In my clinical practice of eighteen years, I have seen many patients with chronic illness. They come to see a therapist because often doctors say their symptoms are in their heads and caused by stress, sometimes the patient feels that he/she has caused the illness because of negative thinking or repressed emotional material. I saw one woman in her 30's who thought her breast cancer was caused by her repressed rage at her parents, another middle aged woman thought she deserved her HIV diagnosis because she had broken up with her boyfriend and this was God's punishment. My work with persons who have chronic illness is to first attempt to lift the BLAME and to welcome them into a relationship where the story of their illness is what is crucial.

Each person comes with symptoms that usually are baffling, uncontrollable, unpredictable, ongoing in a relentless way and more often than not, disappear for a period of time and then return. Paul Donoghue Ph.D. in his book, Sick and Tired of Feeling Sick and Tired, refers to this way of living as a baseline of unwellness that is interrupted by periods of exacerbation and remission, relapse, and remission. It is a yo-yo effect from health and well being to pain and discomfort that is exhausting and disheartening. I am not a medical doctor with knowledge of the current treatment for chronic illness, although I wish I had a magic wand to relieve bouts of pain and fatigue. My job is to listen and pay attention to each unique story of struggle. For each patient is a warrior on a path of discovery and challenge; I am there to share that experience in any way that I can. I encourage my patients to seek out the doctors who have time to work with them on their symptoms, who actually sit down and answer questions, who read charts, who answer phone calls. The hardest part is becoming your own advocate when you're sick...when you haven't slept, when you're in pain, when you're confused and disoriented. I didn't mention scared and anxious.

Here are a few suggestions-if you have a computer go to it and research your symptoms. The first step is to have a name for what you have. Often patients have never heard of Chronic Fatigue Immune Dysfunction Syndrome(CFIDS), or Fibromyalgia(FM), or Irritable Bowel Syndrome(IBS), to name a few. Doctors often don't ask enough questions or are not knowledgeable about your particular illness to provide you with a name for it. I also want to mention Hepatitis C, which is another illness that is hard to find support and experimental treatment. If you have no computer access then try your local library, two references that are very good are: Meeting the Challenge: Living With Chronic Illness by Audrey Kron M.A. and Sick And Tired Of Feeling Sick and Tired by Paul Donoghue PhD and Mary Siegel, PhD. Both have a comprehensive appendix with references, support groups, and associations. My next suggestion is to find a support group associated with your illness which may be a challenge but be persistent because they are out there! I have found that isolation can be very debilitating and sharing with others who have experienced similar symptoms and frustrations can be comforting and educational. I want to end this essay with a strong recommendation to read one of my favorite books for the soul and spirit, written by a doctor with a chronic illness, Kitchen Table Wisdom: Stories That Heal by Rachel Naomi Remen M.D. Most important, don't give up, your symptoms are real! If your doctor responds with less than serious attention and your family and friends have heard it all before and you feel a burden. Join the club of those with chronic illness.

Listed below are the books suggested by Dr. Sherman and several books mentioned in Donoghue and Siegels' book on Living with Invisible Chronic Illness which may act as a needed stepping stone to better coping skills, better communication with doctors regarding your symptoms, lessen blame, and most importantly, connect you with others you have an invisible illness such as yours.

Aladjem, H. In Search of the Sun: How to Cope with Chronic Illness. New York: Macmillan, 1988.
Bender, S.D., and Kelleher, K. A Positive Program to Pain Control. Tucson: Body Press, 1986.
Donoghue, P.J. and Siegel, M.E. Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness. New York: Norton and Co., 1992.
Kron, A. Meeting the Challenge: Living with Chronic Illness. ISBN:#0-9633877-1-5, 1996.
Pitzele, S. K. We Are Not Alone; Learning to Live with Chronic Illness. New York: Workman, l987.
Register, C. Living with Chronic Illness: Days of Patience and Passion. New York: Free Press, 1987.
Remen, R.N. Kitchen Table Wisdom: Stories That Heal. New York: The Berkley, 1994.

Dr. Sherman is a psychotherapist in practice in Hermosa Beach. She is a member of the Independent Psychotherapy Network.

back to article of the month