art · chronic pain/fibromyalgia · food · friends · gilmore girls · gym · marriage

When Everyone’s a Critic (Doctor)

I survived the Seders. Well, barely. I haven’t had the routine exercise my fibromyalgia needs in order to allow my body to run smoothly. My brain is hazy from the exhaustion of eating too much, sitting too much and exercising too little. I’ve either adjusted to LA time or I’m waking up in the afternoons NY time.

Between trying to do some writing without my trusty speaking software and ergonomic desktop setup and stretching throughout the Seders, the effects of fibromyalgia on my body have become obvious to those around me and the relatives have felt the need to make comments on my fibromyalgia. Usually, the fibromyalgia is silent and insidious but when I’m forced to do downward dog during Ma Nishtana to help relieve the pain, all eyes stray my way. This visual has inevitably led every other relative to act as on-call doctor.

Everyone wants to help. “You should try a naturopath. You should try accupuncture. You should try this homeopathic remedy. Try energy healing?” And the most insensitive have repeatedly suggested that fibromyalgia “is all in my head” even after I’ve pointed out that according to many doctors, it is in my central nervous system. It’s hard for people who have suffered a toothache or backache now and again to imagine that one could wake up one day to find that a toothache or backache has spread all over the body to make every day a painful one.

After two years of coping with fibromyalgia, I should have heard it all. Seen it all, heard it all and just about tried everything under the sun. Nothing’s changed except that though my close friends and I have learned to cope with my fibromyalgia, the less seasoned veterans have not. My close friends seat me near the nearest exit at the table so I can stretch out during meals. My sister sighs in frustration when she sees me “waste energy” trying to perform a repetitive function I should have asked someone else to do for me. “Conserve your energy!” she bleats in annoyance. My husband coos sympathetically when I announce I’m in pain (knowing it means I’m announcing I’m in more pain than usual). But everyone else copes by offering often hurtful advice.

After hours of ignoring comments about my fibromyalgia, I finally broke down at the seder. I offered one relative a glimpse into the fibromyalgia section of the nutritional healing book that another relative had brought to show me at the seder. The relative begged off, refusing to read the passage about my mysterious illness, once again insinuating that I was exaggerating something that was all in my head.

“You wouldn’t tell cancer patients that they don’t have cancer because you can’t see it. Just people you can’t understand what’s wrong with me doesn’t mean that there isn’t something wrong.” And my sister chimed in later that most sane people don’t try to play doctor with these cancer patients unless they have an MD. Perhaps, the online Pain Exhibit, featured in the NY Times this week in “Pain as an Art Form”, will give everyone, suffers and skeptics alike, some food for thought. Perhaps the first step to understanding the pain of others is accepting it.

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