. Here too, the rehabilitation specialist can provide advice.

Many rehabilitation specialists work at rehabilitation centers where there are facilities for you to train your own body to work. A rehabilitation specialist often works in a team with other professional helpers such as the occupational therapist and/or physiotherapist.

• It is the task of the occupational therapist to analyze all our daily household functions and provide advice on carrying them out using various sorts of equipment. The occupational therapist can also give advice on how to remodel your place of work and how to better your professional activities in relation to your condition. A significant role is played by the physiotherapist in helping with exercises designed to improve your day-to-day functioning, e.g., exercises for balance, walking or standing. A Biokineticist can also aid in improving your strength and balance as much as possible.
• In cases of clearly progressive MS, you may encounter problems with speech or swallowing. This is when one would perhaps find that breathing is no longer as automatic as it used to be. This is the area in which a speech therapist would have to be consulted. This helper also tries to improve the way you function by providing advice and exercises.
• You may occasionally require the help of a psychologist or psychiatrist - for example to help you with loss of memory. At various times during the course of your chronic condition, you may feel more or less depressed. For example, the period immediately following the diagnosis of MS is exceedingly difficult. You must come to terms with the diagnosis. To prevent your day-to-day life being too severely affected by feelings of depression you may well be advised to seek help from a psychologist or psychiatrist at an early stage.
• Social problems can arise because of MS - at work, with social security, with your partner, with the children, your parents or with those immediately around you. Sometimes it is necessary to call on a social worker to help you through the maze of regulations and provisions. When physical handicaps occur, you may need the assistance of a home help.