Today, May 12, is International ME/CFS Awareness Day. And I know what you might be thinking, because I think the same thing sometimes: “Why another awareness day? I’m aware it exists, what’s the big deal?”
ME/CFS (a term encompassing two similar or related illnesses: myalgic encephalopathy and chronic fatigue syndrome) is different from many other conditions that get awareness days and months, walks for the cure, and other support. Not only is it poorly understood and often misdiagnosed in the medical community, being something of a “trashcan diagnosis,” but that lack of understanding is far, far worse among the general public. Patients are still fighting off the terrible moniker of “yuppie flu” with which we’ve been stigmatized for decades, and in some cases they are fighting even to be recognized as ill at all.
Before I go any further, let me be perfectly clear that I am referring here only to issues of awareness. (I would not in a million years try to “one-up” people with other terrible diseases and conditions.) Would you accuse a woman with a malignancy in her breast of “just being lazy?” Or suggest to someone with a spinal cord injury that his inability to walk must be due to clinical depression?
And yet that’s exactly what people with CFS face all the time. In England, for example, there is an ongoing struggle to get the National Health Service to move away from treatments focusing mainly or solely on psychological issues, and to see ME (as it’s mostly called there) as a somatic problem. And there are other countries where ME/CFS is categorized only as a psychiatric disorder! Thankfully, change seems to be coming slowly, but that doesn’t help physically disabled people who have been told for years that cognitive behavioral therapy and antidepressants will cure them. Here in the States we are a bit luckier — that is, if you can find a doctor who knows anything about CFS and what it takes to treat it.
(“Return to the career I loved” was my entry, although I’m sure it was sent in by more than one person.)
Awareness has been raised recently by the publication of a paper suggesting a possible link between a retrovirus called XMRV and people who have ME/CFS. While this has still not yet been proven in any way — there have not yet been any successful replication or corroborative studies — the news did serve to legitimize the illness somewhat, and make it clear that people who have it aren’t just malingerers.
This is the most common perception of people with CFS. Because of the negative stigma of the disease, patients not only have to contend with daily physical symptoms of malaise, cognitive dysfunction, crushing fatigue, fever, pain, and so forth, we also have to deal with people who don’t take us seriously. I’ll be honest: when I see someone complaining about having the flu and how bad it feels, and all the sympathy they receive, sometimes I get annoyed. Not at that person, but simply because people with CFS feel like that every damn day and yet they’re far more likely to hear “But you look great!” and “It can’t be that bad.” Not to mention the classic accusations of laziness.
When I was diagnosed with CFS, I was engaged to be married, finishing my very satisfying and successful grad school work, and about to start on a college teaching career literally custom-made for me, combining my passions for TESOL (teaching English to speakers of other languages) as well as deaf education. I was barrelling through life towards my ambitions as I had for more than 30 years. And now? I had to quit that wonderful job because of my increasing disability. I can’t finish my degree because I no longer have the money or the physical capacity. My extremely modest exercise routine made me so sick I had to ditch it and take half of April to recover. Am I depressed? Hell yes, wouldn’t you be? My mind hasn’t been disabled, and I daily fight the frustration of the physical limitations that effectively put an end to everything I’d been working for my whole life. But this is secondary depression due to the physical disability. I dare any of you to accuse me of simply giving in to laziness.
And I have it so, so much better than many patients. Yes, I lost a friend who appeared to take my increasing inability to hang out with her whenever as a personal affront. (And I’m much better off for that loss.) But my closest, dearest, most important friends have stuck by me, and unlike many patients whose illness destroys their romantic relationship(s), I also have an incredibly loving, supportive, and understanding husband. I have a wonderful support system of online friends as well, who accept me for who I am, including my limitations and liabilities. And I have access to quality medical care, including a GP with a great deal of clinical experience with CFS.
Not everyone is so lucky. Many if not most CFS patients lose friends, partners, and the support of family members who do not understand that their loved one is sick. Without a palpable injury or malignancy, patients are often misdiagnosed by both doctors and laypeople as suffering from clinical depression or even bipolar disorder. Doctors without something to shrink medically or cut out of the body are often at a complete loss, and apt to hurry a patient out of their office with no answers, support, or help of any kind.
This is why awareness is so vital. Without the impetus that non-invisible illnesses gain in terms of research funding as well as patient support, ME/CFS remains a mystery. That is of course its defining trait — we patients are, all of us, medical mysteries — but the fact of its existence, the way to support patients, the need for research funds and scientific attention to be paid, are not mysteries. They are imperatives. I do not deny that the misdiagnosis can go the other way, and people who are in fact suffering from major clinical depression may be wrongly diagnosed as having CFS. But this only emphasizes the need for greater attention and understanding to be directed at ME/CFS. There is a collection of blog posts here if you wish to read more. And if you are moved to donate to some very promising research, please read my previous post. But even more than your dollars, I plead for your awareness and your understanding. Not for myself, but for all the patients out there who aren’t so lucky.
