Now you see me, now you don’t! That’s what it was like 9 years ago when I came down with ME/CFS (myalgic encephalomyelitis, a.k.a. chronic fatigue syndrome). Monday morning I arrived at work, bright-eyed and bushy-tailed; by Friday I was flat on the couch wondering if anyone had gotten the license plate on the truck that had just run me over. My doctor suggested I take two weeks off work, but I said one would be enough. It wasn’t. A few week later, my counsellor said I might be off work for 6 months; I said that would not do, I had to be back before then. I wasn’t. The reality is that I simply disappeared the day I went home sick.
In many ways I feel fortunate. So far I have managed to hang on to my disability pension, thanks to my wonderful doctor who stands up for me. I have a positive outlook—I spend very little time lamenting what I can’t do, and instead am always trying to figure out what I can do. I don’t take the credit for that—it’s just how my INTJ brain works. I’ve always enjoyed problem-solving, and disability is just another problem to solve. It also helps that I have always been pretty good at entertaining myself, so spending most of my time at home does not drive me crazy as it does some people. I can keep surprisingly busy with books, music, movies, and (not least) the wonders of the internet, including all you fine, fun, interesting, sharing, and caring people. I don’t think I have to convince anyone reading this how much the web can enrich one’s life.
But despite all the activity I manage to squeeze out of my perpetually exhausted body and brain, my life is effectively invisible, since most of it takes place in my head and in my home. I’d be hard pressed to name 20 people in my town who can positively confirm my existence. For most of the people I used to know, I simply vanished, and you’d be shocked by how few of the people you used to see every day bother to enquire about you when you’re gone. It’s also difficult to explain to most people in any satisfactory way what I do with my time. The life of the mind is also invisible. Most people (i.e. non-readers!) simply can’t picture a life that consists mainly of reading books and surfing the web.
ME/CFS doesn’t just make me invisible, it is invisible itself. When I do go out and see people, they always tell me how good I look (which is partly because I only go out when I’m feeling relatively well). Though this sometimes presents a bit of a credibility problem, it’s also handy when I don’t have the energy to explain my situation to people. After a while the “What do you do?” question will arise, but in most casual situations I can “pass” for “normal,” which is undoubtedly an advantage given the human propensity to draw back from people who look “different.” I’ve seen studies that suggest humans have an instinctive aversion to people who look sick, so I’m glad I don’t have that to contend with on top of everything else.
The real downside of all this invisibility, however, is that it has resulted in a lack of public awareness about this disease, which in turn leads to a lack of funding for medical research. I think most people have heard of it by now, but few have a grasp of how serious an illness it is. People with ME/CFS are as sick as people who’ve had heart surgery or are receiving chemotherapy. It is more common than breast cancer or MS. Anyone can get it—it affects people of all ages, races, countries, and socioeconomic classes. The problem is that people who get it, like me, vanish. No one but our closest friends and family sees what we go through, and we don’t have even close to enough energy to march in the streets or bang on the doors of Parliament or Congress to demand research money. There is some research going on in various countries, but it is far from adequate for a disease that has “disappeared” millions of people and robbed our world of so much human potential.
If you’d like to help people like me become visible again, consider donating to a ME/CFS organization in your country that is pushing for more research, or even funding it. I like the CFIDS Association of America because they are taking matters into their own hands and raising money to directly fund research on behalf of patients. You can also write or email your government to ask for more research funds to be directed at this illness (here are some sample letters). Lastly, you can spread the word about ME/CFS so that more people will know that it exists, even if they can’t see it. Thank you!
