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.
This helps. It helps when people speak up and say “yes, I believe you.” It’s why I desperately seek interaction with other people as much as I can. Being alone with my thoughts only leads to masochism and a tattered sense of self, and I know I need to be able to remain strong and confident, kind to myself, and ruthless in my self-advocation. In a few days, I will have to take back up the megaphone and fight again. It’s good to know my loved ones believe in me and are behind me 100%. Not everyone is so lucky; I’m blessed, and grateful.
I have to admit: I have always had a deep fear of neuralgia, for exactly this reason. “There was never yet the philosopher that could endure the toothache patiently”: the pain is very real and does not go away because you wish it. “Reality is that which, when you stop believing in it, doesn’t go away”.
There is a world of difference between neuralgia and Münchausen. It is difficult to tell from the outside, but it’s not unfalsifiable or purely subjective. The difficulty of the falsification has long made doctors suspicious, and you’re probably even right to ask the question of yourself, but I know you and I know how hard you’ve worked physically.
I don’t know how much it helps that I know, except that the same reason I know means that you can look a doctor in the eye and say not merely convincingly but with authority what is going on.
You don’t have the M word. It’s painful to think that you are even entertaining that possibility. Stop! You have a real injury that causes you real pain. Comparing yourself to others does not serve you or anyone else. You are who you are, a sacred Being. Maybe someday doctors will figure out why you suffer so greatly. Right now you know and I know that we are members of an unacknowledged group who frustrate doctors because we fit in none of their diagnostic boxes. Yes, sometimes I feel like an alien. But I know that there are likely thousands, even more, who don’t fit neatly inside the current boxes. In the meantime we wait out our outsized pain not knowing how long it will last.
You are going to be okay. It is essential that you be kind to yourself at all levels. None of this is your fault. Treat yourself as you would treat a dear friend. Be your own best friend. You are going to be okay.