A diagnosis is burden enough without being burdened by secrecy and shame.” Jane Pauley
DAY 6: I refuse to be embarrassed by this illness anymore and I refuse to walk away from this illness in shame.
This chronic, ongoing, relentless illness has caused me much embarrassment. Most people understand the kind of illness when you are not well for a short period of time and you require rest and drugs or even surgery. They even understand the kind of illness that is progressively debilitating. However, even though I was basically bed-ridden for the first three years, I now generally function in the mornings in between setbacks. Occasionally, I make an even bigger step forward and I begin to socialize a little even though I must often cancel at the last minute. The problem is that I do not require a cast or even a cane; I have no bumps or bruises to look ill. Therefore, I become embarrassed when I admit that I am still ill since I know I will receive a flattering comment, “You look so well.” I even feel self-conscious that I may be at a restaurant or a concert and I feel like the acquaintance who sees me must be thinking, “How sick can she be?” But mostly, I am embarrassed because I am still ill after twelve years. Who is sick for twelve years??!!! Unfortunately, thousands of people suffering from Chronic Fatigue Syndrome and Fibromyalgia are sick for decades. Too often there are magazine articles read by the general public that attribute much of this illness to our Type A personality or a result of suppressing some deep emotions. Therefore, I am embarrassed to say what illness I have. I am embarrassed because most people think that my only symptom is fatigue and they often respond. “Oh I know what you mean. I’m so tired myself”. I am embarrassed because the illness sounds so manageable: ” You probably just need some rest, a little fresh air, some regular exercise and you will feel much better.” I am embarrassed because I continually meet people who tell me that they too have Fibromyalgia/ Chronic Fatigue Syndrome but they are working full time and generally maintain a “normal life”. I am embarrassed because too many people are being diagnosed with these illnesses since it is a catch all for a multitude of symptoms that can’t otherwise be diagnosed. That makes it very difficult for those of us who really have the whole gamut of symptoms. I’ve been thinking a lot lately how I often downplay the debilitating effects of my illness and how I quickly change the topic due to my embarrassment. And yet as I consider even the extent of my isolation and aloneness, I doubt whether many people could cope with just that one aspect of the illness let alone the symptoms that lead to that state. As part of my steps to optimum health, I refuse to be embarrassed any longer since I do have a disease that Timothy Kenny describes well in his book, Living With Chronic Fatigue: “We have a serious disorder that disrupts the immune system, degenerates muscle tissue, destroys normal metabolism, robs our memory and thinking abilities, and causes brain damage, among other things. This is real – it is not imagined.” I believe that with my doctor’s new treatment protocol for me I have a terrific opportunity to become well. However, I believe that shame does not help the healing process and I also refuse to leave behind this illness in shame and embarrassment.
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