EDS, HSD, and Psychological Health - Dr. Alan J. Hakim
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- Опубликовано: 25 июл 2024
- Dr. Alan Hakim speaks at the conference in Edinburgh, "Psychological and Emotional Health - Living with EDS and HSD," with the presentation "EDS, HSD, and Psychological Health: What Do the Studies Tell Us?"
Transcript coming soon!
The lady who spoke up for her Son with ASD ❤😢just waking up to all this within my body and family. Thank you so much for these videos
Acceptance is the hardest part and remains my elusive unicorn...great information, thank you for this!
Can you please turn up the volume on this video? I can hardly hear anything.
When doctors treat patients the way they do what do you expect. The system also causes emotional distress and there is no excuse for the ignorance and lack of compassion showing by providers. I have a 12 year old who refuses to see drs ..
Yeah, that was my thought... I feel like I don't matter, not because there's something wrong with me emotionally, but because I continue to be treated like I do not matter and my suffering does not matter.
Volume is too low for me to hear so I'm gonna give up watching this, I don't know why I clicked it, I was looking through to figure out my own issues, which wouldn't be as upsetting if it mattered anyways but I finally, after years trying to figure out what's going on neurologically and causing me neurological events that are real and dangerous... Anyways, I figured if I had a good guess at diagnosis then when doctors inform me of what isn't wrong, I can give them a likely cause to make them rule out, but apparently it still makes no difference hahaha... It's great fun knowing no one cares, not even if it's their job! Hahaha!
I'm in Canada, started complaining about chronic pain when I was 17 (started experiencing symptoms at 14, but got worse at 17), and even now 8 years later, I'm still stuck waiting for one specialist after another who can't find anything. The connective tissue clinic wait list is about 2 years, so hopefully I'll get in this year, but I was told for some things like ADHD testing and rheumatology, it's 4 years wait. What do they expect us to do? I was able to do ADHD testing privately and it helped me finish my degree, but there are no private specialists that deal with hypermobility and chronic pain unless I go out of my province, at least a 4 hour trip to the nearest private clinic. It doesn't make any sense. My GP said we've already tried everything she knows to try (meds that stopped working or had side effects, she put me on all the wait lists she thought would help, I'm already seeing physiothereapists and an evidence based naturopathic doctor), so in my last appointment, she said that I could see a psychologist or an osteopath, and that's all she could think of. I used to like seeing doctors because it meant I could try something new that might help, or get some useful ideas, but it's not like that anymore. Not with the doctor shortage where most doctors burn out, and a lot of them don't even know what EDS is. They said just because I can't touch the ground or bend my wrist backwards, I can't have it, but those are the areas I deal with subluxions the most. It feels like my bones are a traffic jam and even though my range of motion appears to be somewhat standard, I feel stuck, and have lots of joints popping and needing to be mobilized about every week with a manual therapist.
Lack of compassion. We are just commodities that get sick, and have to be treated to make sure they get their share of tax money that year. This is what opened my eyes to the sick system that we are blind until we need it.
Thank you 🙏 so much to the speaker and to the society for this video.
Thank you. So validating.
I can't hear anything and my phone is at full volume.
Thank you for sharing this. ❤
Volume. I’m 65. I m giving up. Too hard to explain oneself and symptoms to people who are not willing to hear me. So, instead of just looking at my past medical records ( on paper, no computers then) to actually see yes, I’m diagnosed. All the doctors I see don’t see me.
I'm 25 and having the same issue, although I've already been waiting one year for diagnosis. No one looks at my records, no one looks up what EDS is when I said that 3 physiotherapists I saw think I have it, and the doctor looks at one issue at a time instead of seeing that all my chronic pain I've been complaining about for 8 years is probably connected to my allergies, nerve pain, joints getting stuck, POTS and ADHD. There's clearly something going on, but they don't have time or energy to look into it. There's one specialist in connective tissue disorders in my area of 1 million, so I'm really hoping I get in to see him this year as I got on the list December 2021. Other than that, it's just been going to physio about once a week, and seeing a science based naturopathic doctor who usually has some ideas that family doctors don't know about. At least he looks into things with his team, including a nutritionist, joint specialist, and a guy who works with those who have cancer and pain. That's been my only hope, I can't even work a normal job due to the pain and all the meds failed.
I'm on the edge of loosing my mind. Being called a hypochondriac, liar, addict. To be sent to a Dr that's a year away, while in pain, only to be told that they are the wrong Dr... To wait another six months to see another one.. to have subluxated joints, to be sent straight back to work, to get injured worse, then being called a dangerous worker... I gave up the cycle of perpetual pain and debt, I can't work, if I do I will probably dislocate something, and for the orthopedic to tell me to "exersize more" bro, I served three years, muscles are not an issue
Well the anxiety doctor
Is a product of Dysautonomia
You know your autonomic nervous system.
You can not help anxiety endured by POTS NHO.
Depression is a product of our physical pain n 50 million symptoms and sensations. And just listening to you is making me angry
We get adrenaline surges while lying in bed.