One if my doctors, one I’ve been seeing for years, always tells me how good/healthy I look. When I tell himhow dizzy I feel, he always responds with something like “But I see you sitting here, in shorts and looking all summer-y -I think this is the best I’ve ever seen you”. I already know, that I don’t look sick, unless you know me very well. Also I am great at masking, but I try not to do so at my doctors appointments. With this doctor, I get stressed days in advance. I have to make sure I’m not wearing anything “extra”, like nailpolish, jewellery or mascara - as he will use these things against me. It’s not that he doesn’t believe me, he does, kind of. But he doesn’t know how to help - I think he means well and is trying to “keep my spirits up” but I am not depressed and constantly telling me, that I don’t look sick, when I feel like hell and am using days worth of “spoons” just to be there makes me feel invalidated and if he doesn’t gaslight me at that particular appointment, I will start gaslighting myself.
Yeah those comments are very invalidating. I’ve gotten those too, and I feel gaslighted. I totally understand your strategy to ‘unmask’ when you go there, that’s a good strategy, although our words should really be enough.
I’m triggered by these exact same comments. As well as “it’s technically a benign condition” and “maybe you’re anxious”. I so wish doctors could understand that we’re struggling to adapt to a new and scary reality. Our health is gone and we have to re-learn how to exist in the world. We need compassion, support and solutions. Not dismissive quips (even if well intentioned).
On an unrelated note - have you ever tried magnesium lotion? I likely wouldn’t be strong enough to correct the deficiency but it might aid the cramping?
I’m the opposite - I hyper absorb magnesium through my skin so I got terrible diarrhea and arrhythmias from the lotion. It’s funny how different we all are!
One told me ‘to go lie in the sun love’ when in tears because of chronic pain. Another told me ‘not use big words I don’t understand’ when I was explaining PEM to him as he kept saying ‘I just needed to exercise.’ 🤦🏻♀️😡
Thank you for sharing this. I'd find those words invalidating too. Lack of sleep is so destroying! Especially when you have chronic illness in the picture. I too have experienced invalidation but more from therapists than doctors. Basically being told I'm fine and even that I no longer need the therapy service (um, I'll be the judge of that). When trying to talk about the impact of perimenopause I was told that if I still experience regular cycles there's nothing going on there. Anyone who looks even slightly into the topic would know perimenopause symptoms manifest in tons of ways!
When I was in high school my GP/family doctor told me to “pull up my big girl panties and go to school”. I’d been suffering for months with serious abdominal pain and constant nausea on top of the constant migraine that had started a couple years prior. I don’t remember if this was before or after I had my gallbladder removed.
Yeah, I have refused to see ever since. She deals with patients in such a rapid-fire manner that if your issue isnt textbook or everyday you’re shit out of luck.
My favorite was “Tell me again WHY you’re in a wheelchair??” After I just explained, in detail, my Long Covid, ME and other diagnoses. He made me feel like I was bed bound for years for no reason and I had no logical explanation for why I would require the extensive rehabilitation I was going to him for. He was a Physical Medicine & Rehabilitation doctor who had clearly never heard of ME. I know PT in general is dodgy for us but I developed contractures in both hips, so I have to see someone or else it’ll become permanent (if it hasn’t already).
I have the extraordinary privilege of not needing a referral to see specialists. These past 4.5 years of long COVID have taught me that there’s actually no harm in my pushing back on ignorant comments and then leaving and finding a different specialist. I also live in an area where most specialists are in abundance, and I can usually get myself to these appointments, so I recognize other patients have more at stake and this can’t always push back or just leave.
I recently had a cardiologist try to impress upon me the importance of getting my 10,000 steps in each day, and when I told him anything much above 1,500 steps was a busy day for me, he looked genuinely taken aback. I was there for long covid problems and my near-decade of ME was on the referral he had in front of him... 😐
I’m so sorry that happened. I saw my cardiologist today. He wants to get my slightly elevated cholesterol down and gave me a handout about lifestyle changes and added, “Ignore ALL the exercise recommendations, since you have ME/CFS.” That’s how it should be. Also wasn’t there research recently that showed women don’t get any health benefit beyond 7,500 steps?
I’ve had doctors and nurses say, “You’re otherwise healthy,” when I’ve been hospitalized. I usually answer with a clear, “No, I’m not.” and then pull out my medical history and medication printout. Someone who’s otherwise healthy doesn’t need two full pages of 10 point text to hand to health professionals!
Doctors keep telling me I’m young and healthy. Because my bloodwork is so good. Oh ya? I beg to differ. One of the days they’ll know what to look for and are they going to be shocked.
Ugh, yes, so infuriating and so real. I have had so many gaslighting doctors and medical professionals. The first doctor I went to when I got sick with Long COVID told me acupuncturists were "witch doctors" and functional medicine was the equivalent to "magic crystals." So much to unpack there I can't even begin. But even once I joined a practice that specializes in MECFS, I had someone tell me that the way to get past my post-exertiona malaise was to "just push yourself beyond your limit each day." Literally the opposite of what I should be doing. Thanks for sharing this and giving us this opportunity to vent!!
Stigma in health care is pervasive, especially for women. In the early days of my chronic pain care I felt discounted and that my doctors wrote off my pain as something minor I was catastrophizing.
I've been getting enough gaslight about the convulsions I suffer to heat my home for five years! It infuriates me when an idiot agent of the hospital tells me it's RLS. The *%$#@ it is! If anyone went through one minute of what I have to manage every day and night, it would have a different name, such as "You Want To Tear Your Goddamned Muscles Out Syndrome". The battle wages on.
One if my doctors, one I’ve been seeing for years, always tells me how good/healthy I look. When I tell himhow dizzy I feel, he always responds with something like “But I see you sitting here, in shorts and looking all summer-y -I think this is the best I’ve ever seen you”. I already know, that I don’t look sick, unless you know me very well. Also I am great at masking, but I try not to do so at my doctors appointments. With this doctor, I get stressed days in advance. I have to make sure I’m not wearing anything “extra”, like nailpolish, jewellery or mascara - as he will use these things against me. It’s not that he doesn’t believe me, he does, kind of. But he doesn’t know how to help - I think he means well and is trying to “keep my spirits up” but I am not depressed and constantly telling me, that I don’t look sick, when I feel like hell and am using days worth of “spoons” just to be there makes me feel invalidated and if he doesn’t gaslight me at that particular appointment, I will start gaslighting myself.
Yeah those comments are very invalidating. I’ve gotten those too, and I feel gaslighted. I totally understand your strategy to ‘unmask’ when you go there, that’s a good strategy, although our words should really be enough.
I’m triggered by these exact same comments. As well as “it’s technically a benign condition” and “maybe you’re anxious”. I so wish doctors could understand that we’re struggling to adapt to a new and scary reality. Our health is gone and we have to re-learn how to exist in the world. We need compassion, support and solutions. Not dismissive quips (even if well intentioned).
On an unrelated note - have you ever tried magnesium lotion? I likely wouldn’t be strong enough to correct the deficiency but it might aid the cramping?
Argh those are terrible comments! And so true, we need compassion, not dismissiveness. Yes, I tried magnesium lotion but nowhere near enough.
I’m the opposite - I hyper absorb magnesium through my skin so I got terrible diarrhea and arrhythmias from the lotion. It’s funny how different we all are!
Oh no that sounds aweful.
One told me ‘to go lie in the sun love’ when in tears because of chronic pain. Another told me ‘not use big words I don’t understand’ when I was explaining PEM to him as he kept saying ‘I just needed to exercise.’ 🤦🏻♀️😡
OMG that’s terrible. How rude and insulting.
Thank you for sharing this. I'd find those words invalidating too. Lack of sleep is so destroying! Especially when you have chronic illness in the picture. I too have experienced invalidation but more from therapists than doctors. Basically being told I'm fine and even that I no longer need the therapy service (um, I'll be the judge of that). When trying to talk about the impact of perimenopause I was told that if I still experience regular cycles there's nothing going on there. Anyone who looks even slightly into the topic would know perimenopause symptoms manifest in tons of ways!
Oh yes, perimenopause is so misunderstood. And I’ve also had invalidating comments from therapists too, it’s infuriating.
To clarify, the perimenopause comment was from a medical doctor.
When I was in high school my GP/family doctor told me to “pull up my big girl panties and go to school”. I’d been suffering for months with serious abdominal pain and constant nausea on top of the constant migraine that had started a couple years prior. I don’t remember if this was before or after I had my gallbladder removed.
Argh no! That’s both sexist and ableist all in one. So not ok!
Yeah, I have refused to see ever since. She deals with patients in such a rapid-fire manner that if your issue isnt textbook or everyday you’re shit out of luck.
Yikes!!
My favorite was “Tell me again WHY you’re in a wheelchair??” After I just explained, in detail, my Long Covid, ME and other diagnoses. He made me feel like I was bed bound for years for no reason and I had no logical explanation for why I would require the extensive rehabilitation I was going to him for. He was a Physical Medicine & Rehabilitation doctor who had clearly never heard of ME. I know PT in general is dodgy for us but I developed contractures in both hips, so I have to see someone or else it’ll become permanent (if it hasn’t already).
Oh no, that’s a terrible thing to say, especially after explaining already!
I have the extraordinary privilege of not needing a referral to see specialists. These past 4.5 years of long COVID have taught me that there’s actually no harm in my pushing back on ignorant comments and then leaving and finding a different specialist. I also live in an area where most specialists are in abundance, and I can usually get myself to these appointments, so I recognize other patients have more at stake and this can’t always push back or just leave.
Exactly, or don’t have the energy to push back.
For sure. I have definitely let some things go due to lack of energy. We’re the only ones whose nervous systems suffer from conflict.
Same here. I just don’t go back and find someone else, it is exhausting though.
It sure is
I recently had a cardiologist try to impress upon me the importance of getting my 10,000 steps in each day, and when I told him anything much above 1,500 steps was a busy day for me, he looked genuinely taken aback. I was there for long covid problems and my near-decade of ME was on the referral he had in front of him... 😐
Oh wow… so few doctors understand ME and LC, it still amazes me.
I’m so sorry that happened. I saw my cardiologist today. He wants to get my slightly elevated cholesterol down and gave me a handout about lifestyle changes and added, “Ignore ALL the exercise recommendations, since you have ME/CFS.” That’s how it should be. Also wasn’t there research recently that showed women don’t get any health benefit beyond 7,500 steps?
Now that’s the right way to handle this!
I’ve had doctors and nurses say, “You’re otherwise healthy,” when I’ve been hospitalized. I usually answer with a clear, “No, I’m not.” and then pull out my medical history and medication printout. Someone who’s otherwise healthy doesn’t need two full pages of 10 point text to hand to health professionals!
Grrr I hate that one too!
“Why do you think you have ...” um... probably because another medical authority diagnosed me?
Oh I’ve actually had another docto ask me this and I was completely stumped for what to say. I was sort of shocked by it. Now I know what to say.
I think I had no words at the time. I practiced at home in case it happened again. It did. 🙄
I honestly do not know what makes doctors say things like this. That person clearly needs to go home, go back to bed, and start the day again 🤦🏻♀️
So true!
Doctors keep telling me I’m young and healthy. Because my bloodwork is so good. Oh ya? I beg to differ. One of the days they’ll know what to look for and are they going to be shocked.
I hate the ‘but you’re so young’ thing. And yes, one day!
Ugh, yes, so infuriating and so real. I have had so many gaslighting doctors and medical professionals. The first doctor I went to when I got sick with Long COVID told me acupuncturists were "witch doctors" and functional medicine was the equivalent to "magic crystals." So much to unpack there I can't even begin. But even once I joined a practice that specializes in MECFS, I had someone tell me that the way to get past my post-exertiona malaise was to "just push yourself beyond your limit each day." Literally the opposite of what I should be doing. Thanks for sharing this and giving us this opportunity to vent!!
Aargh no that is such dangerous advice!!
I am so sorry this happened to you.
Thank you 🌸
Stigma in health care is pervasive, especially for women. In the early days of my chronic pain care I felt discounted and that my doctors wrote off my pain as something minor I was catastrophizing.
Urgh I’m so sorry this happened to you too, it’s terrible.
I've been getting enough gaslight about the convulsions I suffer to heat my home for five years! It infuriates me when an idiot agent of the hospital tells me it's RLS. The *%$#@ it is! If anyone went through one minute of what I have to manage every day and night, it would have a different name, such as "You Want To Tear Your Goddamned Muscles Out Syndrome". The battle wages on.
Aargh I’m so sorry they aren’t taking it seriously! That’s not ok.