You don’t belong here. That’s what keeps running through my head, around and around, rattling noisily like an old toy train on a short track. You’re not really disabled. Your injury isn’t that big of a deal. There’s nothing biochemically wrong with you that would explain your muscle inflammation and fatigue, so it must be your fault.
My fault. That’s what I keep thinking. All of this is my fault. I tried to make my body do what I wanted and I failed. Not for any discernible medical reason, just because I’m weak, physically weak, temperamentally weak, unable to deal with discomfort and fatigue. I never have been athletic, and it’s my fault for not trying hard enough, for doing things wrong, for being unwilling to push myself past a certain point of pain or exhaustion.
All of my blood tests came back completely normal. I was screened for each of the expected muscle disorders as well as the exceedingly rare ones. The rheumatologist told me the bright side is that I’m exceptionally healthy and there’s no reason I can’t exercise as much as I want. And, unlike the doctor from a few days ago, he was kind and gentle when he said these things to me. But it didn’t matter. Because what it meant was that rather than being the kind of person who was able to push herself to the limits of what her body would handle despite a muscle enzyme deficit, now I’m just someone who isn’t able, for some reason, to push her body as far as other people push theirs. The former is honorable, but the latter is suspect.
Between that and my humiliating experience at the pain doctor’s earlier this week, I have no idea what I should or shouldn’t be doing with my body any more. Normal blood panel notwithstanding, I was in an excruciating amount of pain yesterday after physical therapy, and not because I let them work me too hard. In fact, even sitting for a few minutes and waiting for the rheumatologist to come into the exam room caused me enough pain to upset my stomach (not that it takes much, considering all of the medications I’m taking). When he told me there was no reason I couldn’t exercise, I nearly burst into tears right there.
I felt as though I’d suddenly been unmasked as an interloper in an exclusive club, and just as suddenly, ejected from it. I don’t know where I fit now. Am I disabled or not? Do I have a serious injury or not? Is it taking so long to recover because, subconsciously, I don’t want to recover? Because my body feels so much better when I ask it to do so much less? Is that even relevant? I mean, doesn’t everyone feel better when they do less?
I don’t know what to do; I don’t know if I should even trust my internal signaling. Should I push myself physically or not? How much of my pain is “real” pain? How much is normal, post-muscle-exertion pain? How much is expected muscle and ligament strain, leftover from several months of incapacitation? I was stiff in physical therapy yesterday. Why? I can feel some swelling in my right shoulder today. Was that supposed to happen as a result of my exercises? Is that normal? What is normal? What does it feel like? How much pain am I “supposed” to be in?
I woke up covered in sweat and exhausted this morning just before 6 AM. I’d had a strange dream, of being in a dirty, abandoned lot with a group of homeless people. I was not one of them, I knew – and they knew – because I could get up and leave whenever I wanted, and they could not. We sang songs together anyway, my voice harmonizing beautifully with theirs; I have always been good at that sort of thing. I had a large canister of nuts with me and I distributed them around in handfuls, until there were none left. I did not take any myself. I even gave the canister to a man who asked for it. I left. I came back. We sang again. I was getting ready to leave again, pulling my jacket and keys from a corner, when I awoke.
Even though I am incapacitated, it seems that I am not, as far as evidence-based medicine is concerned, disabled. I can visit that place, and be accepted there with grace and kindness, but I don’t live there. I don’t belong there. But there was no other place to be, in my dream. I don’t know where I went when I left; the dream skipped that part.
If I don’t belong with the handicapped, then where do I belong? Because it doesn’t seem like I belong with healthy people, either, not with my easily inflamed muscles, my resulting susceptibility to injury, my exercise intolerance, and my months-long bouts of fatigue. My family doctor, who I’ve been seeing since I was an adolescent, believes that Momma Ape and I are unusually interoceptive, or more acutely aware of our physiological state than is normal, able to detect minute changes in internal states, including pain and exhaustion, that most people are not aware of.
Even supposing that’s the case, it doesn’t explain anything, nor does it suggest any potential solutions. There’s no doubt that Momma Ape has endured an injury cascade resulting in constant pain and some loss of physical function. There’s no doubt that a nerve entrapment occurred in my right shoulder. What remains clouded from view is why. Are we truly different from other people? In what way? We are already at the outskirts of current medical knowledge; any farther out and we will have exceeded them, if we haven’t already.
For now, all we have is the cold comfort that something is wrong with us, and it’s not something that you can see, test for, or quantify in any way with existing medical science. Just fragile. Easily injured, slow to recover. You just have to take our word for it. How can you tell the difference between people like us and those who exhibit Münchausen syndrome?
You can’t. And I can’t. Not even when it’s myself.