Wednesday, February 15, 2012

What I really do

I made this. Click on it for a larger version.
Maybe, like me you've seen a lot of these memes on your Facebook page. First it was directors, then photographers, then wedding photographers, then geologists. Most of them are for professions, but they are branching out. Yesterday I saw one for Mormons. The idea is to show all these different stereotypes held by others, and then in the last frame show how mundane the job really is with a picture of someone doing paperwork or sitting in front of a bunch of monitors.

I don't have a job or a profession. Unfortunately, the closest thing I have is CFS. And CFS was really perfect for this template because everyone has misconceptions of it and it's a major problem.

The final frame is supposed to be the punchline, the funny, mundane reality of the seemingly glamorous profession. I couldn't do that. Maybe there's someone who can, but I couldn't. I couldn't think of anything to put in the "What I actually do" square that would be funny. And I can't try to seriously sum up the reality of CFS with one image. So I left it blank. And then it looked too white and cheery to I made it gray. I'm hoping it at least in conveys some sort of sense what everyone with CFS knows, that what it really does is steal your life away.

I would like to explain my thought process behind some of the other images before I offend my friends, parents, doctors, and society.

The idea that CFS is not a serious disease. That it's the yuppie flu. That it's something only upper class white women get and they make it up so they don't have to work and can spend all day in yoga classes instead. I am thinking specifically of something erv said. Erv is a science blog that I read during the whole XMRV thing to ge a different perspective. The comments section was always a circus and a battleground. Offended PWC's vs. erv and her readers. Someone left a comment trying to make the point that CFS was a serious disease. Here is how erv, a grad student researching HIV, replied, "Those poor, poor CFSers with their yoga classes and homeopathic 'physicians' and computers and internet" (Comment 144)

Sadly, I think this one is pretty accurate. Certain CFS specialists excluded, there are still too many doctors who do not think CFS is a real disease, and that the people who think they have it actually have depression. The fact is, as I wrote in my last post, doctors don't treat me like I have CFS, they treat me like I have depression, which is no help at all. They think it is something I will snap out of in a few years and are surprised year after year when I get worse.

Obviously, the closer someone is as a friend, the better idea they will have of the reality of your disability. But how many of us, when first getting our diagnosis, have told a friend we have Chronic Fatigue Syndrome, and heard them answer "I think I have that too" or "We all get tired"or "You just need some coffee!" etc. Because of the name, people think it just means we have normal fatigue like everyone else.

By now my own parents know that my problem goes beyond not being a morning person. But still, when I was looking for an image to use for parents, this one just resonated with me. It describes my experience in high school when day after day I could not get up for school and my parents, who like me, didn't know what was wrong, tried everything to get me out of bed. That was more than ten years ago. But still, when I go home to visit, this is how I feel I look to them. They want me to do everything on their time schedule. I have felt guilty over and over again because I could not get up early enough at the time they set to go have lunch with grandma. "Come on, get up, don't disappoint grandma!" We are working on talking about it though and we are getting better.

This is actually pretty accurate for me. I am mostly housebound, but not bedbound, so I pretty much spend all my time sitting or lying on the couch. And I am highly dependent on my laptop. For some more severe people it would be a person lying in bed. I said in my last post that I told my doctor, "I do nothing." That's what it feels like. She asked if I went to school or worked or volunteered and I can't do any of these things. And what else is there to do that seems like a real thing besides raising children? So in my dark moments I feel my life is being wasted and there's nothing I can do about it. Which is true, but on the other hand not entirely true. I have my boyfriend and my friends and my family who all make me so happy. And even though I can't write as much as I used to, I can still write a bit, and I can still read most of the time. Little things like that. I have to remember they are meaningful too.

So anyway, there is is. Please feel free to share if you think it's entertaining or useful.

When I was making it I noticed that there is no need for a square called "what my boyfriend thinks" because he lives with me and sees me every day, so he knows better than anyone. I know I could do a better job trying to help the rest of the people in my life understand. But it's something I'm not very good at. Sometimes I want to give everyone the impression that I'm better than I am, mostly people my age, so they'll be more likely to stay friendly if they think I'm young and energetic like them and able to do the things they do, even if I'm not. Sometimes with my friends and family I say I think I can do things I know I can't do because I don't want to disappoint them. And sometimes I am just being self-delusional and really think I can do things I can't do.

It's a complicated situation. But one thing I know is that a lot would change if only this disease had a different name.


  1. I didn't get the first frame (the society one) until I read your explanation, but now I totally get it. I can so relate to all of this. I thought leaving the last frame blank was totally appropriate.

    I just wanted to let you know that here's another person in the same situation.

    I had never picked up on visiting my parents in the way you mentioned until you mentioned it. They know I need to rest and they mind my son when I'm visiting so I can rest. But when I'm not "officially resting" they expect me to do more than perhaps I should because they remember the me that used to do things, and don't see the me at home who does very little at all.

  2. It's funny, the society frame was the first one that came to me. I'm glad you got it after you read the explanation but my old design teacher would still say I failed. Oh well! Good to know people can relate to the parents one. It's tricky.

  3. Hey Alison, You don't do nothing! You write this blog for a start, and you have a lovely way with words, I *always* enjoy your posts, even though I am jaded by most ME blogs. In my opinion, the sooner we get back to the name ME and banish CFS - for the illness you and I both have - we might get somewhere. This conflation of neuroimmune illness with fatigue disorder does *no one* any good. But disentangling those who have ME from those who don't will only happen when universal criteria are agreed upon and adopted. May be easier said than done.

    1. VERY well said. This is my first read of this truly WONDERFUL blog and I wanted to "walk" around first before writing how impressed I am, but I'm afraid that "Nassim" has done a better job than I could, certainly in fewer words! Thanks!

  4. Thanks Nassim! I've skirted around saying ME for various reasons, from silly ones like never being able to remember how to actually say the words "myalgic encephalomyelitis", to not wanting to sound like an American using Britishisms. But also because no neurologist has ever diagnosed me with anything. I don't know why I'm hung up on that though. Any name is better than Chronic Fatigue Syndrome.

  5. I just want to say, you ROCK! Excellent work! Articulate explanations! And more validation for me and what I go through, thanks!

  6. Alison, brilliant. And to think you were following my blog for so long without me somehow finding your blog! I really am disgraceful w/ the internet. I am really enjoying what I see here. Excellent job and *I* understand you, I hope you know!

  7. Ok...fibro-brain strikes again. I found you through one of my followers. I am embarrassed a second time for trying to keep people straight.

    Nonetheless, I am so happy I found this blog and hope you can forgive my blooper. The writing is both impressive and to the point yet completely understandable. The examples given are spot on. Finally, I want to cry but I want to laugh.

    Incredibly great. I'm so happy to have found this site and do hope you can check mine out, a definite work in progress, started at the end of February, though I've had this DD for 37 years.....

  8. I just came across your blog about CFS. I have been told that I have fibromyalgia and I am wondering what the difference is. I feel exactly like you described. I am just starting out trying to figure out what is wrong with me and how to live any sort of life. I have been trampled by this disease for over 10 years but I keep hoping that I will get better with each passing day I lay in my bed and feel I am a failure to my family and all those around me.

  9. I just stumbled upon this from pinterest. I can fully sympathise. I've spent all year battling and basically either cfs or depression. My doctor has been amazing and it has been me fighting the diagnosis. I have just began treatment for depression as I went through a difficult year with a bereavement last year so signs in my mind point more to that. But I have had people make the oh I'm tired too, you just need a good sleep etc.

    I can't tell you how much I agree with the whole name of the condition.. It almost screams don't take me seriously.

    Thank you for showing such an accurate view
    Missy x

  10. I too just stumbled upon this from Pinterest. One more person here gets it! I've been battling this for over two years now, and I've already experienced how even the people who have seen what I go through the most don't take it seriously or understand it at all. To be told, "You could get better in a day if you wanted to," or to be told that you are only unwell because you want to be is just plain insulting to me. I agree that it needs a new name, but it also needs more awareness and understanding. Great post.