As the world is starting to open back up and people are going out more and more for nonessential reasons, I have been trying to understand why I am reliving some traumatic feelings from seemingly out of nowhere. I think I figured it out today.
I know when my body is in pain, and after years of medical gaslighting telling me I couldn’t have been in pain, I tend to react strongly to gaslighting in any form. Lately there is a similar pressure saying that I am overreacting, that I am wrong, and that it is “not that bad” to go out. I am immunocompromised and I don’t want to go out and risk my health. I also have the benefit of many privileges which mean I don’t have to. There are now a few measures being lifted and more people are acting like this pandemic is pretty well done. Let’s be honest, though, people are going out more now because the novelty of staying home has worn off and they are bored, changing the narrative to fit them. We aren’t out of this yet, or at the very least, chronically ill immunocompromised people are nowhere near out of it. While witnessing this shift in the past few days I find myself reliving the specific type of emotional anguish that comes with doctors and therapists telling me my pain was “not that bad” when I knew without a doubt and told them over and over that yes, it was that bad.
Before I got my CRPS diagnosis, I was in unimaginable pain for years. I kept making appointments and seeing doctors who continued to downplay my symptoms. I was clearly not recovering from surgery and no matter how many pain meds I took, they were just barely helping. They did not know why I was in pain, but they didn’t try to learn either, so I was dismissed. The issue is that if any of these doctors knew about CRPS, they would have seen that I had almost every single indicator and presented as a classic case.
I can’t entirely fault them since it is a rare disease which they don’t see everyday, but did they really think that I would be so consistent in inventing and dramatizing the amount of pain I was consistently in for so long? For years?
I don’t believe these doctors were going out of their way to dismiss me (except for the unapologetically misogynistic one that only spoke to my partner about me when he was in the room for appointments.) I know they weren’t gaslighting me on purpose. They are stressed, especially the specialists, and there is only so much time they can look at my chart. Don’t get me wrong, I am thankful for access to doctors and for all their hard work. Even when I give them all of the benefit of the doubt I can muster though, I still know they dismissed my cries for help because of my gender and age. There is no other logical explanation.
Can you picture a man in his fifties, for example, going to his primary doctor and begging to see specialists, then seeing said specialists and complaining of serious and incapacitating pain for literal years, only for those doctors to ask him to “wait it out” or question how severe the pain really is? Hah! There is no way that man wouldn’t get every test available ordered on the spot. He wouldn’t even get so far as to need to beg to see a specialist because the primary doctor would have a few options at the ready.
Now can you imagine a woman in her early twenties doing the same thing? There is a reason why 70% of people with chronic pain are women. (Hint: it is not by chance.) Gender equality has come a long way but there is still a long way to go. This manifests in every area of our society and the medical world is not exempt, which can unfortunately be devastating to some women’s health.
Through all of this I have learned to be a better self advocate, sure, but there is still a lingering resentment on the fact that women need to put so much effort into being their own advocates in the first place. It adds yet another stress to the patient, and let me tell you; it is exhausting and confusing to try to explain how bad your pain is. If they don’t take you seriously, and they won’t, you need to keep explaining it, which leads to them thinking you are overreacting, which makes you need to keep explaining it, which leads them to think you are a hypochondriac, which makes you need to keep explaining it, which continues on like this until eventually you learn to be as forward and upfront as possible to demand your needs without taking no for an answer (so then somehow you are the asshole in the situation).
It is an exhausting cycle that just makes more work for everyone involved. I do understand maybe ruling out other issues by waiting to act in the first couple weeks, but what is the excuse for failing to act for years? Maybe we would be better off, oh I don’t know, say… listening to women?
I have a considerable amount of experience being medically gaslighted. Even so, it takes conscious thought to realize when it is happening and to act against it. All this talk of opening the communities up again has people acting like we are out of the pandemic and in the clear. It is starting to look like it won’t be the “cool” thing to do to stay home and self isolate anymore, so I need to remind myself that boundaries are a good thing and I don’t need to explain myself to anyone. Maybe you could use a reminder, too?