Living With Chronic Fatigue Syndrome
This is a post I wrote for my “Living With Chronic Fatigue Syndrome” blog.
Here is a 30 second PSA on Chronic Fatigue Syndrome by the CDC…
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Finding Acceptance When You Have An Invisible Disease — by Catherine Morgan
When you have a chronic illness, acceptance of your diagnosis is key to your successful treatment. But for patients with CFS, acceptance doesn’t come easily, and that’s because they are surrounded by people that minimize their condition. Even though the CDC has said that Chronic Fatigue Syndrome is as debilitating as MS and Lupus, when you tell someone you have CFS, they either assume you are lazy or that you just need to get more sleep. Everyone from medical professionals to friends and family, have advice about what you should be doing or what you are doing wrong.
A patient with CFS ends up fighting not just the disease and it’s symptoms, but also the stigma of this disease. That might not sound like a big deal…But people with chronic illness, are generally much more successful at managing their disease, when they have support from the people in their life (friends, family, doctors). However, many patients with CFS don’t have the luxury of a strong support system (or any support system at all), due to the stigma surrounding this diagnosis. For this reason, the sooner this disease is legitimized by the medical professionals, the better it will be for those of us who suffer with it.
Tides are turning, and more research is being done…Where there was once no hope, there is now a glimmer.
Chronic Fatigue Syndrome: Fighting For Acceptance
Imagine if you knew you had an illness but other people didn’t believe you, including your doctor and your loved ones. Such is the experience of many people with Chronic Fatigue Syndrome (CFS). Because it is difficult to diagnose, those with CFS have to fight to have their condition recognized. A new study interviewing 14 people on the psychological experience of CFS finds two major obstacles to acceptance (Dickson, Knussen & Flowers, 2007):
1. Negotiating a diagnosis
Many found their symptoms were trivialized - they were even diagnosed with a different condition such as depression. Doctors were generally cynical about their condition and this prolonged distress at not receiving a diagnosis. A diagnosis meant legitimization.2. Negotiating CFS with a loved one
Other than the doctor, those with CFS faced the greatest problems with their loved ones. Partners appeared not to believe the condition was real. There was a perception that CFS was being used as an excuse to avoid planned activities. As a results those with CFS felt abandoned and isolated. — read full article
Also See:
My Statement To The Chronic Fatigue Advisory Board
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