Human beings experience stress as a response to change. While everyone has stress, individuals and families dealing with hemophilia often have more stress than other people do. Chronic illnesses like hemophilia may require people to make changes in many areas of their lives.

Hemophilia has the potential to create stress in some or all of these ways:

1. Having hemophilia, or caring for a child with hemophilia, is itself a fixed, ongoing stress. Hemophilia is a lifelong disease.

2. Financial stress may result from the expenses connected with the illness. Factor, doctor's visits, emergency room visits, etc. can drain finances.

3. Employment decisions can be impacted by the necessity of adequate healthcare insurance to cover the hemophilia patient. This can be a stressful concern for parents and later for the child himself when he enters the workforce.

4. The effects of the disease and one's perception of his or her own body can affect self-esteem, creating emotional stress.

5. The pain, discomfort and risks that accompany hemophilia can be physically and emotionally stressful. Bleeding in the joints can cause pain. Bruises are common. Trauma to the head, neck or abdomen is always potentially serious and requires a trip to the emergency room.

6. Hemophilia can cause some social stress. Patients may need to refrain from contact sports or certain other high-risk activities with family or friends. This can contribute to a sense of being "different."

7. Fear is stressful. Patients may fear pain or discomfort. They may fear the bleeding that can occur with dental work. They may fear accidents or getting an illness from hemophilia treatment products, or may fear various other things.

8. Hemophilia patients may experience depression, which is sometimes related to the stress of a chronic illness. Healthy people may not understand that depression is related to the disease. This, in turn, can cause relationship stress.

9. Hemophilia can put stress on marriages and families. Family members may become overprotective of the patient. They may also feel angry or depressed about the diagnosis of hemophilia, or even guilty for passing on the hemophilia gene.

It is very important for hemophilia patients and parents to learn how to cope with stress. Young patients must understand the importance of taking good care of themselves. Parents can learn ways to reduce family stress and teach these methods to their children. Good nutrition, sufficient sleep and regular exercise all help buffer hemophilia patients and parents against stress.

Experts say that the key to managing stress is how we think about the things that cause us stress. Patients and parents are encouraged to distinguish between things that can and cannot be changed. When things can't be changed, thinking must change. Many people have learned to combat stress by mastering relaxation methods. Books and tapes, support groups, counseling, exercise, humor, breathing techniques and sometimes medication can help. In addition, families can make choices that help reduce some of life's routine stresses. This starts by identifying stressors and then taking steps to reduce as much stress as possible.

References

First published September 1, 2000
Last updated December 2, 2002
Copyright © 2000 Accordant Health Services, Inc. All Rights Reserved.

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