[Originally published in Hospital for Special Surgery's HealthConnection: Your Good Health Newsletter, Volume 13, No.1, Summer 2004.]
Coping with the stress of everyday life is challenging enough. When these daily challenges are complicated by the impact of having a rheumatic disease, people experience a range of emotions. Initial shock and disbelief, anger, fear, sadness and isolation are common reactions.
At first, you may ask, "Why me?" as you face the unknowns of cause and cure. The unpredictability of what lies ahead is frightening. Your symptoms may have ups and downs with little or no warning. It is common for people to have anxiety and increased stress with so many unanswered questions.
You may need to consider changes in your lifestyle such as how, when, where and even if you continue working. You may need help with your role as a parent or partner. If you look well, family and friends may have trouble understanding how you are feeling and coping with your limitations. You may find yourself constantly trying to explain why some days bring pain, fatigue, and weakness, and others do not. All of these changes can impact tremendously on a person's emotional well being. A sense of loss and anger over 'the way things used to be' is a natural part of the grieving process.
Rheumatic disease also creates a new identity for a person. Associating yourself with labels like 'rheumatology patient' or 'chronically ill' can affect your self-esteem. The person you once were seems to be overshadowed by this new label, and in an effort to avoid dealing with the reactions of others, you may begin to isolate yourself. The following tips may be helpful in coping:
The emotional impact of rheumatic disease can depend on the severity of your illness, the level of support from your friends, family, and work environment, as well as your individual coping style, as you experience the many feelings that accompany chronic illness.
Angela Hunter, LMSW
Myositis Support Group Coordinator
Roberta Horton, ACSW, LCSW
Director, Department of Social Work Programs
Hospital for Special Surgery