This is going to be a difficult post to write. I’m a very private person, but I’m working on that. There are some things, though, that no matter how much you want to be vocal about them that either you can’t find the words or fear prevents you from saying them, even if it’ll help someone else. That fear could be unfounded, or you could have history that causes that fear. And in this case, I have history that causes that fear.
“The enemy is fear. We think it is hate, but it is fear.” -Gandhi
I don’t want to be afraid anymore. I don’t want to be afraid of being looked at like there’s something wrong with me. I don’t want to be afraid of missing out on a job offer (I’m not looking – it’s just a fear that’s there). I used to be afraid of it holding me back from getting into a good school, or making it through school (because that’s when my history started). But I’ve had a lot of changes in my life over the past couple of months, and I’m not afraid anymore. So here goes.
I’m 32 years old. I’m have a full time job that I really enjoy, I received my MBA in Marketing (as a full time student, with a full time job), I have a husband, two cats, and a mortgage. I like to travel and have a lot more places to cross of my bucket list. I have good days and I have bad days – but my good days and bad days aren’t like everyone else’s.
I have Chronic Fatigue Syndrome (CFIDS – or Chronic Fatigue & Immune Dysfunction Syndrome, to be exact) & Fibromyalgia. The Fibro part seems to be more accepted today. People understand pain. They don’t understand how it’s a constant pain that lessens or worsens (mine is primarily affected by the weather) but never really goes away. Even if you’ve learned to ignore it like I have, it’s still there. Still waiting to pop out and make you have a bad day. But the pain I can deal with. I work through it with the aid of ice packs or heating pads (I’m on blood thinners right now, so I’m staying away from painkillers for the most part).
The Chronic Fatigue part – that’s what people don’t get. And I don’t take offense to that. I don’t take offense when people just don’t understand something, but are open to learning about it. In the end, it’ll make us less stigmatized. I do take offense to national publications pushing junk sketchy science about a subject they don’t understand – and calling us names while we’re at it.
Some background on my CFS/ME. I received my diagnosis a long time ago – it’ll actually be 18 years in March. I’ve been wearing the CFS diagnosis for over half my life. In the beginning, I was a CFS Sufferer. I’m now a CFS Survivor. I never had the “Yuppie Flu.” If you saw me at my worst, you’d know it wasn’t “all in my head.” I was bedridden for six months at 15 years old. I was a runner, a soccer player, an honors student. I was looking forward to getting my driver’s license and working on the school newspaper and going to high school dances. Until I didn’t have the strength or the energy to get out of bed. But, they like to say it was all in my head. After I recovered enough to return to school, I had people look me in the eye and tell me they thought I had died. I had a teacher ask for a death certificate so that I would be able to cancel my reservation on a school trip I planned to go on and paid for. A teacher.
He ended up with cancer. But anyways.
It’s been almost 18 years, and I’ve made so much progress since my diagnosis. Most people don’t know I have CFS, and I kind of prefer that. That way, they don’t stigmatize me. They get to know me for who I am without seeing the labels the many people have given those that have CFS.
It’s true that I can’t do as much as I could do. Being bedridden for that long, your muscles start to atrophy. 18 years later, I’m still combating that. I put on weight when I was first diagnosed, and my weight has steadily increased over the years. Am I proud of that? No. But I’ve come to accept it, and in the process, accept how I look and not hate myself for it. But most importantly, I finally reached a level of energy that I didn’t have before, and I’m starting to exercise to combat it. But again, I’m one of the lucky ones, and my story isn’t the same as most everyone.
Recently, the Daily Telegraph (UK newspaper) published two articles on Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME). It’s hard for me to even call them articles. If you really feel the need to read them, here’s the first article: ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers , and the second: Chronic fatigue syndrome: the symptoms
(I am impressed with the byline for the second article, “How you can tell if you have ME and that you aren’t just tired.” Apparently, it’s that difficult to distinguish between not being able to get out of bed for weeks and needing a nap.)
It’s not enough that one article calls CFS/ME the “Yuppie Flu.” That term made it into both (with the caveat that CFS/ME was “once dismissed” as the “Yuppie Flu.”) Hell, even the caption under the picture in the second article smacks those with CFS/ME across the face. Here’s a screenshot for posterity:
Give that caption another read. Based on the article, the “militant sufferers” are those who say that CFS/ME isn’t all in our heads. Both of the articles reference a “major study” by King’s College regarding the effects of exercise on CFS patients. Ok, I can go with that. It’s what the article repeatedly stresses that’s getting those in the CFS/ME world up in arms:
Fear of exercise exacerbates ME and sufferers need to try and get up out of bed if they want to get better, a major study by King’s College has found. (Source)
There’s lots of things that I fear. I fear spiders. And climbing up on ladders or chairs (not of heights – I’m fine at the top of a tall building. Fall from that, and it won’t hurt long – it’ll kill you. Fall off a ladder and it’ll hurt.). I fear that my house won’t sell and that we’ll be stuck in Pennsylvania for another winter. I don’t fear exercise. I wouldn’t have invested $2000 on a Nordictrac Tread Climber if I was afraid of exercise. I wouldn’t have a FitBit, and I wouldn’t be pushing myself every day to exercise if I was afraid of it. Yes, my muscles hurt more now that I’m working out, and my joints creak and pop worse than before. Tell me how that’s a fear of exercise.
But because this all was written as the headline and in the first few lines of the article, whatever meager explanation the article provides gets lost – because how many people will read an article that doesn’t affect them? They read the headline and move on. And the headlines only serve to perpetuate the idea that “it’s all in our head” because we’re afraid of exercise.
One to four million Americans* are afraid of exercise apparently. Good to know.
*this is an estimated number. The CDC estimates that less than 20% of those with CFS/ME have been diagnosed.
If you knew me before diagnosis, you’d know that I wasn’t afraid of exercise. I wasn’t the fastest runner, but I had a hell of a long kick in soccer. And I was outgoing. I didn’t have the anxiety that I have today; anxiety about being in public places, about being in crowds, about meeting new people, about people knowing I had something wrong with me. That girl’s long gone. But she reappears every now and then. Because someone had to speak up for those who can’t.
I’m going to add a few more fears to the list. I’m afraid that someone I care about will have the struggles that I do. I’m afraid I’ll pass this on to future kids (whenever they come around) because there’s still no known cause but it could be hereditary. I fear not having the strength or the energy to get out of bed in the morning.
But above it all, my biggest fear is the one that I’ve had for 18 years. That what I have isn’t CFS, and is actually much worse and is just biding its time. I take consolation in the improvements I’ve had over the past 18 years. Better the devil you know, and all that.
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