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Chronic disease is a creeping and invasive intruder in many of our lives. I have had an inflammatory autoimmune disease since childhood. Sometimes people ask me how I've managed to live with it. The obvious answer isn't what most people want to hear because the truth is I have no idea how I do what I do or what forces me forward -- as this is the only life I have known. It's easy to make a list of what illness has done to me, and to all of us with chronic diseases. The challenge for me is to concentrate on what my peculiar life has done for me. I am fairly certain I would not be as patient, compassionate or as willing to work toward forgiveness in my relationships without my chronic disease as companion.
However, there is something that presses my impatience button--what I call the Toxic Ten. These are comments I've heard during the decades of attempting to live beyond disease. These remarks can come from well-meaning friends, strangers, acquaintances and colleagues. I began to collect them years ago. Because there were recurring themes I consolidated the "best" of them into my Bottom Ten List instead of David Letterman's nightly Top Ten.
On the 9th of April I was privileged to give the keynote address at the annual meeting of the Sjogren's Syndrome Foundation. Although I don't have Sjogren's I have familiarity with many of the same health challenges of those who do. Autoimmune diseases belong to a very large family and so understandably there is an overlap of symptoms. I mentioned a few of the Toxic Ten during my talk. The audience response made me think that I should share them on Chronic Healing as well. Obviously these are paraphrased and summarized from my years in the battle. I look forward to hearing your additions to the list.
THE TOXIC TEN:
- Are you still ill? How could that be--don't you have a good doctor?
- Quit going to see doctors. My psychic can cure you. You have blocked energy--that's the only thing that's wrong.
- Isn't autoimmune disease when the body attacks itself? If your body is attacking itself, so what's eating you?
- It seems you have chosen uncaring and selfish men in your life. That's got to be the reason you're not well.
- If you would only find another profession. Writing is too stressful.
- 90+% of those suffering with Lupus, etc. are women. If these are "women's diseases"--maybe it's all in your head.
- Are you sure you're really ill? You look simply wonderful.
- If you would only do [fill in the blank here for yourself, the list is endless].
- If you would only stop doing [again fill in for yourself].
- Happy people don't get chronic diseases.
When I've heard enough of these sorts of statements and am particularly cranky from a bad flare, my ability to feel compassion diminishes. Sometimes I would like to respond, "Actually, I've not eaten solid food for years. I drink only grasshopper juice and bay at the full moon. Want to try this life and see if you can do any better than I have?"
I don't say anything like that because in fact my life has forced me to value patience, compassion and even forgiveness. What I try to do is to take these encounters as an opportunity to educate people about these diseases and advocate for all of us who live on the planet of the chronically unwell. It has become a form of healing for me, and perhaps it might be for you as well.
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Go to: www.alidabrill.com for more information about Alida Brill and her latest book co-authored with her doctor, Michael Lockshin, M.D: Dancing at the River's Edge, A Patient and Her Doctor Negotiate Life with Chronic Illness (Schaffner Press, 2009 First Edition and 2010 paperback).
*For further information about Sjogren's Syndrome go to: http://www.sjogrens.org/
