Adapted from a F***book post on March 25, 2014
Woman Takes on her Pain with English Channel Swim
This. pisses. me. off.
I do not mean in any way to diminish the achievements of this woman who has lived in the nightmare of chronic pain nearly all her life.
But. This runs the risk of deluding people into thinking that all chronic pain sufferers should be exercising as a way to handle their pain. As though we are slackers and whiners, and gosh, that girl is swimming the English Channel, is it really that hard for you take your trash can to the curb?
It completely dismisses the great majority of chronic pain sufferers whose pain is due to an actual injury, and that exercising it makes it worse, not better.
Swimming, in fact, is the reason I’m in this situation. While it took a while to nail down an official cause, gradual development of posture misalignment combined with an intense swimming regimen has been determined as the culprit. I do what I can at the gym, but that’s for my sanity. It’s got nothing to do with my pain, except for the fact that my injury has prevented me from engaging in nearly all of the types of exercise I used to do to stay in shape. And I’m one of the lucky few who can still exercise at all. Many, if not most, chronic pain and fibromyalgia sufferers can’t even do that much.
You know what helps my pain? Rest. Not moving. Lying on my back with a towel rolled up under my neck, preferably. That is the only thing, other than nerve manipulations (stick a needle in the nerve branch causing the pain and chemically or mechanically disable it), that makes my pain better (for a short while). However, since I am a part-time student with a part-time job (although I’ve had to cut back the hours on both), I can’t rest most days. I have to go about my business, appearing totally normal to the casual observer, all the while trying to ignore the stabbing, burning pain in my neck and shoulder that accompanies me wherever I go and whatever I do.
Wish somebody would write a news story about that.
I am not extensively knowledgeable about Fibromyalgia however I know that people with this auto immune disease suffer from chronic pain and know a few people that have been diagnosed with it. I knew one woman that could not tolerate being touched, even if it was ever so lightly because it would cause her so much pain. I have Lupus and in my limited knowledge about Fibromyalgia, I am assuming that one similarity between these diseases is that the symptoms (in this case the pain) widely varies from person to person. Not only because everyone’s tolerance for pain is different, but depending upon exactly what is being affected and the progression or aggression of the disease itself. As I do not reside in this swimmer’s body, I do not know what her pain is like, and I know that she does suffer from pain. However, like you, I believe that (limited) articles like this perpetuate the ignorance about Fibromyalgia (especially since a lot of people do not know what Fibromyalgia is let alone how it can affect a person). Another thing I’ve noticed is that someone can read one article and that’s enough information for them to believe it. In some cases, the articles have proven to be false (hoaxes) or lack significant information. The comment on the article in which the person basically said that Fibromyalgia is not a disease upset me a lot. I understand now that you cannot explain something intangible (like pain) to someone who has never experienced excruciating pain, let alone chronic pain that just gets frustrating and old. I can see how certain people who read the article and don’t know about Fibro, could take it as it not being a big deal because if this woman had it for over 20 years and is now extensively training for the major feat of swimming across the English Channel (something that even 100% healthy athletes have failed to accomplish), then other people who are “suffering” must be doing something wrong, or not doing anything at all. I’m sure like me, you have thought about this subject a lot. For me, I’ve had people tell me that all of my symptoms were in my head, I have low pain tolerance, that Lupus is not a real disease, I was a hypochondriac, I was just lying or acting as if my symptoms or pain was worse just to get out of going somewhere or doing something, and the list goes on. It is like a slap in the face; insult upon injury; especially when coming from someone who is close to you and who should be just a little bit more sensitive; or at least do some research, ask questions with an opened mind, and attempt to “understand.” I read your post “Three Things Not To Say To People With Chronic Health Problems (And What You Can Say Instead).” I really liked this post and that you had said that when someone shares their story with you, it’s not that they are asking for medical advice. It’s not that I want them to “fix” me or to tell me what I should try or should do, but that’s what usually ends up happening. Would this article then be something that someone brings up one day and starts suggesting that we exercise more and eat a “healthier” diet? As if the reason that we have pain is that we are “lazy” or not doing anything about it? Sorry about the ranting, it’s a sensitive subject for me and I just had to say something about it.
No need to apologize for the ranting – as you may have noticed, there’s a pretty high tolerance for it around here. 🙂 Thank you so much for sharing your feelings and your story. Writing this blog has connected me to so many others who are suffering with chronic pain and the loneliness that comes with it, and I’m always honored when others are able to open up and share their stories with me. We help each other. Big [gentle] hugs. 🙂