Playing for Time

For my niece KG, my friend VP, et al

We walk among people every day whose physical lives are defined and confined by invisible illnesses of the immune system. They know it, we don’t. They feel it, we can’t. Lacking a cure or effective treatment protocols for something called fibromyalgia, for instance, doctors have traditionally preferred to suss out other “causes” they know how to prescribe for. As research is turning up clues and avenues for possible treatment, the wheelbarrow load of symptoms that’s been newly-labeled as ME/CFS (myalgic encephalomyelitis chronic fatigue syndrome) may finally be coming into favor enough for medical professionals to seriously address it. That would be nice. My friends-and-family circle is dotted with immunocompromised individuals who live quietly inside bodies full of pain and perpetual exhaustion, so an intentional focus by the medical community would be as welcome as rain… says the girl who loves rain. A truly frustrating part of autoimmune disorders is their capricious nature – they flit around in the body, inflicting bits of torture here and there, feinting, withdrawing, teasing, tormenting. And then they all take a powder somewhere and HEY! A GOOD DAY!! Blessed be if it happens on a day when you really, really, really want to do something.

Some autoimmune disorders eventually leave markers that become visible to the casual observer, but some don’t, staying hidden at cell level, disrupting the daily peace of the carrier at will. Talking to someone who’s never experienced anything like it is generally not very helpful. And complaining just… well, we all know where that gets us in life. We humans believe what we can see, touch, taste, smell, and hear. We don’t do well with “phantom” illnesses, in ourselves or others – “You’re up walking around, taking nourishment, so show us the medical report or you’re a lazy piker.” America has little patience with those who can’t or won’t tote that barge, lift that bale. Who ever said life was fair, right?

Someone you know has an illness you can’t see, so a few things…

1) That person is fighting every day just to be able to participate in life

2) It likely never occurred to them that one day they’d wake up sick and never get better

3) Trying to be stronger than one feels is exhausting – be patient

As for the curious claim that people with invisible illnesses are “faking it,” what can we even say? What would they gain from that? Being in pain, unable to move freely, medicated, in and out of doctors’ offices, spending thousands on medical expenses, experiencing the gamut of emotions that accompanies chronic illness, missing most of what people call life because they can’t “get there.” Easy to fake and totally cool, right? We all wish we could find a sweet deal like that and coast.

Everyone you know, every human you’ll never know, deserves personal dignity and at least a pinch of understanding, so if empathy isn’t really your thing, at least give them that much. Leave them that tiny place inside that believes they’ll be better someday. And never forget that they miss their old carefree smiling selves, too.

This has been a PUBLIC SERVICE ANNOUNCEMENT on behalf of hurting people everywhere. Thank you for your support.