Your Feelings

Being ill can stir up a number of feelings that have not been experienced before or quite so intensely. For example, you may feel frustrated, angry, anxious, fearful, vulnerable, ashamed of being ill, a sense of loss and grief, and you may even have trouble dealing with the fact that you are ill. Feelings of uncertainty also occur quite frequently during a time when so much change is being experienced. You may feel tearful at times, depending on what sort of personality you have and how you express your feelings.

All these feelings are to be expected and are part of the normal process of dealing with, and adapting to, a major change in one's life. Different people deal with change in different ways, but for many it takes time to come to terms with change. It may take weeks, months or even years to completely adapt, depending on how many and what types of changes have taken place. However, it is important to remember that it is OK to take this time. Just as it takes time to get over the loss of a loved one, so it takes time to get over the loss of a way of life or good health. Many feelings experienced in both these circumstances are similar. Therefore, the ongoing support and understanding from family and friends can be of great help during this distressing time. It is useful to accept this support, even if you are an independent sort of person.

It is also important to remember that not just the person who is ill feels the loss. What happens to any individual affects those around them. It is therefore important, if possible, to try and talk to each other about what's happening. This can be helpful in many ways; for example, talking about feelings and experiences can help towards coping with them. It can help to avoid bottling up feelings that need to be worked through and then left behind. It can also help to prevent misunderstandings, and it can positively enhance feelings of support towards one another.

Unfortunately, one of the problems of having an uncommon and not well known illness is that family, friends and work colleagues may find it hard to understand what is happening to you - particularly if your symptoms are hidden and you 'look well'. So it is hoped that this booklet will be of use to your friends and relatives in coming to terms with your disease and how it affects you.

You may also find yourself repeating the same explanations over and over again! Sometimes people understand and sometimes they just don't; regardless of how often you remind them of the situation. This can be very hard to cope with at first and may leave you feeling isolated and frustrated. However, it is important to persevere and to develop and build friendships with those who do understand, even if it is only a little at first.

Sometimes people have difficulty coping with others who may be different in some kind of way or have any limitations. If the vasculitis has left you with limitations of any kind, you may well experience these attitudes in others. It is important to remember, however, that when people react towards you in this way it is they that may have a problem! You are still the same "you" that you were before, even if your body doesn't get you around as efficiently as before.

Now is the time to be inventive and creative - find other ways of doing things, find new hobbies or change how you take part in a particular interest. For example, if you played a musical instrument and this is now too difficult, try joining a choir, which may not be so physically demanding. Perhaps you have skills that you can share with others even if you can no longer physically do them yourself. Maybe there is something new you could explore?