And Now For Something Completely Different

I know my blog is about writing, but this particular subject hit me close to home this week when I read some articles about Prince’s death and his use of pain killers. I don’t talk about it much (particularly on here), but I have chronic and severe pain to the point of disability due to the combination of a genetic condition called “Ehlers-Danlos Syndrome” (EDS) and Fibromyalgia. I also struggle with depression, anxiety, and PTSD.

I don’t bring this up because I want attention or pity, but the modern trend of treating chronic pain patients (as well as those with psychological struggles) as somehow lesser or weak disturbs me. It’s something I’ve faced in life many times when I was told by doctors that I was just looking for painkillers (I wasn’t) or when I’ve had people not believe that I just can’t do something because I don’t “look sick”. The trend of dismissing or degrading people who don’t “look sick” is ridiculous. No, I don’t look ill. I am a healthy weight, I have a slight tan, and on good days I don’t walk with a limp or have to shuffle around hunched over like Quasimodo. Even on bad days I’ve become really good at faking it.

A while ago I encountered an article discussing what’s known as “spoon theory”. As I read, I felt more connected than I had in years. It provided me a way to communicate that I might be running out of my rather finite energy resources. I explained the theory to the people closest to me, and now we use it as a way for me to express when I am hitting my limits. It’s helpful—at least when people listen. There’s this tendency by people around a chronic pain patient to do one of two things: become overly saccharine (“Oh, I’m so sorry; you poor thing,”) or dismissive (“You’re just not tough enough to handle it.”). Neither of these responses is particularly helpful.

Folks who are disabled often end up feeling like their life is defined by their disability, and those responses only make it harder. I am not my pain. I am not my diseases any more than a cancer patient is their cancer. In fact, I typically don’t want any attention called to my disability unless I’m the one to mention it, and at that point I keep it short and limit it to: “I can’t do that. I’m sorry. I’m in too much pain.” I don’t need or want coddling or extra attention, and I certainly don’t need people telling me that I should just soldier through it. I do that more than anyone except, perhaps, my husband knows. It’s how I’m designed. I push myself until I can’t anymore, and at that point I only reluctantly accept defeat.

But I don’t look sick.

The world is full of people who aggrandize their pain or discomfort in order to milk attention or justify laziness or unwillingness to do things. That’s a very real thing, and I’ll be one of the first to say how much it angers me when that happens. Why? Because it damages my ability to have folks take me seriously when I say I can’t do something. Of course, it just looks like a perfectly healthy woman sat down and said, “I’m done with today.”

The reason I’m writing this is mostly for awareness and for also my own admission. It’s been a difficult, long road for me to admit to anyone—including myself—that I’m really, truly, honestly sick. I’ve had many people in my life who haven’t accepted that reality, and that has made it difficult for me to accept it or even risk sharing it with others. The awareness portion of this is to ask people to think a little harder when someone says they’re hurting or handling something serious. Our instinct as a species is often to expect (or suggest) that people hike up their underpants and push on, ignoring whatever it is that’s hurting them.

To anyone who has been suffering in silence or is afraid to accept your limitations: it’s okay. My life isn’t what I thought it would be, either, and I’ve had to change my understanding of myself and my limitations as time has gone on. The recreation and re-structuring of my self realization has been painful and slow, but it is what it is. You will have your own process to go through, but remember what I said earlier: you are not defined by your pain or your disability. You are not defined by what you can or cannot do. You are defined by who you are and what path you take through your adversity. You also aren’t alone.


3 thoughts on “And Now For Something Completely Different

  1. Helen Bellamy says:

    Beth, I am so sorry that EDS is the over-arching presence in your life (I always realized that you ARE a rare personage). Coupled with fibromyalgia, the pain and discomfort must be a constant drain on your energy and endurance. Your article is on point, and I also learned a new approach from “the spoon theory”. Thank you for sharing such a personal part of your life. HB

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