I haven’t sent out a newsletter in over a year because after the intense amount of work & energy I put into the Kauai Art Tour I became very ill.
We live in a society that constantly tells us:
Go! Go! Go!
No Pain, No Gain!
Never Give Up!!!
But the tragedy of this is that for people like me with Myalgic Encephalomyelitis – a multi-systemic neuro-immune disorder – that very approach to life causes severe degeneration of our health. (If you can’t/don’t want to read this long post right now but wish to help, please scroll down toward the bottom to the “So what can I do?” section…)
So I haven’t been struck down by a new condition, but one that has apparently been the major cause of my deteriorating health for the past 19 years, to the befuddlement of doctors when I finally started seeing them a only few years ago (This is in addition to the Endometriosis I’ve dealt with for decades that some of you know I had surgery for last winter). My Myalgic Encephalomyelitis has progressed from mild to moderate over the years to now severe this past year. At this point, I just hope I never reach the extremely severe stage, like Whitney Dafoe. My heart goes out to him and his family who are racing against the clock to solve this mysterious illness.
I wanted to participate in a virtual protest (most of us are too ill to travel, never mind protesting all day) called #MillionsMissing this year to raise awareness of the illness and lack of funding. I went through the few digital photos I have from over the years (most were gone forever when my house was robbed in 2010) and was surprised and saddened to see the extent to which my life has been eroding away over the years. Because this illness affects memory, only upon going through these photos did I realize truly how long this has been going on.
Unfortunately it’s an illness that is almost completely neglected by governments and research grants around the world, so there are millions of people affected that have no idea what’s happening to them because their doctors aren’t educated about this illness in medical school (even though it’s had an official designation from the World Health Organization since the 60s!) and are written off as “hysterical” or hypochondriacs or simply in need of psychological therapy (I can’t believe it’s 2016 and we’re still stigmatizing the ill like it’s Victorian times).
Myalgic Encephalomyelitis affects the autonomic nervous system, the brain, and the immune system which in turn can affect so many other systems in the body. (It’s similar in some ways to Multiple Sclerosis but is often even more debilitating, affects at least twice as many people in the US, yet gets only 5% of the research funding that MS does). They suspect that it involves mitochondrial disfunction. But the crazy thing is, they don’t know what causes it nor how to treat it. (When a subset of patients were labeled with “Chronic Fatigue Syndrome” (which is sometimes used synonymously with M.E. but they’re actually not the same illness, and “fatigue” is the least horrible thing about M.E.) that new label gave doctors and the public apparent leeway to trivialize and neglect a real illness for decades).
I am writing such a long post (which took me 3+ months to make!) about this because there is no reason why an illness which for decades has been affecting as many people as AIDS should be getting 1000% LESS (yes, one thousand percent less) research and education funding. Male Pattern Baldness gets six times more funding than M.E.!!
Also, if I had been diagnosed much earlier, I would have known that overexerting myself and passing my broken anaerobic thresholds would mean that I wouldn’t recover like I should (some of you are aware how after I do some activity or event I’ll be sick in bed for days). This includes not just physical activity, but socializing, and mental exertion as they all require physical energy from our bodies. It is very likely that my disease wouldn’t have progressed as far as it has, had I known what was going on and how I could avoid exacerbating it. (My recent Postural Orthostatic Tachycardia Syndrome diagnosis is tied to this and could be caused by damage from the M.E.) But, for many reasons, including the medical community’s lack of knowledge, and my Christian Science upbringing / attending CS schools where nothing was done when I first became severely ill (my freshman year at Prin college), I had never even heard of something akin to Myalgic Encephalomyelitis and what it could do to my quality of life until 17 years later.
So what can you do?
Well, there are quite a few things, depending on your time and resources.
1. Share on Twitter
2. Share on Facebook
3. Sign this letter to your Congress people
4. Donate to my YouCaring page to help me get an adjustable hospital bed as that’s where I must spend most of my day, otherwise I get sicker – these days even from standing a short time.
5. Be compassionate to people with chronic illnesses. I can’t tell you how many people over the years have jumped at the chance to help someone with an acute illness only to turn around and completely ignore, belittle, and/or minimize a chronically ill person and/or their illness with well-meaning (or not-so-well meaning) advice and judgments.
Chronic illness is inconvenient:
-for the people who may want to help but there’s no end in sight
-for the people around the chronically ill person who think we should just “get over it” or “get on with life like everyone else does.” (If you’ve never been in severe pain 24/7/365 you really, REALLY don’t know how physically impossible that is)
-for the loved ones who witness our suffering day in and day out
-but most of all, for the chronically ill who can’t live the lives we want to be living because of the physical limitations placed on us through no fault of our own.
Please know that being dismissed and neglected by those we care about often hurts just as much as our chronic illness. Just because we have to continually turn down invitations or don’t have the stamina (or memory) to call/email you back doesn’t mean you should forget about us…