An illness by any other name will still mess you up

I will procure* a lifetime of free head and pizza for whomever can cure this fucking illness, originally known by the pejorative and not-at-all helpful misnomer “Chronic Fatigue Syndrome”.

Because the chance to improve millions of lives worldwide, make history, and become rich has thus far provided insufficient motivation to doctors and scientists to even develop a treatment. So, I will appeal to our most universal appetites in order to be well again. And if a lifetime of no-strings oral sex and piping hot bread, sauce, and cheese can’t do the trick, summon the robots because it’s not like R2-D2 could do worse.

I became extremely ill half my life ago, when I was 24 in 1991. Within three weeks, I went from working full-time as a domestic violence victim advocate, writing at night, and each day walking six miles and doing 300 sit-ups and 150 push-ups to being in a wheelchair, unable to walk, eat, or shower without assistance.

Sentient beings would regard this as alarming, but most of my then doctors did not. Because after dozens of tests, they could not determine what was making me ill, many told me I must be lying. One cardiologist said, “I think you’re doing this for attention.” I replied, “Does it seem like I need to fake an illness to get attention?”

Since then, the illness in question has been called Chronic Fatigue Syndrome (CFS), then Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), then Myalgic Encaphalomyelitis (ME), then Myalgic Encaphalomyelitis chronic fatigue syndrome (MEcfs), and now, as covered extensively in the New York Times, Washington Post, New Yorker, Atlantic Monthly and other esteemed news outlets, the Institutes of Medicine (IOM) of the National Academies has coined the name Systemic Exertion Intolerance Disease (SEID).

More importantly, the IOM also confirmed what those of us with the illness have known and what all reputable peer-reviewed research had long indicated: it is a multi-systemic, degenerative physical illness that has so far eluded cure or treatment. The Centers for Disease Control (CDC) estimates one million Americans have it and the World Health Organization (WHO) puts the figure at 17 million worldwide. The IOM states one quarter of sufferers are too ill to leave their homes.

How did we get here? Why do most of us with SEID** still face stigma? And how can we best spread the correct facts?

The CDC first laid out their diagnostic criteria in 1988. And with the reasoning skills of invertebrates, they somehow thought deeming the illness “Chronic Fatigue Syndrome” would not consign its sufferers to being dismissed as psychosomatic malingerers. Way to go, guys! I think I speak for all of us when I say it’s super-fun to feel like you’re dying (we’ll get to that in a sec) and to answer nearly each day, “So you’re tired all the time? Maybe I’ve got Chronic Fatigue Syndrome because I’m tired right now! I wish I could lie down all the time! HAHAHAHA!”

To say I’m “tired all the time” is to say a person with pneumonia has a cold. It is a bone-crushing exhaustion, a near-paralytic sense of inertia that overtakes your physical being. Four months after SEID’s onset, I was able to attend protracted physical therapy and walk again. But for many of us, the illness relapses and remits while growing steadily worse over time. So, I was in a wheelchair once more for several months in 2001. For the past few years, I’ve mostly needed crutches to walk more than short distances. To stay conditioned and, also, not go batshit crazy, I walk a mile to a mile and a half each day, often hobbling even with crutches, but so be it. I do my stretches while lying in bed. I do not want to remain still. I hate it with the force of a meteor shower.

But here’s the kicker: those of us with SEID become even sicker
if we over-exert ourselves, hence the “Exertion Intolerance” part of the new name. Last week, The Seattle Times interviewed me re my book Altitude Sickness. The writer kindly noted that despite being sick, I looked and sounded great. I thanked her, then explained how long it took to get ready and how sick I would be when the adrenaline ran out. I was unable to leave the house the next day, the day after that I could only walk across the street, and finally on the third subsequent day I was able to resume my usual routine. The pain was horrific, it hurt to open my eyes because the sunlight felt like sandpaper, and I kept nearly falling. But what was I going to do? Not promote my book? A pernicious and often misunderstood illness will not keep me from a major interview and/or being a self-promotional whorebag. (Seriously, we’re at two dozen stellar reviews and counting. Just because my body is destroying me doesn’t mean I can’t revel in the great times. Even if I’m lying flat with my eyes closed.)

In addition to eating healthily and exercising to the best of our ability, what else can those of us with SEID do to take care of ourselves and, also, dismantle the stigma? Tell the truth. I know it’s easier for those of us in the arts because our profession is already considered unusual, but if possible, tell those around you what you have. Open yourself up to questions. Answer honestly and don’t care what anyone thinks. It’s your health and if you ascribe stigma or further create misunderstanding by underplaying the severity of your symptoms or lying about them entirely, you make it easier for detractors to pigeonhole all of us as loons. The more informed you are, the better you can counter misinformation that stands in the way of increased research funding.

The stakes are high. While SEIDS itself is not fatal, because our immune systems become compromised over time and we become far more susceptible to secondary illnesses, this disease can kill us in a roundabout way. The U.K. began listing it as “cause of death” on death certificates in 2011 and in the States, the FDA added it to the list of “life-threatening illnesses” in 2013. And if even if you don’t die of SEIDS complications, you will die eventually of something. You can’t let others determine your self-worth while you’re here.

I’m forty-eight and know it’s likely I will never be well again. On my better days, I’m sanguine. On my bad ones, I’m devastated. It can be hard to maintain emotional equilibrium when you’ve used half your day’s energy unloading the dishwasher.

They say if you have your health, you have everything. I haven’t had my health in twenty-four years but I have a brilliant fiance´I love very much and a book garnering rave reviews. Within the bizarre confines of this illness, I live a rich life.

Sometimes in my dreams, I can still ride my bike. I pedal for miles all over Seattle.

Then I wake up.

Thanks for listening. The best of health to you and yours.

*I said “procure”, not “provide”. I will be the conduit to said head and pizza, but will not kneel or kneed.

**There’s debate surrounding this name, too. It spells “dies” backwards, for starters. But it takes the illness seriously and for that I’m grateful.