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RECOVERY FROM A CHRONIC ILLNESS

by Daryl Holtz Isenberg, Ph.D.

During the past 20 years, millions of people have learned to handle chronic health problems by attending self-help groups. While groups for serious and addictive problems grew like mushrooms in the rain, fewer groups developed for people with vague, undiagnosed or mysterious symptoms. Now, a critical mass of people in self-help groups has brought attention to some of these conditions for chronic fatigue, environmental illness, Scleraderma, Sarcoidosis, and Lupus.

Many people still don't know how to discuss with physicians their cluster of symptoms when medical treatments have not provided a solution. I have had to learn to handle asthma and fatigue by attending more than 15 self-help groups. After my divorce, I had repeated bouts of bronchitis. I was raising two children while I was in graduate school, and spent years exhausted by a variety of allergies and a roller-coaster cycle of asthma and infection. Recovering emotional well-being became a space odyssey.

Uncertain about what was wrong with me, I was not aware of the connection between causes and symptoms. I didn't know that everyone didn't use a half a box of Kleenex a week and arrange their lives to begin later in the day.When I had prolonged bronchial infections my doctor prescribed bronchodilators, albuterol, and steroid inhalers. Medical professionals never alerted me to the long term consequences of asthma, and my condition has escalated over the years. Finally, I lost faith in traditional and nontraditional medicine to guide me through these frequent, asthma attacks. I chose not to commit to a course of treatment and health regimen that I could neither understand nor believe in.

My asthma attacks were not emergencies, yet I suffered constricted airways,fatigue and depression. My own low-grade crisis was diverted when my cousin was diagnosed with cancer. Wanting to find help for her, discovered self-help groups. Make Today Count offered the sensitive, uplifting help I had been looking for. I learned how to navigate in medical space through group member's direct experience about how to make medical choices and decisions.

Since my own intermittent health episodes aren't classified as serious illness, I did not make the connection that a self-help group might help me cope with my asthma. Drawn to study and work with self-help groups, did attend meetings of more than 15 self-help organizations over the next decade. All the groups taught that people who take charge of their illness develop better coping mechanisms, including healthier lifestyles.

Group members helped each other learn how to cut up big pills so they were easier to swallow and to use Lamaze breathing during a spinal tap. Whelped each other challenge the stigma of epilepsy, cancer, and AIDS. Most importantly, self-help group members share a belief system in the course of treatment and health regimen you follow. That was key to my recovery.

I realized from AA that self-help groups fill in the gaps following or between medical treatment, when the health professionals and institutions are not central in the picture. That's the time when people recover.

Our cancer and mental health "survivors" and our friends "living with AIDS" help one another develop healthy lifestyles and healing relationships. We found that it was important to work together to redefine our relationships with professionals, helping them recognize we want to go beyond illness in our recovery.

A few years ago, when filling a prescription, the pharmacist asked if I had a chronic illness. I replied, "No, I only have asthma." He responded, "Asthma*is* a chronic illness!" Shocked at first, soon after I began my search for support from other asthma patients and an objective self-care system that would help me recognize an asthma crisis.

5/28/98

Daryl Holtz Isenberg, PhD discovered self-help groups in 1973 when a family member had cancer. Isenberg received her doctorate in 1981 from Northwestern University, Evanston, Illinois. She was the Executive Director of the Evanston-based Self-help Center from 1985 -1995. Isenberg is founder and president of the Illinois Self-help Coalition. She can be reached by: Phone 312/481-8837, FAX 312/481-8903.

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