There are many feelings associated with illness, some may not have been experienced before or may be more intense than previously encountered. These may include frustration, anger, anxiety, fear, vulnerability, and even being ashamed of being ill. Some patients feel a sense of loss and grief and may even deny the fact that they are ill. Feelings of uncertainty also occur quite frequently during a time when so much change is being experienced. Tearfulness at times, depending on personality, is common.

All these feelings are to be expected and are part of the normal process of dealing with and adapting to a major life changing episode. It often takes time to come to terms with change. This may be weeks, months or even years, depending on how many and what types of changes have taken place. 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. The ongoing support and understanding of family and friends can be of great help during such distressing times. It is often helpful to accept this support, even when this may be alien to the patient’s nature.

For vasculitis patients suffering from low mood or depression Manchester NHS has produced a booklet “Improve your mood: A guide to managing low mood and depression” which can be downloaded at: Low mood and depression.

It is also important to remember that not only you, the patient, feels the loss. Family and friends are also affected. Talking about feelings and difficulties can be helpful and may lead to coping better with the difficulties and prevent misunderstanding.

One of the problems of having a rare disease is that family, friends and work colleagues often find difficulty understanding what is happening – particularly if symptoms are hidden and the patient ‘looks well’.

As a patient with a rare disease you may find that the concept of your problem is not easy to grasp by other people. Perseverance, whilst frustrating, is helpful in raising awareness.

Where the vasculitis has resulted in limitations of any kind, you may experience negative attitudes in others. Patience and dialogue may be required.

Family and friends may find Caring for a family member with vasculitis helpful reading.

Many vasculitis patients comment that they have lost their “old life”. They may no longer be able to participate in their favourite activities or interests. The “new life” might not be what you would have envisaged but it is necessary to change and adapt. Taking up a different hobby or using skills previously acquired in a different endeavour can be helpful.