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Tuesday, March 16, 2010

Fibromyalgia Update

I think talking about my health to the NY Times, to the public on my blog has misled people to think that this topic is open for discussion and debate. I know many of you do not read my blog regularly. If you did, you'd know exactly how I feel on this topic and all of this entire post will seem redundant. Because I have been bombarded recently with so much email about it, I am creating this standard letter I can link to it when the same issues arise repeatedly.

When I make comments about my health in person or on the blog, it is nothing more than a "weather report." It's sunny, rainy or miserable. Like a weather report, my health changes from day to day, hour to hour. Rest assured, it is not a "cry for help." I am in good hands. But I do not discuss what I am or am not doing with regards to my treatment plan for my health problems with people who are not my very good, very cute doctors. I definitely don't discuss with with strangers.

In fact, I have found that because people who suffer from fibromyalgia and other chronic health problems are constantly, consistently, and chronically bombarded with "helpful suggestions, tips, information" from friends, from other sufferers, from strangers, from family members, from whoever has seen an ad for a particlar drug that week, I always advise people not to offer "any help" in this way, unless they've been directly, specifically and explicitly asked for it.

Indeed, I realize that this knee-jerk reaction is to show real concern and offer some type of support. But because it occurs so often in the life of someone with chronic health problems, at best, it becomes annoying, at worse, it can be condescending and intrusive. If you don't know or understand the health problem itself, if you can't even pronounce it, think twice before offering advice on it. Sure, you can ask questions but you must understand that you are not entitled to information so don't be surprised if the conversation ends very abruptly or awkwardly. Before even opening up this line of conversation, ask if the person feels comfortable discussing it with you. First and foremost, it is not the job of someone suffering from chronic health problems to educate every Tom, Dick and Harry about their particular diagnosis.

Instead of assuming that you might know what's best or what might work for a person suffering from a particular chronic illness.... The best help anyone can offer someone suffering a chronic health problem is always understanding and patience, especially by not joining the legion of people who constantly bombard those who suffer from chronic illnesses with 'help.'

"I'm sorry to hear that" goes a long way. "Have you tried this?" doesn't. But if you are in it for the long haul, if you'd really like to help this person on manage on a day-to-day basis, then it might be safe to add: (Assuming that the person who suffers from daily from the particular ailment itself and knows more about it and understands how they might need support on a day-to-day basis), "Is there any way, anything, I help you right now?"

People who are debilitated in a way that makes simple everyday tasks difficult could always use, quite literally, a hand.


To learn more about fibromyalgia:

"Patient Voices: Fibromyalgia" (NY Times feature)

National Fibromyalgia Association (The best, most up-to-date information about fibromyalgia)

"Air Hugs: Fibromyalgia and the Power of Touch" (My Chabad article)

144 post I wrote where I mentioned chronic pain/fibromyalgia
NOTE: As I reiterate numerous times whether I post about my health, please subvert any desire to respond to this post with a suggestion of "things I should try" for my health. I will ignore and delete any such comments whether they are posted here or emailed to me directly. If you are confused as to why, click on the "chronic pain/fibromyalgia" tag and read ALL of the previous posts.