By Erica Verrillo
I am breaking a self-imposed rule today by addressing ME/CFS in the first person. It is not a subject I like talking about, except in the abstract: What research is being done? What treatments are effective? What can we do to pressure the government into taking ME/CFS more seriously? Why must we have so many acronyms?
Those questions are relatively easy to address. “How has ME affected me?” is another matter entirely.
Looking back on my long acquaintance with chronic illness (four of them as of this writing, but who’s counting?) I have discovered that these illnesses have changed me – in some respects for the better. No, I am not one of those “glass-is-half-full” people (the glass, by the way, is entirely full; it is half full of water and half full of air). Nor do I experience “gratitude” on a daily basis. It’s more a matter of perspective.
This is what I have learned:
1) Most things can be put off. The world seems to run on crises that are to a large extent manufactured. Most things can be delayed – or not done at all. Laundry, for example. And, apparently, my car inspection.
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2) The world not only turns without you, it travels in the same ruts. When I got sick there was a war. Two years later, when I sat up and resumed reading the news, there was the same war. It was in a different location, but the basic features were the same: Bombs. Death. Incomprehensible politics.
3) Lots of things aren’t important – especially things you might have been doing for the wrong reasons. When I contracted ME I was finishing my PhD. At the time, I thought it was important, and the reasons I had for wanting a career in academia seemed to make sense: “Long vacations,” “Academic departments are hiring women,” “All the other kids on the block have one.” The reasons that weren’t on my list were: “I like academia,” “I like talking with academics,” “I am committed to my field of study.” It turns out I really don’t like close contact with people who think they are saying something meaningful when they are just blathering.
4) People say stupid things all the time, and it doesn’t matter. When I first became severely ill, a friend said, “Are you working out?” I confess that at the time I wanted to kill him. (That was a job later performed by excess amounts of alcohol.) And when my daughter contracted ME, another friend said she was just “imitating” me to “get attention.” Were those awful things to say? Yes. But people routinely say awful, stupid things, and most of the time they aren’t even aware of how awful and stupid they are. That’s because they are awfully stupid. You can’t fix stupid. But you can ignore it.
5) Doctors don’t know jack about the human body, and I don’t need to tell them that. At first I wanted help from doctors. Then I realized they didn’t know more about what was going on inside me than I did. What was more, they didn’t seem to care. So, I began telling them they were full of crap. As the years wore on, I gradually became aware that I was not going to educate doctors – they are, as a profession, unteachable. I now know that GPs are nothing more than glorified drug dealers. So, I only go to one when I need a fix. If I need more than that, I’ll go to a vet. (When your patients can’t talk, you really have to listen.)
6) Illness doesn’t happen for a reason. There is no grand plan, and God gives you plenty you can’t handle. (I don’t believe in God, but aside from that there is an obvious flaw in that statement: suicide.) There is no path, and we are not on a “journey.” I didn’t like metaphors when I was studying them, and I like them even less now. If you want to make a comparison, give me a good honest simile.
7) I breathe therefore I am. There is nothing that anybody can do to me that is worse than what I have already experienced. No matter how much weird stuff goes on inside my body, and no matter how many doctors dismiss me, no matter how many government agencies refuse to do a damn thing to stem the tide of what is surely an epidemic, no matter how many friends abandon me, no matter how many jobs I have lost, and no matter how many years I have spent lying in bed wishing it were over, I am still here. True courage is simply this: We are alive. And as long as we are alive, we must persevere.
Erica Verrillo is ProHealth’s expert editor for the ME/CFS HealthWatch and Natural Wellness newsletters. She is the author of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition, available as an electronic book on Amazon,Barnes & Noble, Kobo and Payhip (PDF file). Her website,CFSTreatmentGuide.com, provides practical resources for patients with ME/CFS. She also writes a blog, Onward Through the Fog, with up-to-date news and information about the illness, as well as the full text of CFS: A Treatment Guide, 1st Edition (available in translation).