Nov 5, 2011 - Physical Ed, Psychology    6 Comments

Queen of Pain

Pain and I are old friends. We go way back. I know pain’s facets and variations; pain doesn’t have too many surprises up its sleeve for me anymore.

And, as much as anyone can make this claim, I’m pretty good at pain. For years before I gave birth to my kids, I refused to claim 9 or 10 on that happy-face scale doctors use to have you rate your pain, saying I was reserving those two notches for childbirth. And as labor with my first son ramped up slowly and steadily over 12 hours, my midwife thought it was funny how I announced that yes, in fact, I had scaled my estimation of pain perfectly. That perspective helped me get through that delivery without any interventions, which is still a point of pride for me.

I was diagnosed with fibromyalgia in July 1999, possibly stemming from soft tissue damage caused by a car crash ten days before my wedding in 1996. I’d been prescribed amytriptaline for severe tension headaches that showed up when I started grad school in 1997 — tension? grad school? astonishing! — but apparently that’s a drug that occasionally just stops working. It’s also a drug that’s frequently used to treat fibro, and it seemed to have been masking the development of the syndrome’s symptoms, which all came tumbling out in an untidy pile that spring.

But without getting into all the problems of treating a disorder that nobody understands or knows how to treat, the long and short of it is that I’ve lived with all-day, every-day pain for well over a decade now. That means I’ve become quite a connoisseur. I know the nuances of it, from the flu-ache-like muscle weariness that characterizes fibro, to the silvery stabs that shake my whole body with convulsive spasms. I carry around the heavy, grinding knots that drag on my lower back, and lean away from the bright streaky pain that twists in the triangle from my temples to my jaw to my shoulders.

The irony is that, as good as I am at tolerating a daily level of pain that drives many people into the ER for relief, I can be a total wimp about new, unexpected pain. Sunburn? Toothache? Gallbladder attack? A fresh injury? I produce as much whine as the south of France. Imagine a baseball umpire who’s put up with the vicious insults and recriminations of players, coaches, and fans, only to burst into tears when a schoolkid calls him fat. It’s almost as if I’m only capable of managing steady, stable pain. The unpredictable spikes of acute pain seem to upset the delicate balance of tolerance and management I’ve established over the years.

I started a pain management program at the University of Minnesota. It follows the interdisciplinary mindfulness-based curriculum developed by Jon Kabat-Zinn and his colleagues. I didn’t have high hopes for the program, but I’ve been pleasantly surprised by all the ways it’s defied my expectations. I’ve learned a lot about the physiology of pain, some of which I’m pretty shocked to have been hearing for the very first time, this far into the process. And I’ve worked with the pain psychologist there to start unraveling the messy relationship between pain, guilt, self-worth, and unreasonable standards. There’s a lot of work left to do, but I’m better now at staying in the moment with pain, rather than shoving it down and away to keep pushing through with what I think “needs to get done.”

Because of a snag with renewal, we’re currently uninsured, and that’s causing all sorts of problems, including having to go off all of my maintenance meds rather abruptly. While I’m very anxious about the potential for a depression relapse, one thing I feared hasn’t really happened: I’m not in a ton more pain. It’s still more than I can manage with just heat packs and ibuprofen, but I’m not laid up the way I have been in similar circumstances in the past.

This prompts a question: do I remember who I am when I’m not hurting? I’m not the same person I was before that car accident and all the things it precipitated. I haven’t been a married woman without pain. I haven’t been a mother without pain. I can’t say I’m afraid to step out from behind it, like a person who’s worn glasses their whole life faced with the option of corrective surgery. But it’s intimidating to realize that most of the important people in my life haven’t known me without pain. How would any of them treat me if it just weren’t there anymore? Would they be as forgiving, as willing to accept it when I have to say no to something? Would they require more of me, to make up for the years when pain gave them short shrift? Will they be disappointed in how many problems don’t go away, how many weaknesses turn out just to be me, not the pain?

It would be the biggest surprise of all if turns out that I’m more comfortable with my pain than I am with my true self.


  • very thoughtful essay as always.

    I enjoyed your observation about stepping away from an element of ones physical being that has become part of ones development over many years. Even if something is a hardship, is it really possible to realistically imagine what life would be like now if such basic facts were different. I think that one of the Olsen twins said that she really doesn’t recommend child acting and that it was kind of a negative experience, but that she wouldn’t change it. Maybe an Olsen twin didn’t say that, but I hope she did cause that would make sense to me. Anyways, now that I’m getting older, I’m always trying to reimagine my past life, but everything always makes sense in it’s context. I can empathise with all the things that I was thinking back then, even though I’ve changed.

    • Even if this all retreated, and I somehow went back to the energy and pain levels of someone who didn’t have fibro, I’d still be grateful for the experience of having gone through this. I wouldn’t change that fact of my life at all. Just like all the other events that have left their marks on me over the years, I wouldn’t be who or where I am if I hadn’t had them, and so much is good and right that it’s worth that cost. I knew that when people used to ask me if I would take back the sexual assault if I could; I know it now. Pain is an amazing teacher, as I know you know too.

      Now, honestly, I don’t think the fibro’s “going away” or anything like that; I’ve gone through cycles of more and less pain before. Part of what I’m trying to learn right now — with my depression as much as my pain — is not to live in so much fear of when it’s going to come back that I waste all the time it’s not here right now. Terror is a big part of my experience of pain, so I’m trying to learn from that as much as I can. I’ve told doctors and friends before that I can put up with almost infinite pain if I can see that it will come to an end at some point; not knowing that there’s any relief coming is the one thing I’m really bad at. But there are lessons in that, too, so I’ll keep paying attention.

      And I really hope it was Mary-Kate who said that. I always liked her best.

      • You, Jessica, are the gift that just keeps on giving to me this week. I love your post. You are in such a different place with your fibro experience than I am, and I am deeply grateful for the depth of that experience, and the unexpected delight of your ability to articulate it so that I can both recognize myself and feel gladness for your different contribution. I very much hope we will become friends.

        Here are my thoughts on my fibro experience just a week or so from your writing this…

        • I’m feeling pretty blessed too — I love it when I find someone who makes me feel a little less abnormal. 🙂 My fibro road has been pretty atypical, but if there’s any advantage to having been at this for so long, it’s that maybe I’ve got a little accumulated knowledge and perspective that might help someone else find the thing that works best for them. And thanks so much for the link; I’ve been working my way through your blog, a post or two at a time, but this saves me a little searching!

          • In one post I say:
            “Nothing is worse than being mauled by a tiger. I reserve my ten for that.” Doctors think I’m crazy. 😉

          • You’re totally not (at least not for that:) ). Sometimes, just knowing that you’re not in the worst possible pain is enough to keep you sane for one more second.

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