I didn’t feel I could speak my truth on social media, I was anxious every time I pressed post, even writing an email made me anxious. These were partly the effects of medical gaslighting.
Oh Madeleine, yes absolutely I have been medically gaslighted. The worst time was back in 1989, when I had a severe virus and took many weeks to recover. I was sent to an expert diagnostician who pronounced me perfectly healthy and who asked if I had broken up with a boyfriend or if I was stressed about exam s (!) I had taken the day off work, and decided I might as well have my annual optometry eye test as I passed their shop on my way home. After a few minutes of testing the optometrist asked: “How long have you been out of hospital? Should you be out & about alone? They should have warned you we wouldn’t be able to check your eye sight so soon after a major illness.” Accoeding to my eye test that day, I was legally blind, because the muscles of my eyes were so fatigued they coud not hold focus and kept randomly focussing at different distances. Distressed, I apologized and assured him I wasn’t doing it on purpose and I would try harder. He was shocked and coaxed the tale of my recent medical histoey out of me. He told me that “the eyes don’t lie” and this was a syndrome they only ever saw in people who had or were newly recovered from a major systemic illness. He encouraged me to take a taxi home, rather than public transport, if I could possibly afford it. He also begged me to find another doctor. “You are sick and you need a doctor to be making sure you get better and don’t go back to work too soon.” Thanks to that eye doctor I am more resistant to medical gaslighting but I still dread it every time I see a new health professional.
Wow, what a story! That doctor is infuriating — ‘have you broken up with a boyfriend?’ Aargh. And what a nice experience with this optometrist, actually doing his job. I’m so glad it helped you become more resistant to medical gaslighting.
I wish more people had an experience of being recognised or believed . Its something to hold onto. I shudder to think wjhere I would be today without that.
Absolutely a victim of medical gaslighting, so much so that I put off going to the GP for as long as I possibly have, because I dread what they are going to come up with this time. As a trauma survivor also I have definitely distrusted myself so many times, and often find myself doubting my illness, my symptoms and my abilities as a writer, looking for validation more than I should. Recognising it helps, and knowing I am not alone helps too, thanks for your words 😃
Thank you so much for sharing ❤️🌸 I put off going to the doctors too — I even have a nice GP now, but the medical gaslighting is still so present in my memory I get a stress response every time I seek out my GP. It’s gotten better with time and with a good GP, but it’s still there.
I’m still working with shame I’ve discovered this year and only recently realised the connection with embarrassment.
So helpful to read of your story and insight and understanding to the depth you share.
I experienced medical gaslighting for 20 years and have adopted all the above healing practices. I love that your inner child has been lit up by the music you have been producing🙂 my inner child was ecstatic that I could articulate the extent of pain I had been suffering all my adult life -for the first time the other year, with the help of a pain scale I learnt from the migraine world summit. It was like she was dancing and shaking her bum in my face😆 the happiest I had ever seen her.
I’ve since learnt to validate all that i know to be true. And that my own validation is true for me it does not have to be true for someone else, even anyone in authority like a medical professional.
I learnt so much out about migraine through the agony of my own lived experience and in talking to other migraine sufferers that I learnt way ahead of the medical profession (eg that concussion caused the first of many violent and agonising attacks, cluster headache Is more common than we realise and affects people in different ways than is known). I trust in this now, it’s helped me strengthen the relationship I have with myself and the confidence in what I know to be true.
It was a mutual decision as I was signed off but I haven’t seen a specialist since 2019. It’s not a path I advocate - it’s not easier or better off and it shouldn’t/needn’t be this way - but no more gaslighting, no more retraumatising and no more fighting.
Shame is such a hard one to heal — I’m also still in the process. Wow 20 years! What a revelation re the pain scale, it’s difficult to truly articulate the extent of our pain, especially when we have lived with it for so long. I love your reflections as always and thank you for sharing 🌸❤️
Thank you for writing this, Madelleine. I have definitely at times been on the receiving end of what I’d call “low level” medical gaslighting. But the biggest incident I’ll never forget was in the early months of my 2020 COVID and long COVID days, when my longtime PCP ran the basic blood panel and did a chest X-ray and declared me “perfectly healthy” even though I was telling her that something was majorly wrong. When she tried to shrug it off, I asked her if this could all be lingering effects of the virus. She said to me, in a snarky tone: “Amy, your guess is as good as mine.” I was stunned. I wasn’t the one who went through years of medical school and decades of practice after that.
I decided soon after that she could not continue to be my doctor, and I left her without telling her. That is, until about nine months later when I wrote to her in the portal to tell her I had left her and why. She got completely defensive, saying she had only ever wanted the best for me. She claimed she referred me to a neurologist, which was a flat out lie. What she did was pull up some neurology notes from a 2018 visit to tell me that those results were normal. Why would that be relevant to a totally new set of symptoms in 2020 after a suspected COVID infection?
I am sorry that gaslighting doctors have contributed to any feelings of shame you’ve had. That is their real crime. It’s a terrible thing, to make someone question their own suffering and then question their own sanity. My feeling was I needed to leave that doctor before any of those internalized feelings could take root in me, because I knew I didn’t deserve to be treated that way, especially after being with her for about ten years with minor complaints/issues throughout that time. She should have known me better than she did.
Wow that’s horrific, and what a good thing you left! I’ve left so many doctors I can barely count them anymore. Thank you for sharing your experience ❤️🌸
Yeah, it definitely helps to have a PPO plan where you don’t need a referral to see a specialist. Makes it much easier to walk away and find someone else. Oh, and living in a suburban or urban area where there are actually choices among specialists. A lot of rural folks don’t have this privilege, sadly.
Thank you for writing this. As someone chronically ill and living with CPTSD, medical gaslighting became its own ongoing trauma that I only identified a few years ago. It took years to get each diagnosis, and through that I’ve learned to trust my instincts about my health and trudge through with self-advocacy. Still not easy, but I don’t question myself anymore, I question the doctors and medical system.
Yet again, I'm in awe at how seen and understood I feel after reading your words. "because deep inside you feel like it is your fault. There is a sense of embarrassment embedded in shame. I felt like I wasn’t really sick, like I was creating my own symptoms. I felt shame for even having wasted his time, embarassed that I wasn’t worth a doctor’s ear" – these lines particularly resonated so deeply (I'm running to read your other post about shame ASAP!). I also have found myself mentally cycling through those same questions – "Am I just exaggerating this? Am I creating my own symptoms?" – over and over and over through the past years. Thank you so, so much for this piece and for making me feel tremendously validated!❤️
I relate to this so much, medical gaslighting/ ableism in the medical community almost killed me. I relate to talking to my inner child through the helplessness. Thank you for your words. We as disabled people need each other's writing. It helps so much ❤️
Oh Madeleine, yes absolutely I have been medically gaslighted. The worst time was back in 1989, when I had a severe virus and took many weeks to recover. I was sent to an expert diagnostician who pronounced me perfectly healthy and who asked if I had broken up with a boyfriend or if I was stressed about exam s (!) I had taken the day off work, and decided I might as well have my annual optometry eye test as I passed their shop on my way home. After a few minutes of testing the optometrist asked: “How long have you been out of hospital? Should you be out & about alone? They should have warned you we wouldn’t be able to check your eye sight so soon after a major illness.” Accoeding to my eye test that day, I was legally blind, because the muscles of my eyes were so fatigued they coud not hold focus and kept randomly focussing at different distances. Distressed, I apologized and assured him I wasn’t doing it on purpose and I would try harder. He was shocked and coaxed the tale of my recent medical histoey out of me. He told me that “the eyes don’t lie” and this was a syndrome they only ever saw in people who had or were newly recovered from a major systemic illness. He encouraged me to take a taxi home, rather than public transport, if I could possibly afford it. He also begged me to find another doctor. “You are sick and you need a doctor to be making sure you get better and don’t go back to work too soon.” Thanks to that eye doctor I am more resistant to medical gaslighting but I still dread it every time I see a new health professional.
Wow, what a story! That doctor is infuriating — ‘have you broken up with a boyfriend?’ Aargh. And what a nice experience with this optometrist, actually doing his job. I’m so glad it helped you become more resistant to medical gaslighting.
Wowzers, I am so sorry to read you experienced this. Also, so thankful for the eye doctor who understood the extent of what he was dealing with.
I wish more people had an experience of being recognised or believed . Its something to hold onto. I shudder to think wjhere I would be today without that.
Absolutely a victim of medical gaslighting, so much so that I put off going to the GP for as long as I possibly have, because I dread what they are going to come up with this time. As a trauma survivor also I have definitely distrusted myself so many times, and often find myself doubting my illness, my symptoms and my abilities as a writer, looking for validation more than I should. Recognising it helps, and knowing I am not alone helps too, thanks for your words 😃
Thank you so much for sharing ❤️🌸 I put off going to the doctors too — I even have a nice GP now, but the medical gaslighting is still so present in my memory I get a stress response every time I seek out my GP. It’s gotten better with time and with a good GP, but it’s still there.
I’m still working with shame I’ve discovered this year and only recently realised the connection with embarrassment.
So helpful to read of your story and insight and understanding to the depth you share.
I experienced medical gaslighting for 20 years and have adopted all the above healing practices. I love that your inner child has been lit up by the music you have been producing🙂 my inner child was ecstatic that I could articulate the extent of pain I had been suffering all my adult life -for the first time the other year, with the help of a pain scale I learnt from the migraine world summit. It was like she was dancing and shaking her bum in my face😆 the happiest I had ever seen her.
I’ve since learnt to validate all that i know to be true. And that my own validation is true for me it does not have to be true for someone else, even anyone in authority like a medical professional.
I learnt so much out about migraine through the agony of my own lived experience and in talking to other migraine sufferers that I learnt way ahead of the medical profession (eg that concussion caused the first of many violent and agonising attacks, cluster headache Is more common than we realise and affects people in different ways than is known). I trust in this now, it’s helped me strengthen the relationship I have with myself and the confidence in what I know to be true.
It was a mutual decision as I was signed off but I haven’t seen a specialist since 2019. It’s not a path I advocate - it’s not easier or better off and it shouldn’t/needn’t be this way - but no more gaslighting, no more retraumatising and no more fighting.
Shame is such a hard one to heal — I’m also still in the process. Wow 20 years! What a revelation re the pain scale, it’s difficult to truly articulate the extent of our pain, especially when we have lived with it for so long. I love your reflections as always and thank you for sharing 🌸❤️
Thank you for writing this, Madelleine. I have definitely at times been on the receiving end of what I’d call “low level” medical gaslighting. But the biggest incident I’ll never forget was in the early months of my 2020 COVID and long COVID days, when my longtime PCP ran the basic blood panel and did a chest X-ray and declared me “perfectly healthy” even though I was telling her that something was majorly wrong. When she tried to shrug it off, I asked her if this could all be lingering effects of the virus. She said to me, in a snarky tone: “Amy, your guess is as good as mine.” I was stunned. I wasn’t the one who went through years of medical school and decades of practice after that.
I decided soon after that she could not continue to be my doctor, and I left her without telling her. That is, until about nine months later when I wrote to her in the portal to tell her I had left her and why. She got completely defensive, saying she had only ever wanted the best for me. She claimed she referred me to a neurologist, which was a flat out lie. What she did was pull up some neurology notes from a 2018 visit to tell me that those results were normal. Why would that be relevant to a totally new set of symptoms in 2020 after a suspected COVID infection?
I am sorry that gaslighting doctors have contributed to any feelings of shame you’ve had. That is their real crime. It’s a terrible thing, to make someone question their own suffering and then question their own sanity. My feeling was I needed to leave that doctor before any of those internalized feelings could take root in me, because I knew I didn’t deserve to be treated that way, especially after being with her for about ten years with minor complaints/issues throughout that time. She should have known me better than she did.
Wow that’s horrific, and what a good thing you left! I’ve left so many doctors I can barely count them anymore. Thank you for sharing your experience ❤️🌸
Yeah, it definitely helps to have a PPO plan where you don’t need a referral to see a specialist. Makes it much easier to walk away and find someone else. Oh, and living in a suburban or urban area where there are actually choices among specialists. A lot of rural folks don’t have this privilege, sadly.
Thank you for writing this. As someone chronically ill and living with CPTSD, medical gaslighting became its own ongoing trauma that I only identified a few years ago. It took years to get each diagnosis, and through that I’ve learned to trust my instincts about my health and trudge through with self-advocacy. Still not easy, but I don’t question myself anymore, I question the doctors and medical system.
So good you’ve come to a place where you question them and not yourself!
Yet again, I'm in awe at how seen and understood I feel after reading your words. "because deep inside you feel like it is your fault. There is a sense of embarrassment embedded in shame. I felt like I wasn’t really sick, like I was creating my own symptoms. I felt shame for even having wasted his time, embarassed that I wasn’t worth a doctor’s ear" – these lines particularly resonated so deeply (I'm running to read your other post about shame ASAP!). I also have found myself mentally cycling through those same questions – "Am I just exaggerating this? Am I creating my own symptoms?" – over and over and over through the past years. Thank you so, so much for this piece and for making me feel tremendously validated!❤️
I’m so glad it resonated, Tuli ❤️🌸
I relate to this so much, medical gaslighting/ ableism in the medical community almost killed me. I relate to talking to my inner child through the helplessness. Thank you for your words. We as disabled people need each other's writing. It helps so much ❤️
❤️🌸