This is after two and a half years of feeling like -absolute- shit with minimal improvements and no answers as to why, much less how to fix it, no matter how much I talk about it to my medical team. We're talking multiple naps a day, going to bed earlier than I want, waking up later than I want, and sleeping all day Saturdays. The fatigue has made me withdrawn and angry because I can't get out of my own way enough to do things that I want to do. I’ve gotten two and a half years’ worth of shrugged shoulders as to why I’m barely functional, along with variations of the following:
Yeah, pituitary suppression sucks. Just gotta live with it.
It’s not adrenal insufficiency.
Your hormones are fine.
It’s probably your vocal cord paralysis.
You just worry too much about this stuff when all you really need is patience and time to heal.
Try changing your diet and see if that makes a difference. Here’s a referral for a nutritionist.
Have you tried MBSR? You just need to lower your stress.
That’s the context we’re dealing with here. My doctors have hit all of the Medical Gaslighting Greatest Hits without a single fucking solution, while I'm over here questioning my entire life or if I should just give up and go on disability because I can't function. That's a legitimate question I've been asking myself over the past six months or so. ANYWAY. Continued dialogue.
New OBGYN: We can for sure put you on progesterone, and that’s going to fix everything you’re describing. Why didn’t you ask sooner?
Why didn’t I ask sooner.
Why didn’t I ask sooner.
Friends, the rage I felt swallowed me whole in that moment. I get that question a lot. A LOT. I got it from my neuro team, who were SHOCKED that I’d never seen any neuro doctor before at all in spite of having migraines for 20 years and a brain tumor so large that there is no way it was in there for less than a decade and a half. I got it from my neurologist when I told her I’d only ever taken either Tylenol or a barbiturate for migraines, or the shot in the butt when it got so bad I had to go to urgent care or the ER. I got it from my OBGYN-oncologist when I told him I was so relieved to no longer have periods so painful that they woke me up from a sound sleep. I got it from my endocrinologist who found the cancer. I get it from my PCP every time I wait until day 10 of being sick before coming in.
They all have these shocked looks on their faces as if they’re not complicit in this system that gaslights women at every turn, even when they find a problem.
I tried what I’ve always successfully done: Bracket and pivot. Bracket and pivot.
Except I couldn’t.
So, my response: You’re nice and I like you, and you’re about to have to deal with me for the next 10-15 years. I feel like I want us to start off on the right foot and so I’d like to give you some feedback, if that’s ok?
OBGYN: I mean, sure! I don’t get asked for my consent for feedback very much.
Me: Ok. That’s ridiculous and I’m very sorry about that, and also I’ve heard that question a million times and I absolutely hate it. I have been banging this drum HARD for the past two and a half years AND I WAS EVEN PROACTIVE AND ASKED ABOUT IT WHEN I WAS BETWEEN THE TIME OF MY HYSTERECTOMY AND GETTING MY THYROID OUT. Do you know how many doctor’s appointments I have in any given year? A lot. Do you know how many of them I see as an opportunity to bring this up and so I do? One hundred percent of them. I talk about this issue with any medical professional who gets in front of me. To ask why I didn’t talk about it sooner assumes that I’ve made no effort to make it known, which is entirely untrue.
OBGYN: Ok! Noted. And good point. It's nowhere in your chart that you've talked about this.
Me: I’m not surprised that this isn’t in my chart. If I was a doctor, I’d also have a hard time wording “patient reported persistent low energy, fatigue, and hypersomnia. Gaslit her out of conversation because I have no answers. Will continue to monitor.”
(She admittedly chuckled at that one.)
Yes, I monologued at a brand new doctor. Yes, she got the brunt of my reaction to the constant medical gaslighting. Do I feel bad? No. My medical rage had to come out somewhere, and who better than a medical professional who was in the very middle of a gaslighting attempt, rather than an unwitting person who doesn’t deserve it? Some would argue that she didn't deserve it either, and I see the point, AND ALSO maybe she shouldn't assume that her patients don't do their due diligence.
So I trotted out of there with a progesterone prescription. I started taking it a couple of nights later because I didn’t want it to interfere with the cortisol testing that I was having done. I started it Wednesday night and everything went fine overall. Thursday night I woke up with…let’s call it gastric distress throughout the night, and through most of the next day. I was eventually able to rally and get to work, but wow.
In between episodes of gastric distress, I cleaned my house. I got paperwork done. I functioned like a fully normal, grown-ass adult. I did laundry. I got myself going with minimal effort. I felt normal. I was totally floored.
Then I forgot to take it but also had a “can’t get out of bed” migraine. I think my body has finished its current revolt, so we’ll see how the next few days and weeks go. In spite of the fact that I felt like absolute shit for a few days, here’s a list of things that feel WAY worse:
1. Being constantly gaslit by my doctors
2. Questioning whether or not I can even function enough to practice
3. Questioning whether or not I should just give up and apply for disability
4. Strongly considering just giving up on getting medical care at all if the only things that happen are my time gets wasted and I get gaslit for the ten minutes I’m in front of a provider
5. Being angry literally all the time because I had a brain tumor and thyroid cancer that got missed for a long time because my doctors didn’t listen or were outright dismissive (yes, I'm looking at you, Dr. "I don't know what blogs you read") when I told them what I was experiencing and nothing has changed
6. Wondering what I’m doing wrong to feel this way when the actual answer is nothing and I’m powerless against a truly awful system that isn’t designed to genuinely help me and instead is invested in keeping me sick because that’s where the money comes from
Yup. I’ll trade ALLLL of that mess in immediately if not sooner for some gastric distress but feeling hugely better in general, please and thank you.
Also, instead of rage-quitting all medical treatment (which was a legitimate option at one point of peak frustration last week), I instead moved every single Boston appointment to the same week every year, so I’ll be taking a medical vacation the first week in March annually for at least the next ten years or more likely permanently. The last one I need to change is my Lynch dude, and if I can bag my annual colonoscopy in that same week (this probably won’t happen, but a girl can dream), AWESOME. Get it all done at once. This not only lowers my stress about my appointments overall, but then gives me one big huge dose of medical gaslighting instead of a bunch of little ones spread throughout the year, which I think will hugely improve my mental health if I don’t have to just bide my time between appointments and have that gross toxic hope that I’ll get a different answer. It also will help me feel a lot more normal, which is something I've needed for three years and didn't know it until I had the realization that this change was going to help with that. (Also a huge perk is that if I'm covered in ultrasound goop from my ears to my chest or I'm in an MRI machine, I'm unreachable, so that might be the first legitimate time I've taken off and set boundaries around work since my brain surgery.)
Speaking up helps. I’m really starting to come into this idea that I get to stick up for myself and it’s both ok and I’m not going to spontaneously combust if someone says or does something not ok to me and I say something. I don’t have to explode but I also don’t have to let it go.
Ok. I’m going to go for a walk now because I have the energy to and I feel like a totally normal human for the first time in three years and three days. Happy belated hysterversary to me.
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