Yaaas! I always follow that up with. Ok can you please mark that down in my chart and sometimes if I’m feeling cheeky I’ll even ask for a copy of todays chart notes from my appt so “I don’t forget what we covered” and of course I ask for my research to be placed in my chart- the stuff I brought with me that is being denied. Lol
Thank you!! I'm impressed with your suggestion of having them put their dismissal of your concerns in your chart. The way doctors treat patients needs to change. A few times I shared information with them about medical gaslighting in the hopes of reaching them, but about 2 doctors I met with flat out refused to read the info, let alone treat me. This has been frustrating to deal with. People have died from medical gaslighting. This is why we need to get this stop.
I got my EDS diagnosis at age 64. All the years before I heard things like „such sorts of pain as you are describing do not exist“, „housewife-syndrome“, „In my first years at Medical School I also thaught I had all these diseases I was learning about“. Or they questioned me about my relations with my parents. And so on… As everyone else I had challenges and issues in my life and sometimes I wondered whether I was the only person who could not see the connection between my psychological strain and all my pop-up symptoms. Even after my diagnosis had been confirmed by several experts, a pain therapist at university hospital blamed me for seeking somatic explanations for my pain and accused me of depreciating her when I explicitly disagreed. Thank you very much for sharing your experience here and for suggesting a way to cope with medical gaslighting.
Excellent to state the long-term effects of medical gas lighting after 13:30 !!!! I recognized myself from that so clearly! I got so much validation and knowledge from it! Also, I am going to write a list of my symptoms with details and photos and post them to my doctor before my rheumatologist appointment. In that way they also can read the symptoms quickly and efficiently. I am struggling to get a diagnosis. All my symptoms are dismissed, even that they are VISIBLE on my skin. I am badly gas lighted. Very dangerous.
So many doctors telling me I'm fine, I definitely minimize the seriousness of my symptoms. Facial numbness, you're fine. Heart palpitations, you're fine. Sudden numbness of both fingers and toes, you're fine with no investigation at all. Last new symptom was servere light sensitivity. I ended up in Emergency due to Covid closure of optometrists, expecting to be told I'm fine. Nope, dry eyes and loose corneas. 3 months later I'm still going to the Eye Institute for follow ups and am still dealing with light sensitivity.
That’s so scary! I cannot imagine something of that nature regarding my eyes! I hope the continual visits are helping! Thank you for sharing your story. It’s sad that your experience and my own is so common. It shouldn’t be!
I love your idea about having them mark these things in your chart. I've seen it recommended to ask doctors to note in your chart tests that they were unwilling to run as well. I have anxiety, depression, PTSD, and also... Eagle Syndrome. I see a psychiatrist and (usually) a therapist as well, and it's extremely frustrating when doctors assume I cannot possibly have a physical illness because I also have mental illnesses.
I have found it is helpful for me. I choose for myself not to challenge them anymore because it hasn’t helped for me but I get around it by having them note it so I can reference it in the future if I have a further complication. Lol. It seems to work. 💜
Thank you!! Currently dealing with this issue. I have lost a great deal of hand mobility waiting for a specialist. I'm in Canada, so shopping around for a doc isn't possible here really.
This is a really good idea about presenting concerns and asking the provider to write down the concerns and what hasn’t been addressed. I’m fortunate to have affordable health insurance but unfortunate to have crummy health insurance. I asked the hospital to switch my provider because i was feeling i was being medically gaslit but was matched with an equally uncaring provider. Lol.
I've had a rheumatologist shrug his shoulders and roll his eyes at me. I also had to diagnose my EDS - thank god for the internet! I'm now waiting to see an EDS consultants at one of only 2 specialist hospitals in the UK . I'm 46.
I experience gaslighting even with the diagnosis and now they will take the only meds that help away , he barely listen to me. And labels me as addict and assumes i get a kick from the medications. He will put me back into disability. I have an 11 year old son and i need to function. Ist as if he is working against me in every way possible. When i come from him i feel suicidal. I can't build two medication at the same time. I was so happy i was finally able to build down the benzodiazepinen and have back up medication's. Now he's wants to take it both away in a rush. Why he don't give me the time. i feel labeled and not taken seriously at all. He only see drug addict and did is only because they never gave me a decent treatment. If i had a good treatment from the start i would not even need to build down the benzodiazepinen. Morphine is the backup meds. I just want the build down there benzodiazepinen after 7 years wich is hard enough. But i do know without the back up from morphine the benzodiazepinen will go up and i desperately want off them 😢
Just got diagnosed with hsd. I felt like the doctor who gave me the diagnosis finaly understanded me. But then again when i did have phone call with my regular doctor she continued the same matra that everything is ok and it's normal to have have hypermobility. It's funny that my physiatrist just told me before that my shoulder has got so many dislocations that there is propably some damage already done.
Thank you for eliquinting explaining this. Both myself and my son have experienced this before with my sons father as well as some medical professionals. We of course never went back to the medical professionals who treated us that way but unfortunately his father is not someone we can just brush off. Im not sure how to deal with his father's behavior.
Lots of great advice! Unfortunately where I live in Canada, you just can't doctor shop. Here, if you have a GP (family doctor), no matter how bad of a fit they are, you have to keep them. We have such a severe shortage of doctors here that we will never find a new one. And I'm not exaggerating. It's actually extremely depressing.
I’m so sorry this seems so insane to me! How is this even ethical?! As a therapist I would be in big trouble if I pulled that… doctors get away with murder.
It is a AMAZING how physicians can admit “oh yeah, that makes sense… but not for you”
Yaaas! I always follow that up with. Ok can you please mark that down in my chart and sometimes if I’m feeling cheeky I’ll even ask for a copy of todays chart notes from my appt so “I don’t forget what we covered” and of course I ask for my research to be placed in my chart- the stuff I brought with me that is being denied. Lol
I was diagnosed with Ehlers Danlos last year. I am fifty two now, and I had no clue I had this problem. I also have dealt with medical gas lighting.
Thank you!! I'm impressed with your suggestion of having them put their dismissal of your concerns in your chart. The way doctors treat patients needs to change. A few times I shared information with them about medical gaslighting in the hopes of reaching them, but about 2 doctors I met with flat out refused to read the info, let alone treat me. This has been frustrating to deal with. People have died from medical gaslighting. This is why we need to get this stop.
For me- this has helped a lot!!! I would love to hear your experience if you try it!
I got my EDS diagnosis at age 64. All the years before I heard things like „such sorts of pain as you are describing do not exist“, „housewife-syndrome“, „In my first years at Medical School I also thaught I had all these diseases I was learning about“. Or they questioned me about my relations with my parents. And so on… As everyone else I had challenges and issues in my life and sometimes I wondered whether I was the only person who could not see the connection between my psychological strain and all my pop-up symptoms. Even after my diagnosis had been confirmed by several experts, a pain therapist at university hospital blamed me for seeking somatic explanations for my pain and accused me of depreciating her when I explicitly disagreed.
Thank you very much for sharing your experience here and for suggesting a way to cope with medical gaslighting.
Excellent to state the long-term effects of medical gas lighting after 13:30 !!!! I recognized myself from that so clearly! I got so much validation and knowledge from it!
Also, I am going to write a list of my symptoms with details and photos and post them to my doctor before my rheumatologist appointment. In that way they also can read the symptoms quickly and efficiently. I am struggling to get a diagnosis. All my symptoms are dismissed, even that they are VISIBLE on my skin. I am badly gas lighted. Very dangerous.
I am so sorry you are experiencing this. I am happy you found something helpful and validating here. That’s what I hope for- nothing less-
So many doctors telling me I'm fine, I definitely minimize the seriousness of my symptoms.
Facial numbness, you're fine. Heart palpitations, you're fine. Sudden numbness of both fingers and toes, you're fine with no investigation at all.
Last new symptom was servere light sensitivity. I ended up in Emergency due to Covid closure of optometrists, expecting to be told I'm fine. Nope, dry eyes and loose corneas. 3 months later I'm still going to the Eye Institute for follow ups and am still dealing with light sensitivity.
That’s so scary! I cannot imagine something of that nature regarding my eyes! I hope the continual visits are helping! Thank you for sharing your story. It’s sad that your experience and my own is so common. It shouldn’t be!
I love your idea about having them mark these things in your chart. I've seen it recommended to ask doctors to note in your chart tests that they were unwilling to run as well. I have anxiety, depression, PTSD, and also... Eagle Syndrome. I see a psychiatrist and (usually) a therapist as well, and it's extremely frustrating when doctors assume I cannot possibly have a physical illness because I also have mental illnesses.
I have found it is helpful for me. I choose for myself not to challenge them anymore because it hasn’t helped for me but I get around it by having them note it so I can reference it in the future if I have a further complication. Lol. It seems to work. 💜
I need your help.
I’m struggling with an extreme case of medical gaslighting.
How do I contact you?
@@rolamahmoud8909 Whats going on?
Thank you!! Currently dealing with this issue. I have lost a great deal of hand mobility waiting for a specialist. I'm in Canada, so shopping around for a doc isn't possible here really.
Wow this is happening to me right now.its been happening my whole life.i have been profiled in the system . Thank u for covering this..
So sorry you can relate but I am glad you found us here!!! 💜
This is a really good idea about presenting concerns and asking the provider to write down the concerns and what hasn’t been addressed.
I’m fortunate to have affordable health insurance but unfortunate to have crummy health insurance. I asked the hospital to switch my provider because i was feeling i was being medically gaslit but was matched with an equally uncaring provider. Lol.
I've had a rheumatologist shrug his shoulders and roll his eyes at me. I also had to diagnose my EDS - thank god for the internet! I'm now waiting to see an EDS consultants at one of only 2 specialist hospitals in the UK . I'm 46.
Thank you! Thank you! Thank you! I really needed this today.
I’m so glad you found your way here! I am sorry you needed the video tho. I made the video bc I have needed it too many time. 💜🦓💜
I experience gaslighting even with the diagnosis and now they will take the only meds that help away , he barely listen to me. And labels me as addict and assumes i get a kick from the medications. He will put me back into disability. I have an 11 year old son and i need to function. Ist as if he is working against me in every way possible. When i come from him i feel suicidal. I can't build two medication at the same time. I was so happy i was finally able to build down the benzodiazepinen and have back up medication's. Now he's wants to take it both away in a rush. Why he don't give me the time. i feel labeled and not taken seriously at all. He only see drug addict and did is only because they never gave me a decent treatment. If i had a good treatment from the start i would not even need to build down the benzodiazepinen. Morphine is the backup meds. I just want the build down there benzodiazepinen after 7 years wich is hard enough. But i do know without the back up from morphine the benzodiazepinen will go up and i desperately want off them 😢
Just got diagnosed with hsd. I felt like the doctor who gave me the diagnosis finaly understanded me. But then again when i did have phone call with my regular doctor she continued the same matra that everything is ok and it's normal to have have hypermobility. It's funny that my physiatrist just told me before that my shoulder has got so many dislocations that there is propably some damage already done.
Thank you for eliquinting explaining this. Both myself and my son have experienced this before with my sons father as well as some medical professionals. We of course never went back to the medical professionals who treated us that way but unfortunately his father is not someone we can just brush off. Im not sure how to deal with his father's behavior.
Thank you for spending your time watching. Our care is so rarely adequate much less excellent.
Your story sounds so similar to mine
I’m sad to hear that actually. So sorry. 💜💜💜
Very inspiring ❤️❤️❤️
Lots of great advice! Unfortunately where I live in Canada, you just can't doctor shop. Here, if you have a GP (family doctor), no matter how bad of a fit they are, you have to keep them. We have such a severe shortage of doctors here that we will never find a new one. And I'm not exaggerating. It's actually extremely depressing.
I can’t imagine. I’m so sorry it’s so messed up
My Dr put in my records that my genetic counselors diagnosis was "ambiguous at best" and now refuses to speak to me about it at all. :(
I’m so sorry this seems so insane to me! How is this even ethical?! As a therapist I would be in big trouble if I pulled that… doctors get away with murder.
My care coordinator is looking for an eds aware doctor for me to change doctors now. I'm glad I found your channel thank you for sharing your story
well done.
Thank you so much.
supper.