I Thought They Were Fatigued!

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The Annual Invisible Diseases Run, Walk, Bike, or Swim

Is the title offensive to you? It should be, I guess. What handicapped person could engage in such activities? Apparently, our support groups think we can.

I realize that event promoters call up various support groups and offer to handle all the minutia of the up-coming event for very little money and, to “sweeten,” the pot, promise to share the proceeds with the support group. That's one reason these things get off the ground (so to speak) in the first place.  Over the years, I've taken those calls myself.

In support groups where members are too ill to do the event themselves, the promoters do a change-up and suggest that the members will only have to sign up other people to actually do the exercise.  But it's  always advertised as something like the CFS or FM “Run for a Cure.”  The civilians (normal folks) would never know the difference.

Support group all over America, Canada, the UK, and Europe are now gearing up for the official Awareness Month for CFS and of Fibromyalgia in May .

I'm not sure what kind of event I would schedule in order to garner funds.  But I do know that I would not schedule a bike ride, a walk, a run, or a swim, in fact nothing to do with exercise whether it be performed by that syndrome's patients or whether it be performed by surrogates as a way of fund-raising.

I've been diagnosed with Fibromyalgia since '91, CFS since '97, and Lyme since 2000.  I managed a 300-person support group for 6 years or more and I've counseled FM, CFS and Lyme patients right up to now.   I mention this again as evidence that I might have some experience with the real world outside of my bubble.

And in all these years, I've never heard of any of “my” patients who was able to do the walk, ride, run or swim.

But more importantly, I've heard hundreds of comments that generally start with “I thought they were suppose to be fatigued?” followed by the snicker, scoff, or other derisive noise.  It hardly matters that, for instance, surrogates are being used because the damage has already been done.  More “civilians” think we're crazy, malingerers, and/or outright frauds.  And that bad press hampers us for years afterward.

Please, please, either call these events something like “The Surrogate walk/bike/run, or swim” so everybody knows right up front what's going on or, better yet,  just don't have exercise be part of fund-raising!