What is CIDP?

 

CIDP does not always have these patterns of being 'better' or 'worse'; sometimes symptoms can gradually increase over a period of many years and it may be difficult to identify 'better' or 'worse' times. It is impossible to predict with certainty how CIDP is going to affect an individual in the future. The pattern of relapses and remissions varies greatly from person to person. A period of relapse can be very disturbing but many people make a good recovery. Coping with this uncertainty is one of the most difficult aspects of 'living with CIDP'. You should try to accept this variability without getting too worried about it.

You and your Family and friends

A diagnosis such as CIDP of a chronic condition with an uncertain prognosis may well throw a strain on family and other relationships. You may find it difficult to accept help when you need it or your family and friends may feel that they cannot give help or become overprotective towards you. It is difficult to carry on family life as if nothing has happened. Everyone concerned may have to take on new roles. If you and your family and friends are able to speak openly and honestly with each other you will probably find that you are able to help each other through difficult times with the result that the bonds are strengthened.

Instinctively children are aware that something is wrong and that you are worried. It is important that their questions are answered as and when they occur. Older children can become surprisingly mature and a source of strength. Trying to keep your problems to yourself will not spare them any anxiety. Many chronic illnesses can have a major effect on your sex life and it is important to remember that you are not alone in this. You and your partner should talk to your doctor about it. Referral to an experienced counsellor may be a great help. Don't give up.

You and Your Doctor

It is important to build a good relationship with your doctors, both GP and specialist. Because of the rarity of the illness, many doctors will not have encountered it before. The symptoms are difficult to describe and may not be taken seriously at first. Each case of CIDP is different, and relapses, if they occur, may bring new symptoms and problems. Because of the variability in severity and progression of the disease, the doctor will not be able to give you a definite prognosis. Although there is not one single overall treatment for CIDP, there is much that your doctor can do to help. Each person responds in different ways to different treatments. A period of experimentation with different treatment regimes is likely to be necessary in order to discover the regime that is most appropriate for you.

Attitude to Life

It is not just our physical condition which undermines our health. Our emotional and psychological attitudes play a big part in keeping us healthy.