This one really ruined my life. I'd assumed doctors were highly trained not to let their biases affect their medical judgement, so I believed them when they said there was nothing wrong with me. I genuinely thought that if I was normal, most people felt terrible all the time and I was somehow too morally weak to cope with it. Did so much harm to my body pushing on through as a result.
Same! I’m sorry this happened to you as well. It also ruined my life and ended my career. I did so much damage to my body pushing through because I was told to try harder, and then my injuries were dismissed or downplayed by healthcare providers. I even had a physiotherapist tell me that I only hurt because I wanted to hurt. Turns out an AC sprain. it’s now chronic and I don’t have use of my dominant arm. Sending you gentle zebra hugs 🦓🤗
Same. I was told it was fibromyalgia and the pain was misfiring nerves and to ignore it. So I'd repeatedly injure myself and not seek medical attention until I lost the strength to do self care, then the specialist would say I was in too much pain for it to be an injury and send me back to the doctor that told me to ignore my pain.
Most of my doctors, even the ones who work with EDS patients, still don’t take my pain seriously because I don’t respond emotionally. I’m too calm for them to believe when I tell him I’m in pain . My only doctor to take me seriously right from day one was my hip surgeon. I was referred to him by another surgeon because I was young and I didn’t have arthritis.. During my first appointment with the second surgeon, he asked me to show him what kind of movements made my hip hurt. When I was doing this, my hip didn’t really hurt, but then this thing happened that I call “ catch and release”, which is where it catches and then I fall over. This happened twice and I just laughed. When I managed to stand up the look on my face surgeons face was priceless. He was so shocked. He proceeded to tell me that my hip had just subluxed. He knows I have an extremely high pain tolerance and he takes me seriously when I speak up. I wish the rest of my doctors did this as well.
Woah! I’m on the waiting list to see an orthopaedic doctor for my hip pain, and the ‘catch and release’ really stuck a chord with me! If it’s not too invasive - would you mind explaining in more detail what happens when you experience this (and does the falling over happen every time?). When I’m flared, I get catch and release with every step but have managed to convince myself it isn’t subluxing because it’s only very painful (no falling) and at its worst I just can’t lift my legs to walk - would love to know what a real hip sublux should look/feel like!
@@sarahg2721 No problem. I don’t mind answering. 😊 What happens for me is that as I walk it seems to catch deep in my groin and I can’t easily move it. It feels almost like a wedge is jammed in deep in the anterior hip socket, kind of like putting a doorstop in the hinge of a door. It feels stuck so when I try to force it it feels like it gives out completely, and that’s when I “fall over”. What I mean by “fall over” is I basically fold at the hip as that joint seems to buckle.
This is so sad but so true. I have had issues with full dislocations since I was 9 months old, diagnosed with EDS at 10 years old, and then told that there was no way a child of my age could be in that much pain. Even in my 40s, doctors questioned if I wasn’t making up the pain!! So I have been hiding extreme pain for over 40 years. Just recently I finally found a decent PT who watched me dislocate in front of her, not make a sound, reduce it, and get up to go again. She said I have an extremely high pain tolerance (and made me stop to ice it). But my doctor is still blaming anxiety and writing “symptoms well controlled” on my chart when I say I am not having issues with anxiety. But not addressing the pain, dislocations, histamine reactions, falls, IBS issues, etc. Just going into a doctors office is enough to make one anxious and leaving without any help makes one depressed.
"Just going into a doctors office is enough to make one anxious and leaving without any help makes one depressed." PERFECTLY STATED! I agree 100%, it is a vicious cycle.
Thank you so much for advocating for our community Jeannie. I really hope that GPs and hospital doctors and ither healthcare professionals see this series and learn from it. I dont know why healthcare professionals deem it appropriate to gaslight their patients as this causes patients additional harm. It costs absolutely nothing to treat patients with love, compassion, dignity and respect. Xxx
This is a myth I really relate to and sadly have encountered many times. There certainly are some people who are just uninformed, but the medical offices should not be a place like that. I went to the rheumatologist, after an extremly long wait and he did not even physically examine my joints. He never even listened to me, but made up his mind before he even walked in the room I believe. When I read the after-care notes, it sounded like I was some healthy, fully-functioning adult that presented with "mild pain" that was verbalized by me the patient, not observed by him the Dr. How is pain even observed by a Dr. exactly? On a scale of 1-10, and I said an "8", does that equal mild pain? I felt really dismissed and they refused to look at me any further for a 2nd visit. Currently looking for a 2nd opinion....but this has all come after years and years of unexplained sprains & dislocations with GI, heart and skin issues!
I was referred to a rheumatologist in Hampshire who stated that I wasn't even hypermobile. She actually looked away when I bent my thumbs to my wrist. She scored me as zero. This was even after I told her my identical twin sister was diagnosed with hEDS...she actually said she didn't believe me. So I printed out my twin sister's two diagnosis letters (one from Prof Graham and the other from Prof Matthias) and took them to the hypermobility clinic in London where I was diagnosed with hEDS on the day. I apparently scored 7/9 on the Beighton scale...how can we fake our joints subluxing or dislocating or being hypermobile ???. I sometimes wonder what I would have done if my sister wasn't diagnosed...I most likely would never have known!
@@charlottestandage2765 Yes, it seems having your sister's diagnosis helped them to consider your symptoms. It certainly should not be necessary to ever "prove" our case when symptoms are present. The medical professionals must put aside their own feelings and look at the facts. I'm certainly glad you did receive a diagnosis but terribly sorry you had to go through so much to get there!
How about “It’s just your ASD and you need to just move more despite your pain. You just don’t know what normal training pain is because you are autistic” said to a teen girl, who was a blue belt in karate and a gym fan before things started to go downhill, and who does know the difference between how her muscles feel after a good workout and the pain she feels when her fingers/wrists/shoulders/ankles/etc feel out of whack and come back in place.
I've had pain all my life. My father called me a poser, a simulant. According to my parents, I demanded attention because all the attention went to my mentally handicapped brother. I learned to bear my pain alone and not to mention it anymore. When my middle son was diagnosed at the age of four, the pediatric neurologist said with one look at me that he got it from me. He also gave me the Beighton score, 8 out of 9. I still keep most of it to myself and I have the feeling that I am a simulant.
The frustration in your voice reflects the YEARS that all of us have endured comments like these. Thank you for putting a voice to it.
Yes, and I was being restrained!
@@JeannieDiBonHypermobility I can imagine. I picture you stomping your feet on the inside. 😉 😠
This one really ruined my life. I'd assumed doctors were highly trained not to let their biases affect their medical judgement, so I believed them when they said there was nothing wrong with me. I genuinely thought that if I was normal, most people felt terrible all the time and I was somehow too morally weak to cope with it. Did so much harm to my body pushing on through as a result.
I’m so very sorry to read this. It should not happen to anyone.
Same! I’m sorry this happened to you as well.
It also ruined my life and ended my career. I did so much damage to my body pushing through because I was told to try harder, and then my injuries were dismissed or downplayed by healthcare providers. I even had a physiotherapist tell me that I only hurt because I wanted to hurt. Turns out an AC sprain. it’s now chronic and I don’t have use of my dominant arm.
Sending you gentle zebra hugs 🦓🤗
Same. I was told it was fibromyalgia and the pain was misfiring nerves and to ignore it. So I'd repeatedly injure myself and not seek medical attention until I lost the strength to do self care, then the specialist would say I was in too much pain for it to be an injury and send me back to the doctor that told me to ignore my pain.
Most of my doctors, even the ones who work with EDS patients, still don’t take my pain seriously because I don’t respond emotionally. I’m too calm for them to believe when I tell him I’m in pain .
My only doctor to take me seriously right from day one was my hip surgeon. I was referred to him by another surgeon because I was young and I didn’t have arthritis.. During my first appointment with the second surgeon, he asked me to show him what kind of movements made my hip hurt. When I was doing this, my hip didn’t really hurt, but then this thing happened that I call “ catch and release”, which is where it catches and then I fall over. This happened twice and I just laughed. When I managed to stand up the look on my face surgeons face was priceless. He was so shocked. He proceeded to tell me that my hip had just subluxed. He knows I have an extremely high pain tolerance and he takes me seriously when I speak up. I wish the rest of my doctors did this as well.
Woah! I’m on the waiting list to see an orthopaedic doctor for my hip pain, and the ‘catch and release’ really stuck a chord with me! If it’s not too invasive - would you mind explaining in more detail what happens when you experience this (and does the falling over happen every time?). When I’m flared, I get catch and release with every step but have managed to convince myself it isn’t subluxing because it’s only very painful (no falling) and at its worst I just can’t lift my legs to walk - would love to know what a real hip sublux should look/feel like!
@@sarahg2721 No problem. I don’t mind answering. 😊
What happens for me is that as I walk it seems to catch deep in my groin and I can’t easily move it. It feels almost like a wedge is jammed in deep in the anterior hip socket, kind of like putting a doorstop in the hinge of a door. It feels stuck so when I try to force it it feels like it gives out completely, and that’s when I “fall over”. What I mean by “fall over” is I basically fold at the hip as that joint seems to buckle.
Wow. Thanks for sharing your experience.
This is so sad but so true. I have had issues with full dislocations since I was 9 months old, diagnosed with EDS at 10 years old, and then told that there was no way a child of my age could be in that much pain. Even in my 40s, doctors questioned if I wasn’t making up the pain!! So I have been hiding extreme pain for over 40 years. Just recently I finally found a decent PT who watched me dislocate in front of her, not make a sound, reduce it, and get up to go again. She said I have an extremely high pain tolerance (and made me stop to ice it). But my doctor is still blaming anxiety and writing “symptoms well controlled” on my chart when I say I am not having issues with anxiety. But not addressing the pain, dislocations, histamine reactions, falls, IBS issues, etc. Just going into a doctors office is enough to make one anxious and leaving without any help makes one depressed.
Yes agree. So sorry you’ve gone through this.
"Just going into a doctors office is enough to make one anxious and leaving without any help makes one depressed." PERFECTLY STATED! I agree 100%, it is a vicious cycle.
Thank you so much for advocating for our community Jeannie. I really hope that GPs and hospital doctors and ither healthcare professionals see this series and learn from it. I dont know why healthcare professionals deem it appropriate to gaslight their patients as this causes patients additional harm. It costs absolutely nothing to treat patients with love, compassion, dignity and respect. Xxx
Thank you. I hope they can watch these too because they can be so damaging.
Thanks for mentioning the growing pains. I’m partially hypermobile and so many of my symptoms were masked my them
Yes very common - and so many young people dismissed because of this blanket answer.
This could not have come at a better time. Thank you so much for giving us all the reality check that the world is too biased to give us
Glad this was helpful 🙏🏻
This is a myth I really relate to and sadly have encountered many times. There certainly are some people who are just uninformed, but the medical offices should not be a place like that. I went to the rheumatologist, after an extremly long wait and he did not even physically examine my joints. He never even listened to me, but made up his mind before he even walked in the room I believe. When I read the after-care notes, it sounded like I was some healthy, fully-functioning adult that presented with "mild pain" that was verbalized by me the patient, not observed by him the Dr. How is pain even observed by a Dr. exactly? On a scale of 1-10, and I said an "8", does that equal mild pain? I felt really dismissed and they refused to look at me any further for a 2nd visit. Currently looking for a 2nd opinion....but this has all come after years and years of unexplained sprains & dislocations with GI, heart and skin issues!
I’m so sorry to hear this
I was referred to a rheumatologist in Hampshire who stated that I wasn't even hypermobile. She actually looked away when I bent my thumbs to my wrist. She scored me as zero. This was even after I told her my identical twin sister was diagnosed with hEDS...she actually said she didn't believe me. So I printed out my twin sister's two diagnosis letters (one from Prof Graham and the other from Prof Matthias) and took them to the hypermobility clinic in London where I was diagnosed with hEDS on the day. I apparently scored 7/9 on the Beighton scale...how can we fake our joints subluxing or dislocating or being hypermobile ???. I sometimes wonder what I would have done if my sister wasn't diagnosed...I most likely would never have known!
@@charlottestandage2765 Yes, it seems having your sister's diagnosis helped them to consider your symptoms. It certainly should not be necessary to ever "prove" our case when symptoms are present. The medical professionals must put aside their own feelings and look at the facts. I'm certainly glad you did receive a diagnosis but terribly sorry you had to go through so much to get there!
“It’s growing pains” that bs put my healing back 7yrs they wouldn’t look at it properly till I was 20
Sorry to hear this.
@@JeannieDiBonHypermobility not your fault. You’re the 1% trying to wake people up to the truth. Keep doing you
God bless
How about “It’s just your ASD and you need to just move more despite your pain. You just don’t know what normal training pain is because you are autistic” said to a teen girl, who was a blue belt in karate and a gym fan before things started to go downhill, and who does know the difference between how her muscles feel after a good workout and the pain she feels when her fingers/wrists/shoulders/ankles/etc feel out of whack and come back in place.
Sorry to hear.
Before I got a diagnosis I kept getting told it’s cuz I’m getting older 🤦🏻♀️
I've had pain all my life. My father called me a poser, a simulant. According to my parents, I demanded attention because all the attention went to my mentally handicapped brother. I learned to bear my pain alone and not to mention it anymore. When my middle son was diagnosed at the age of four, the pediatric neurologist said with one look at me that he got it from me. He also gave me the Beighton score, 8 out of 9. I still keep most of it to myself and I have the feeling that I am a simulant.
So sorry to hear your experience.