ME/CFS: The Magic Invisibility Disease

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!

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14 comments on “ME/CFS: The Magic Invisibility Disease

  1. Stefanie says:

    Thanks for a great post. Before the internet and blogging I never knew anyone with ME/CFS and now I “know” quite a number of people. I am amazed when I still hear doctors or others say the disease is not real it is all “in their heads.” makes me angry. And I understand what you mean by invisibility. I understand it in another way too since my husband has MS. He is not obviously ill and people, especially his former employer, don't understand how he can get fatigued like he does or why some things suddenly become confusing and hard for him. It is up to us to educate people but it takes so much work and is so tiring! So thanks again for this post. I'll see if I can find a few dollars between the sofa cushions to make a donation.

  2. Sylvia says:

    Thanks, Stefanie. I know that you and the Bookman understand this sort of phenomenon all too well. It really does baffle me when doctors deny the illness, considering there is a mountain of physical evidence for it, from genetic dysfunction to reduced blood flow in the brain. It just goes to show that doctors are mere mortals, as capable of irrationality as anyone else!

  3. I noticed your INTJ remark, I love that book. I'm an ENFP so we'd get along great. Personally I like the names best, I'm and Idealist Champion! But I suppose that's the ENFP in me 🙂
    I've been thinking about you lately with respect to your disease. Mine isn't so debilitating as yours but it feels so helpless. I've been comparing it to a drive by as well. I'm just sitting on the couch and the next thing a swarm of mosquitoes and bees attack me. I'm glad I don't have a job right now. My face doesn't go back to normal until around two in the afternoon. I'm also struggling with the fatigue of my low thyroid. Sometimes it just feels like my normal and sometimes I get mad. In our day and age there isn't any way to fight this? Find a cure? Maybe someday.

  4. Sylvia says:

    From what I've been reading, ENFPs get along great with pretty much everyone! I like the INTJ title too: Mastermind (mwa ha ha ha ha!)

    Yes, disease and disability does seem as random and unfair as a drive-by, and despite our amazing medical knowledge today, there are still so many things we don't know. I see it as one facet of the eternal human struggle to deal with misfortune and powerlessness. I think for this reason Greek tragedies will never get old.

  5. Yes, I was just reading Oedipus, perhaps you read my post, usually in the Greek tragedies they bring it upon themselves in some way by disobeying the gods. It is only Oedipus that doesn't deserve his fate. I'm sure hives are much better than his bad luck.
    Laugh out loud to your Mastermind laugh. Now I'm picturing you with a white cat slowly stroking it.

  6. Sylvia says:

    Yes, I saw your post, which is what brought Greek tragedy to mind. Hives certainly sound better than what Oedipus had to go through!

    Don't worry, my feline friend is a tabby, and we will rule benevolently… 😉

  7. Seesaw says:

    Great post Sylvia!
    Am also one of those who, only thanks to meeting you on Internet, does know there is ME/CFS.
    I admire the way you are coping and only wish I could do something. But my resources are more than limited. Yet, as Stefanie said,it is up to us to educate people.
    You may feel invisible, but you will never be alone!
    Wish you all the best, God bless.

  8. Sylvia says:

    Thank you Zdenka! I don't feel alone with wonderful people like you out there to accompany my cybertravels! I don't know where I'd be without the internet—probably writing to penpals all over the globe!

  9. Anonymous says:

    great post sylvia! i, too, live with an invisible disability, as many mental illnesses are (unless one is in the throes of an exacerbation). recently i got a dose of extreme fatigue with a very low vitamin D level; it was awful! i can now empathize more with CFS sufferers.

  10. Sylvia says:

    Thanks, Anonymous. Indeed there are many invisible illnesses and disabilities, and it is very hard for people to understand what they can't see or have never experienced. I wish people would believe each other (and especially children!) more. People are afraid to be fooled or taken advantage of, but scepticism causes much more harm than good, I think.

  11. Anonymous says:

    Hello – I am a 58 year old male and just started out on this sorry trail. I gather that as a male sufferer I am in the minority and somehow the scepticism and disbelief is therefore all the more prevalent – and this is just from the medical profession. I was told by a gastro-enterolegist that it was in my head and told bluntly that I needed a psychiatrist, counsellor or psychologist. This in spite of the fact that I had low Vitamin D levels – a marker for ME/CFS apparently. No one seems to have told him this.
    Thanks for showing that it is a real disease – and not, as has been implied, in my head.

  12. Sylvia says:

    Hi Anonymous58! I'm sorry to hear you've joined the invisible club. I sometimes think it is harder for men with this disease because they're expected to “be strong” and “tough it out.” It's quite all right for women to be head cases, but not rational men! I will be so glad when someone develops a commercially viable test for this thing. There are certain people whose faces I'd like to see when that happens!

    You might be surprised to learn that psychiatrists and the like are often very educated about the disease because other doctors keep mistakenly sending them ME/CFS patients. They know how to properly diagnose emotional problems and so they know better than anyone that ME/CFS isn't one. I got sent to a shrink and it was the best thing because he was emphatic that my problem is entirely physical. I'm sure there are still some doubters among them, but from what I've heard my experience is typical.

    If I had any advice for a newbie it would be to ruthlessly and shamelessly reduce the amount of energy it takes to do the necessities, and use whatever energy is left over to build a new life for yourself. The old life is gone and it's not likely to come back. Time to reboot and try new things. That's how this blog got started! 🙂 Good luck!

  13. Tina Baldwin says:

    Hi, Sylvia. About ten years ago I was diagnosed with Fibromyalgia. The doctor pokes you in a number of “sore” spots and if you holler out in pain more than a specified number of times… Voila, fibromyalgia. The doctor also told me that Fibromyalgia and Chronic Fatigue Syndrome were essentially the same, two sides of the same coin. If you complain more about the pain than the fatigue you have Fibromyalgia. If you complain more about the fatigue than the pain you have Chronic Fatigue Syndrome. When I asked my other doctors about this they said it could be true. Very little is known about either disease or its causes.
    I am plagued with two other chronic conditions, EDS (Ehlers-Danlos Syndrome)and severe degenerative arthritis. So I have a trifecta of chronic pain conditions.
    It is a good thing I love to read or I would be in serious trouble!

  14. Sylvia says:

    Tina, I'm sorry to hear about your serious health problems. Yes, reading is a real life saver for people in all sorts of unfortunate conditions. Thanks to writers for keeping us entertained!

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