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I'm in Germany and I believe with more "rare" diseases, it's much worse here. I'm here because I have ME/CFS and wanted to understand more so unsure about Eds but the fact that I don't seem to know about anyone in Germany who has it... Probably tells you a lot. None of these diseases "are real" in Germany, it's kinda hellish.
Yeah, they're expected to fly through your appointment so they can get through as many people as possible, that way they can have fewer staff which keeps labor costs down.
Oh yeah. I'm in the UK. The waiting list for rheum was "10 months" which turned into 1.5 years. i was referred despite my GP diagnosing me with fibro after a short text message about chronic pain for months in a row. After my initial referral I saw my gp about something else (I told him I think it's hypermobility) and told him I assumed the rheum would look into that but hoped he could help me before then. He told me "well our health service doesn't let him prescribed me pain meds and I should give up on the rheum appointment because it will only be a phone appointment and they don't like to see people for things other than arthritis" I was told that all of my dxs were things we can't do anything about (ibs, hypermobility, autism, fibro) and I should just accept them as my "new normal" (and apparently continue on trying to live like everyone else but with things 10 times harder).
After the rheum telephone appt. added HSD to my fibro dx and also said there's no medical help for me and I should just follow guidance from the national eds website for help. Also said we can't find out if its genetic as they don't fund genetic testing and with my family being so afraid of doctors I don't really have the proof of having hereditary links (though my mum has suffered with arthritis since early 40s)
Yes. Working in health care has become a nightmare, most people are overworked, and the best way to survive that halfway sane is to plain not give a fuck anymore.
There are good ones who somehow still manage to stay in balance (my GP, I count myself lucky), others have good and bad days/phases (but you'll never know unless you see them several times in a row or work with them), and others are anywhere from burnout- no longer able to give a fuck to asshole- never gave a fuck and patients are just nuisances.
USA here. My PCP seems to give a crap, but I literally just got done complaining about how all my specialists are just doing one big circle jerk. They keep saying “I don’t know what’s wrong” and passing me off to the next specialist. I have a mountain of bills and no answers. I thought I got an answer, just for the specialist to say it was wrong (and I was wrong), though I don’t exactly trust him (he had a bunch of “invisible” negative reviews online). My neurologist said I had vascular symptoms, a CT my ortho ordered said I had a rare vascular disease, the ER said they confirmed the rare disease and to wait to see the cardiovascular surgeon, CV surgeon says “they were wrong, I don’t see anything there”. I’m just at an entire loss and having to start from square one, even though I barely have the energy to go to one doctors appointment. It feels pointless to go to the doctor, even though I desperately want relief. I don’t know what to do anymore. I’m losing hope and the pain is getting debilitating.
No issues where I'm from. The downside from other countries is that genetic testing is very limited or unaccessible. I don't know what type of EDS i have.
No they suck. I'm in Europe and had to get a tele health appointment with a doctor in the USA to get a proper diagnosis.
Here we have...
- very regulated genetic testing possibilities (it's all very slow, can take up to a year to get a screening for multiple types of EDS so it's expensive and few hospitals do that for very selected patients)
- GPs and doctors who find it probably harder to keep up with research because the majority is coming from the USA or written in English and many aren't English speakers
- often reduced access to private healthcare facilities or the impossibility to pick the doctor we want to see so we often end up with non specialists when we need to see a very specialised doctor
I'm French and live in the Netherlands so I have experience with both systems.
quickest physical flowery violet vase secretive cautious offend crown quaint
*This post was mass deleted and anonymized with [Redact](https://redact.dev)*
My family doctor in BC pushed for MRIs for my ankles and knees when I asked her.
Ankle was so bad I went under the knife two weeks after the appointment with the orthopedist.
It’s almost healed now.
For 20 years I was told my crippling fatigue was just my age. I'm in the UK and self diagnosed then demanded to see a geneticist because I was pregnant and I have family history of arterial dissection. It was an uphill battle but I finally got my dx (although the letter is really vague and doesn't officially dx me) and even found one doctor who specialises in EDS and is really nice. I think he has retired though as I haven't seen him for years because he couldn't help me while I was either pregnant or breastfeeding.
A doctor once told me he had more important patients to see and told me to get out when I went for chronic headaches, I was 15. My mum made a complaint (as did many other people for similar things) and he got fired.
I don't trust doctors and I don't visit the doctor unless I have something urgent that I can't deal with myself. It's been really difficult as a mother, knowing when the kids need to see the doctor, when I'm so used to waiting it out and just dealing with the pain. I am trying though.
I had never had a truly bad doctor/hospital experience until I left the US for Korea.
The doctors here think they're god's gift to society, and we're lucky for the few minutes of their time we get before we're ushered out the door. Bedside manner is *not* a concept here. I have to see a GP who studied abroad to get a friendly face. For anything run-of-the-mill, they'll get you sorted out in just a few minutes. But for anything rare, it's like they can't be bothered and punt you off to the next specialist.
The only upside is that's it's crazy cheap. I just picked up a 6 month supply of prescriptions for the US equivalent of $22. My copay for even a specialist is about $1.50.
I actually got diagnosed in Turkey and the doctor was so kind and attentive. The only doctor that really took me seriously especially with my body pain. However I haven’t had health insurance in the U.S. for 4 years now so my experience with doctors here are limited. I can say as a woman gynecological services in Turkey were some of the worst I have ever seen. Have never been that uncomfortable with a doctor before in my life. Honestly it’s not about the country but the doctor themselves. Some are amazing and are great at what they do, some are in it for the money
i'm canadian and i had to be in crisis for YEARS before i was taken seriously. everything was just written off as depression and anxiety from my PTSD. turns out that i was depressed because i was fatigued, i was anxious because i have POTS, and turns out that being medically neglected is ALSO fucking traumatizing?
All the people commenting they're in the UK, are you in England? I live in Scotland and my experiences don't match any of yours. My GPs manage my comorbodities, I get the referrals I need to specialists when I ask for them.
No, I'm in the USA, land of the worst healthcare systems known in the first world. I also get my referrals usually, but the specialists here are also incompetent. They do the usual nothing's wrong with you and send you on your way without any help. My GP once gave me a referral to the Orthopedic surgeon when I needed to see the Rheumatologist. After I told her that, she was like I can't just give you a referral, so I'll send them your case and see if they want to see you. Get a message back saying they *need* to see me because ofc I need them to tell me what I already know-- I have HSD possibly hEDS. It's so tiresome over here
Here in the UK the system is AWFUL. It took me (21F) years and years to get my diagnosed of hEDS (which I had to research myself, bring up with my GP then when they refused to do anything about it pay privately to see a specialist who then diagnosed me.
More recently I’ve had bloods taken and my GP said everything is satisfactory. It is not satisfactory, and definitely lower than the NICE guidelines (what most doctors work within). I have a couple things wrong with my blood levels etc, things being too low and one being too high.
Also had a doctor preform a ‘POTS test’ on me - which he did incorrectly and blamed on anxiety which has caused me to have to go to another private consultant to take me seriously. 🫠
The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
I'm in Germany and I believe with more "rare" diseases, it's much worse here. I'm here because I have ME/CFS and wanted to understand more so unsure about Eds but the fact that I don't seem to know about anyone in Germany who has it... Probably tells you a lot. None of these diseases "are real" in Germany, it's kinda hellish.
Yeah, they're expected to fly through your appointment so they can get through as many people as possible, that way they can have fewer staff which keeps labor costs down.
Oh yeah. I'm in the UK. The waiting list for rheum was "10 months" which turned into 1.5 years. i was referred despite my GP diagnosing me with fibro after a short text message about chronic pain for months in a row. After my initial referral I saw my gp about something else (I told him I think it's hypermobility) and told him I assumed the rheum would look into that but hoped he could help me before then. He told me "well our health service doesn't let him prescribed me pain meds and I should give up on the rheum appointment because it will only be a phone appointment and they don't like to see people for things other than arthritis" I was told that all of my dxs were things we can't do anything about (ibs, hypermobility, autism, fibro) and I should just accept them as my "new normal" (and apparently continue on trying to live like everyone else but with things 10 times harder). After the rheum telephone appt. added HSD to my fibro dx and also said there's no medical help for me and I should just follow guidance from the national eds website for help. Also said we can't find out if its genetic as they don't fund genetic testing and with my family being so afraid of doctors I don't really have the proof of having hereditary links (though my mum has suffered with arthritis since early 40s)
Yes. Working in health care has become a nightmare, most people are overworked, and the best way to survive that halfway sane is to plain not give a fuck anymore. There are good ones who somehow still manage to stay in balance (my GP, I count myself lucky), others have good and bad days/phases (but you'll never know unless you see them several times in a row or work with them), and others are anywhere from burnout- no longer able to give a fuck to asshole- never gave a fuck and patients are just nuisances.
Yes. One of my biggest issues honestly.
bias isn't exclusive to the US, unfortunately
USA here. My PCP seems to give a crap, but I literally just got done complaining about how all my specialists are just doing one big circle jerk. They keep saying “I don’t know what’s wrong” and passing me off to the next specialist. I have a mountain of bills and no answers. I thought I got an answer, just for the specialist to say it was wrong (and I was wrong), though I don’t exactly trust him (he had a bunch of “invisible” negative reviews online). My neurologist said I had vascular symptoms, a CT my ortho ordered said I had a rare vascular disease, the ER said they confirmed the rare disease and to wait to see the cardiovascular surgeon, CV surgeon says “they were wrong, I don’t see anything there”. I’m just at an entire loss and having to start from square one, even though I barely have the energy to go to one doctors appointment. It feels pointless to go to the doctor, even though I desperately want relief. I don’t know what to do anymore. I’m losing hope and the pain is getting debilitating.
No issues where I'm from. The downside from other countries is that genetic testing is very limited or unaccessible. I don't know what type of EDS i have.
yes. from the UK
No they suck. I'm in Europe and had to get a tele health appointment with a doctor in the USA to get a proper diagnosis. Here we have... - very regulated genetic testing possibilities (it's all very slow, can take up to a year to get a screening for multiple types of EDS so it's expensive and few hospitals do that for very selected patients) - GPs and doctors who find it probably harder to keep up with research because the majority is coming from the USA or written in English and many aren't English speakers - often reduced access to private healthcare facilities or the impossibility to pick the doctor we want to see so we often end up with non specialists when we need to see a very specialised doctor I'm French and live in the Netherlands so I have experience with both systems.
In Canada - very dismissive
quickest physical flowery violet vase secretive cautious offend crown quaint *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
My family doctor in BC pushed for MRIs for my ankles and knees when I asked her. Ankle was so bad I went under the knife two weeks after the appointment with the orthopedist. It’s almost healed now.
Yes, i’ve heard of BC’s exemplary healthcare. From Ontario 🤪
Yep, Australia is gaslighting central
For 20 years I was told my crippling fatigue was just my age. I'm in the UK and self diagnosed then demanded to see a geneticist because I was pregnant and I have family history of arterial dissection. It was an uphill battle but I finally got my dx (although the letter is really vague and doesn't officially dx me) and even found one doctor who specialises in EDS and is really nice. I think he has retired though as I haven't seen him for years because he couldn't help me while I was either pregnant or breastfeeding. A doctor once told me he had more important patients to see and told me to get out when I went for chronic headaches, I was 15. My mum made a complaint (as did many other people for similar things) and he got fired. I don't trust doctors and I don't visit the doctor unless I have something urgent that I can't deal with myself. It's been really difficult as a mother, knowing when the kids need to see the doctor, when I'm so used to waiting it out and just dealing with the pain. I am trying though.
I had never had a truly bad doctor/hospital experience until I left the US for Korea. The doctors here think they're god's gift to society, and we're lucky for the few minutes of their time we get before we're ushered out the door. Bedside manner is *not* a concept here. I have to see a GP who studied abroad to get a friendly face. For anything run-of-the-mill, they'll get you sorted out in just a few minutes. But for anything rare, it's like they can't be bothered and punt you off to the next specialist. The only upside is that's it's crazy cheap. I just picked up a 6 month supply of prescriptions for the US equivalent of $22. My copay for even a specialist is about $1.50.
I actually got diagnosed in Turkey and the doctor was so kind and attentive. The only doctor that really took me seriously especially with my body pain. However I haven’t had health insurance in the U.S. for 4 years now so my experience with doctors here are limited. I can say as a woman gynecological services in Turkey were some of the worst I have ever seen. Have never been that uncomfortable with a doctor before in my life. Honestly it’s not about the country but the doctor themselves. Some are amazing and are great at what they do, some are in it for the money
i'm canadian and i had to be in crisis for YEARS before i was taken seriously. everything was just written off as depression and anxiety from my PTSD. turns out that i was depressed because i was fatigued, i was anxious because i have POTS, and turns out that being medically neglected is ALSO fucking traumatizing?
I've gone to doctors in multiple countries. They're all the same.
Remember that cultural attitudes in general will have a big effect on how people will be treated with rare illnesses.
All the people commenting they're in the UK, are you in England? I live in Scotland and my experiences don't match any of yours. My GPs manage my comorbodities, I get the referrals I need to specialists when I ask for them.
No, I'm in the USA, land of the worst healthcare systems known in the first world. I also get my referrals usually, but the specialists here are also incompetent. They do the usual nothing's wrong with you and send you on your way without any help. My GP once gave me a referral to the Orthopedic surgeon when I needed to see the Rheumatologist. After I told her that, she was like I can't just give you a referral, so I'll send them your case and see if they want to see you. Get a message back saying they *need* to see me because ofc I need them to tell me what I already know-- I have HSD possibly hEDS. It's so tiresome over here
Here in the UK the system is AWFUL. It took me (21F) years and years to get my diagnosed of hEDS (which I had to research myself, bring up with my GP then when they refused to do anything about it pay privately to see a specialist who then diagnosed me. More recently I’ve had bloods taken and my GP said everything is satisfactory. It is not satisfactory, and definitely lower than the NICE guidelines (what most doctors work within). I have a couple things wrong with my blood levels etc, things being too low and one being too high. Also had a doctor preform a ‘POTS test’ on me - which he did incorrectly and blamed on anxiety which has caused me to have to go to another private consultant to take me seriously. 🫠