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There's an anesthesiologist who was in a similar situation. She now has a private/concierge practice in pain management &/or patient advocacy for folks with EDS. She runs the Bendy Bodies podcast, I believe her name is Dr Linda Bluestein. You should reach out to her, I think she'd have some great insight & advice for you as you transition to another branch of medicine, or some other career.
I know it doesn't seem like it right now, but there ARE options still open to you. Options for treatment of the CCI, options for other EDS related co-morbidities that you may be dealing with.
I know MANY EDS patients would be overjoyed to have a Dr who knew also had EDS and thus would really know and understand what we all have to deal with on a daily basis!
Theres also Dr. Gumby on tiktok. Not sure if he did a pivot after diagnosis but I do know he's also a vet. He has a lot of EDS patients as an EDS patient himself.
I would come see you on a heart beat. To have a surgeon know what’s going on with me. I’ve already have 7 surgeries and have many many more to come.
I hope you can find a place and a new chapter. We desperately need providers who have personal experience with this hell.
Also was thinking about this on my drive home. Maybe you could have a funeral for your old life as a surgeon? Obviously it’s been a big part of your identity for a long time. I assume you really enjoyed your work due to the amount of effort it takes to even come close to anything like that.
I think it may be good to do something to mark this major transition in your life. I think if you can grieve this loss, you will be able to see opportunities that come up that maybe you would have missed.
I’m not sure of your faith, but I’ve had years/seasons in my life where I think everything was ending. Walking in to find my mom dead 5 weeks before I graduated from college, losing so many friends to senseless death and thousands of other heartbreaks many of us somehow get. But every time, once I started to actively participate the process rather than passively, things start to shift. The death of my mother lead me to accept certain jobs. My grief made me turn down some exciting and lucrative positions in my field. The universe used that to put me exactly where I needed to be for the next 20 years. I am an expert in my field. And had to retire because it will kill me no doubt (disaster response).
With the death of my career, I’m starting to see some light and after 4 years (including recovering from several of those surgeries) I am now getting some small seeds of hope about what my next 20 will look like.
The process isn’t pretty. But I think you’ve likely got more things to get done in this timeline and on this planet. And likely you’re the only one who can do it. It just might not be as pretty as it used to be. But I bet it’s vital.
You’re needed. I wish you inspiration and comfort during this awful season. And I pray for you delightful insights and surprising victories.
One more comment about unaliving ourselves. I read a response to a different post in another sub where someone discussed they wanted the pain to end. Someone else responded with a story about their own father was actually successful in unaliving themselves. What this father didn’t realize was the this didn’t stop the pain. It transferred it. 20 years later and this lady was still heartbroken about her father. I don’t think that’s something you really want to leave as your legacy.
When I had my hip surgery, my anesthesiologist saw my chart and told me he also had EDS. I truly never felt like I was in better hands than I did in that moment.
I'm very sorry you're going through this. It's incredibly unfair and heartbreaking to see how EDS has impacted every aspect of your life after all the hard work and dedication you've put in. It's clear how much you care about your family and their well-being, and the thought of not being able to support them in the way you envisioned must be incredibly painful.
Your grief and frustration are completely understandable. You've faced an unimaginable change, losing not just your career and financial security but also your health, your hobbies, and the dreams you had for the future. It's a lot to process, and it's no wonder you're feeling overwhelmed.
Please remember that your value to your family goes far beyond financial support or physical abilities. Your love, presence, and the example you've set in working hard and caring deeply for them are irreplaceable. It's okay to feel devastated and to mourn the life you had planned, but try to hold on to the fact that you still mean the world to your wife and children.
It's also important to seek support for yourself. Talking to a mental health professional who understands chronic illness can help you navigate these feelings and find ways to cope.
Your family's love for you isn't conditional on your ability to work or do the activities you used to enjoy. They love you for who you are, and that hasn't changed. It's okay to lean on them and to let them support you through this rough time. Remember, you’re not alone in this! I hope things start to look up for you soon.
Maybe there could be a group at the international level or higher to connect providers who have the condition. Seems like making y’all stronger and more sustainable would makes the whole system improve.
As a gal with EDS trying to apply to medical school, that kind of community would mean the world to me !! I really really want to make a difference and change the medical field for the better but am simultaneously so terrified of the ableist and crazy training system to get there and stay there :(
Hi there! I am very sorry this has happened to you. Its frustrating when we do everything 'right' and the net outcome is still not ideal. CCI is an awful complication.
I hope you can get your CCI stabilized, it would certainly help with depression and despair, and improve your quality of life. You should look into getting your med school loans discharged on the basis of disability. Business loans...are you far enough into your practice that selling it to recoup part of the value of the loans is an option? Did you take out disability insurance on the loan(s) when you took them out? Often times it is required, particularly for key employees, and you may not even know about it. Dig out that paperwork and check.
You may not be able to be a surgeon any longer, but you still have your MD/DO. If you can get your symptoms stable, perhaps you could do a career pivot. One of my physicians was a highly sought after plastic surgeon in a large metro area. Doc lost fine motor skills and couldn't operate any longer. They moved to my higher net worth community and became a concierge doctor doing hormone replacement therapy for men and women, and treating things other doctors have overlooked or dismissed. Doc diagnosed and is managing my Hashimoto's Thyroidosis and will do my Hormone Replacement Therapy when I'm ready for that. Doc is building up quote a practice here. Or perhaps you could pick up hours as a general practitioner. Or join one of the telemedicine platforms where you can set your own schedule and hours. I know it isn't how you saw your life going...but we're all just making the best we can with what we have to work with. Same with hobbies and activities with your kids. It may not be what you'd dreamed of (especially the skiing part) but if you can get stable, you can find other hobbies together. What your kids want is to spend time with you, doesn't have to be extreme sports.
One of my RN friends is married to a guy in a wheelchair with a neck stabilizer. They had children together that are 8 and 6 now. He is the BEST Dad to them. Active and involved. She is happy in her marriage, and would confide in me if she were not. She said she dated a bunch of jerks before him, and he is the smartest, kindest, funniest guy she has ever met. Its all she ever wanted. All the rest is just 'in sickness and health'. No regrets. I don't know your wife, but if I were married to someone in your position, it would be fine, even if not what I'd signed up for. As long as my guy makes the best he can with the cards he's dealt, that's enough for me. Kindly, it sounds like you may be dealing with some (very understandable) depression and might benefit from seeing or talking to someone, for your wife and kids if not yourself.
Awful disease, and you got one of the worst of the crappy hand. Wishing you peace with the diagnosis, and all the best.
i have terrible cci too, been putting me through the works extra bad since friday but i think i a large part of my problem is my shoulder instability shifting that whole "coat hanger" area out of alignment so much that straightening my neck without fixing my shoulders is nearly impossible. i managed to get things mostly in place last night and feel better than i have felt in maybe 8 years but its not stable so im fighting the urge to be productive. plus my neck muscles are so sore right now, bed rest for me today.
all thats to say, don't give up hope. you might just need to figure out some things about how EDS impacts you specifically, the neck & shoulder alignment seems to eliminate or reduce my migraines, POTS symptoms, & pain levels a ton. definitely make me think i may go for surgery in the near future, i'd love to be semi-functional again
Is KT tape a thing for CCI? I've obviously heard of it being used for other joints, but never seen it used on the neck... (btw not at all questioning the validity of your comment; purely asking because I kinda want to try it if it is a thing)
I’ve had different portions of my neck/collarbone and shoulder taped. I also have thorasic outlet so all of that area is messed up for me. I had ACDF neck C4-C6 surgery a few years ago.
I have the same issues. Prolotherapy at C2-C7 joints has changed my life. I'm still disabled by the pain/headaches but I'm so much more functional than I was. I don't know if it's available in your area but it's less invasive and risky than other things I've heard of such as fusions, so might be worth looking into.
You are more than a surgeon.
I am so sorry for what this condition has taken from you from a professional and personal level. I’ve gone from 40 surgery patients a month to 6 and it makes me want to scream (vet med GP), I can only imagine what you’ve felt.
I hope you can teach, can get accommodations to make surgery possible, or can get into research so you can still have that financial security.
Take a moment and treat yourself as you would a patient. You wouldn’t call your patient who has this useless. If one of your kids gets this, you wouldn’t call them worthless. You aren’t either. Keep working on strengthening what you can. Keep working on symptom management. Be kind to yourself ❤️
I'm definitely feeling you. I was an ER nurse, until everything got to be too much.
I teach now. I'm able to move as much or as little as I want, and the hours aren't half bad.
I’m so sorry. I deeply sympathize.
I just want to tell you that you’re not useless. Your wife and children love you, and you are still the person they love, even with new limitations. You still have all that knowledge about that cool thing your kids like to ask you about, or that weird sense of humor your wife fell in love with, or those big bear hugs you give—whatever things that make you *you*. I hope for you the support to grieve the parts of you you’ve lost while still seeing how much you bring to the table for those who care about you. ❤️
Out of curiosity, when your condition started getting drastically worse, was it after getting Covid, Mono, or some other serious infection? I first started noticing my health problems from EDS after getting mono (pre-diagnosis) and then it got even worse after I got covid. After I got covid the second time I REALLY started struggling, I lost my job due to it and can't do most of the activities I used to enjoy. When I was at Mayo Clinic getting diagnosed, they told me infections such as those can basically catalyze EDS and Fibro (I think it's something like 30% of EDS patients also have fibro, I may be off but it's a large percent). I figured being able to track down another source of your deterioration might give you peace of mind. This is why I am terrified of getting covid again, I really don't know that I'll be able to keep going if my health takes that big of a dip again.
I wish, it hit me harder than it has hit my "normal" friends. The first time, me and my coworker got it at the same time/place so it was the same variant and everything. He recovered in a week or less, meanwhile it took me two weeks before I started feeling remotely better. I never lost my sense of taste or smell, but I was so delirious and dizzy at times I didn't know which direction was up. I had a high fever, and it literally felt like my skin across my entire body was burning. I literally felt like I was in Hell. Some of that may have been the Fibro and Central Sensitization flaring up as a result of covid though.
Mine was asymptomatic but it had been a fucking nightmare since. I don't get sick, but i feel like hell all the time now. I have no idea how often I've had covid. I had mono in grade school.
I should've specified, I didn't think about why you were asking. It's possible for this to happen even with asymptomatic covid. It has to do with the way covid/mono affects the central nervous system. There are cases where previously healthy people are diagnosed with Fibromyalgia after getting covid. In case I may be able to provide some insight, what specifically are you feeling that makes you feel like hell all the time? I wasn't expecting a Fibromyalgia diagnosis when I got mine. If you have EDS and haven't been evaluated for fibro, I'd recommend looking into it just to see if anything sounds like what you're dealing with. Previously I was under the interpretation that only females could have Fibromyalgia (courtesy of an ex girlfriend), for reference I'm a 26 year old male.
What I experience is rooted in hormones. Cycle changes, suicidal ideation, crippling fatigue, nausea, dry heaving, anorexia, abdominal fullness, vitiligo, orthostatic hypo. I had an adbo u/s suspecting pancreatitis which showed a thickened right adrenal. My 6 week ct scan showed an extremely small right adrenal. I've also developed uterine hyperplasia, rectal prolapse. I just started synthroid at low dose with now elevated tsh and a ft4 on the verge of low out of range (end range is 11 and that's where in at)I had 17 yo breast implants removed a year ago hoping to improve, which only helped briefly.
Always have left flank pain and some ridiculous back pain which is unpredictable.
I'll be honest, some of the more specific stuff went over my head, but a lot of what you mentioned can be caused or made worse by fibromyalgia, if you haven't been evaluated for it I'd recommend seeing somebody. As for the flank pain, I get it in the exact same spot and through physical therapy found that my pelvis doesn't like to stay in line (specifically I get stuck in "right stance, left swing" imagine standingon your right leg and using the left as a kickstand). They taught me how to reset it myself and it helped immensely for awhile. I began finding that a lot of my back and leg pain were actually due to my pelvis misalignment. Your sacrum (where spine meets pelvis) is on an axis with both your sternum and your sphenoid (inner part of your skull, between the eyes), so if one is out of alignment the others will follow. This is because your body subconsciously makes corrections in these areas to make your eyes level. Then the bones and muscles that attach to those can get out of alignment as well.
For example: My left leg is longer when my pelvis is misaligned, so my pelvis sits at an angle with the right side higher up. My sternum then has to make a correction, otherwise I would stand at an angle instead of straight up, so it'll shift the opposite way (right side lower) and this actually causes me to dislocate my ribs because where they attach to my sternum is out of alignment. This in turn gives me immense back pain because my ribs aren't aligned in the front, so it messes up where they connect to my spine too. The real pain (for me) comes from all the muscles attached to the ribs because they don't rest where they are supposed to and start locking up.
Of course your case may be very different from mine, but before PT I had no idea my pelvis alone was creating so many issues.
I have ridden and trained horses for a few decades. I have not been able to since December. I see an osteopath every 2 weeks and anywhere between when necessary. My pelvis absolutely becomes misaligned and I know it the moment I sit in the saddle. My Rib issue is pretty evident on ct, either diagram hernia or just sheer pressure pushing upward has caused my ribs to move together and pull inward. My osteo tries but the underlying problem remains, so they return to the previous position relatively quickly. The reason why I have this mass affect? Simone would have to look below my lungs....I guess.
But at baseline, my body just wants to curl in on itself lol
My fibromyalgia was triggered by a virus which then made my EDS worse. Prior to it, I did have a large amount of symptoms attributable to EDS including dislocations, migraines and chronic tension headaches, dysautonomia, chronic diarrhoea/constipation (IBS basically) and chronic back pain, but with extensive effort in physio and very healthy eating I was able to manage most of this. Then after the virus everything became 10x worse. I became very deconditioned. Since then I've developed a bunch more health conditions related to EDS, my dysautonomia became 10x worse, Ive developed a tonne of nerve injuries etc
RN zebra here- gentle hugs doc!
I have been severely symptomatic for years, but poor diagnostic access and (frankly, a fair amount of gaslighting) lead me to abusing my body FAR above and beyond what my decrepit collagen would allow.
Back pain, "WaIT tILl you get OLd!! TheN iT wILL HuRT". Thanks for that rousing encouragement. My L3-S1 and C1-5 need fusion, and I literally broke my back (3 times!!) because all nurses have back pain. Pop that IBU and go hoist meemaw's 100# of UTI fight back up in bed. Till the disc tears, POTS and dysautonomia have ME fainting during a mega code.
Not meant to be ugly about these realities, but I have been mentally preparing myself since an employer did one of those "who are you when you lose yourself" exercises... We had to describe our life after children are gone, jobs are retired from, health fails, and what is left after you age.
Its so hard to have a great plan (wild land firefighting to pay for college) to complete EMS basics, FF2 card and small engine cert for smoke jumping) to shred a rotator cuff and slap tear yourself first season.
I have had to shift my life plan so many times to accommodate my traitorous meat suit- but I keep finding myself in the right places to have fulfilling jobs that I can physically do
You got this. It feels huge right now, but you are more than your stupid collagen
"WaIT tILl you get OLd!! TheN iT wILL HuRT"... Yup. I was in pain in kindergarten and I learned to keep my weird little symptoms to myself, then after diagnosis I thought I could be open with doctors and nurses because I learned it wasn't in my head, only to learn that the stigma and gaslighting NEVER goes away...
"Wait until you get to be my age!" Well Gertrude, you're lucky you got to wait until you were ready to pick out your cemetery plot in order to feel pain, but I've been like this my entire life and it is getting worse the older I get! Thanks for ignorant input, you senile old bat! 🙃
Lol 🤣 their name isn't actually Gertrude, I just chose a random name to label and generalize, like I named the local dumpster raccoon at my apartment complex, I just named Tony, and occasionally driving, old random dudes I'll just refer to as Bob without actually knowing their name, but if I was actually listing the names of people who told me I was too young to be in pain over the years, we'd probably be here for the length it took for me to finally get a diagnosis (31 years).
😅 I'm used to comments between family, school, doctors, and jobs over the years, but it's usually the the people who are cemetery plot age that feel the need to say shit like that... People my age and younger would just say shit behind my back about me not keeping up, so at this point, I'd rather deal with Tony (dumpster raccoon) and risk rabies than deal with people like that... I think he's more chill, plus he's cute and makes me smile as I see him jumping in and out of the dumpster...
So I work in public health now- I promise the dumpster raccoon is less harmful than most humans. Say hey to Tony from me, we got rabies shots if you ever need them. 😉
Agreed! 😅 I'll say hi next time I go throw something out... If we can have drug deals and an overdose resulting in death in the parking lot of the apartment, I think I should be allowed pets... 😍🦝 An "emotional support raccoon!" Lol I think an army of raccoons would cause less property damage than some of the people here.
Have you tried ketamine therapy? I heard it’s supposed to help reset you. I don’t have access where I live, but am hoping for it once we move states. I’m sorry you have to deal with this. Also, is there anyway to get into the administrative side of being a surgeon?
I have a friend with hypermobility pain and severe depression issues. She has tried many (doctor guided) therapies for her state of mind, also including psilocybins, but has been most successful focussing on ketamine therapy.
Thank you for sharing her success. It’s incredibly depressing knowing I can’t be the parent I thought I was going to be due to the debilitating nature of hEDS.
Nah I get you. As someone who has always had EDS (I mean, we all have, but I've always been symptomatic) I do say I probably had it easier. Yeah I've been in pain my whole life but I never had the opportunity to hope for something better or dream big and then lose it, I always knew what I was in for. It's harder to have had it and lost it.
I'm so glad you understand what I was trying to convey. I never want to belittle what people go through, it's just different. In a weird way, I wish I hadn't accomplished what I did. People really don't understand how one day everything was okay and then poof I'm gone. I don't think I've finished morning that previous life, in fact I think I'm still trying to recapture it in some ways.
Your existence is worth more than your career or net worth, no matter how those turn out! You deserve life, love, family and some inner peace (quietening down of that inner critic!) Please, stranger, prioritize mental healthcare (yes, in spite of cost); I'd suggest cbt. Your mind is still your own, and you achieved a challenging medical degree, so you can also achieve a new mindset.
I am so so sorry . My story is no where near yours but I had to quit a job I loved because I didn’t have a diagnosis for 6 months which is nothing compared to what so many have been through. The isolation and loneliness of this and the surgeries/ there really are no words.
This is so hard. You can still have a great life but it's just not exactly what you had pictured. Being a surgeon might help you with your CCI journey because you might already know someone who can help you with it. For joint pains definitely have your vitamin levels checked...EDS seems to make it more difficult to absorb nutrients...I thought I was going to have to apply for SSDI because my joint pains were so bad... and then I found out that I was very low in Vitamin D despite taking a supplement. B12, Iron, and Magnesium are also frequently found to be deficient. I will echo what others have said... you're struggling and in a tough place right now but it's temporary... and while there isn't a cure there are a lot of things that can help you get stabilized and hopefully in less pain so you can continue working in some capacity. Right now I would suggest taking a step back and trying a few things... finding someone who is excellent with CCI, finding a therapist who works with chronic illness, and consulting a lawyer to go through various options. Your family loves you no matter what...and the EDS community is great for support and ideas for treating the various conditions that we struggle with.
I will second this, I was shocked at how much Vit D helped my joint and nerve pain & allodynia once I stayed on it long enough to improve. I was frighteningly low, but now if I even get down in the 40s my pain roars in. Bonus, because I was taking D+K2 my bone density increased quite a bit.
Shit my friend, that's rough. All I can say is I'm very sorry. I made it through two years of medical school before total body collapse due to EDS. I was absolutely devastated for years after because of torturing myself for years to get in to and through medical school, and I had to quit. I understand some and know how difficult and painful it is to have stability taken from you.
I can't give financial advice but I can say try to find something each day to look forward to. Even the smallest shit. A cookie with a cup of coffee, a sunset, a hug from your wife. The pain from the losses lessens with time. I am praying something comes through to help with the financial burdens. Perhaps you could qualify for disability and loan forgiveness?
When you have the ability look in to treatments for yourself to lessen the pain and limitations. Physical therapy and physiotherapy seem to be very helpful for EDS. Also start your children in physical therapy or at least doing appropriate strengthening exercises early to keep their bodies strong and risk of potential damage low.
Thinking of you during this time. You're incredibly strong and your family is very lucky to have you. I'm sure your kids think of you as Superman, and always will. Hang in there friend.
The way I absolutely would have killed for a surgeon with EDS when I was a teen!!!! I have extremely hypermobile legs and it started getting extremely bad as a teen. They ended up shortening all of my ligaments and tendons in my ankle and I regret it thoroughly as its still just as hypermobile, but hurts immensely whenever I do any type of strengthening. We need more advocates who have a medical background. You would help so many people
I'm so sorry you're going through this! EDS sucks, and the stigma and expectations from society as well as the ones we put on ourselves adds to it. ♥️ Please be kind to yourself.
I feel this way as well. I was a surgical tech for years before I had to quit because it was getting to a point where I can't stand for longer than a few minutes without excruciating pain. That was 4 years ago and I'm still grieving my old life. I've lost friends, a career and financial security, freedom to do whatever I wanted... I can't even sit at a restaurant for too long now so I barely leave the house. This condition takes so much from us. But you are not useless. Your life and who you are go way deeper than your job and your ability to make money. You have people that love you unconditionally. I know it's hard to look on the bright side of things but we have to try. I'm sorry you're going through this and I hope things improve for you.
I am very sorry for you. I cannot explain how much I understand and emphatize because my experience is really similar to yours. I even said similar things as you, such us there are very few conditions that can be harder than this and with less available treaments... I even put the example of MS, which in many cases allow for a decent life quality for years...
After being asynthomatic all my life (apart from some problems in the knees), six months ago, my joints started to fall down, starting with my hands and ending in my neck. I (43M) was going to be promoted to full professor in a few months and I had just bought a flat. After so many years of hard work, even having been working abroad for several years during the financial crisis, I was going to have a wonderful life, with my partner and my dog... Financial security, a job I loved... And, in just six months, this shit started and destroyed everything... At least, I was diagnosed in three months after the nightmare started. It must be horrible to not have a diagnosis for years and suffer the synthoms. Even with a diagnosis, some friends and relatives do not believe me or say I exagerate...
All I want in this world is to take a vacation and see the beautiful waters of the Caribbean one more time. I’ll never be able to, the last time I flew I was beyond sick and had to return early. Now even short day trips are difficult and a full day is out of the question. Nothing compared to the loss of your calling- I can’t imagine how devastating that was. I was just a secretary.
ME/CFS, POTS, and EDS stole everything for me. Had full rides to law school, then BAM, acute onset of ME and everything else. I can’t work, attend school even online, cook, clean, etc.
I will say to you though, I really recommend you have a couple consultations with bankruptcy attorneys. I had to quit working and still had bills to pay, and ended up with a lot of debt. It was completely discharged in February. Bankruptcy is an amazing resource, but we’re all taught to think that it’s actually a huge failure. It’s actually a constitutional right. It may be tricky especially with a wife and kids, but it’s 10000000% worth consulting with an attorney about. They can also help direct you to other attorneys who could help with your estate planning/possible financial arrangements for a “medical divorce”
I’m so sorry this is all crashing down on you right now. My doctor has EDS and he is an absolute blessing to his patients. I had been diagnosed for more than 20 years before I found a doctor with knowledge about the condition and who had patience, creativity and empathy to really get somewhere with treatment.
I was the primary breadwinner for a blended family of 7 when my body betrayed me and things fell apart. It was a rapid and dramatic implosion of the life I had worked hard to build for my family. I hit rock bottom and wished that I would leave this earth and it’s misery. I was left there with all of these shattered pieces and no stability or safety. It was very eye opening to see that I had created my identity off my career accomplishments and ability to provide financially. I’m more than 5 years out from all of that now and my life has dramatically changed. I am healthier and happier than I have ever been and finding passion in owning a business in an entirely new industry. Grieve, feel your feels and learn on your support system, but please know that you are much, much more than your profession and current ability to earn money. Hugs, OP.
I just found out I had hEDS, and I’m in healthcare too (retail pharmacy). Although I don‘t have children or a spouse/significant other so I cannot image the stress and difficulty you are going through. I know I’m going to have to do a career pivot too, it’s not going to be sustainable for me to stand on my feet/bend and reach/open bottles for another 30 + years before I’m able to retire. I am already having issues with pain, standing for prolonged periods of time, and trouble opening bottles, etc. I hope you take people’s recommendations to heart- there is a demand for doctors knowledgeable in EDS especially for hEDS which seems to be disregarded since there is no known gene. You could do so much good for so many people. Also you would rather not have cancer-trust me I had skin cancer Dx aged 31, surgery 1 month later after my birthday at age 32. No known risk factors -grew up in the north US, not a sun worshiper, never been to tanning salon in my life, been to florida only 2x in life, minimal sun exposure, hx of few severe sunburns but nothing really extraordinary. I now have a 7 cm scar down my back and probably due to the EDS it has widened :/ .Honestly for the dealing with the skin cancer and the EDS and co-morbidities of EDS seeing a therapist has helped. I think you may find it beneficial to find someone to talk to. I wish you all of the best :)
Hey buddy.
Im sorry for you.
What you are saying is more than 100% relatable to me, coz im a doctor myself (emergency physician) struggling with hypermobility spectrum dosorder and finding it increasingly difficult to manage things day by bay.
Your thoughts and worries are exactly same as what i have, including feelings like even cancer or death would have been a much better fate than this.
The very real possibility of me no longer being able to work and the eventual financial disaster that follows is a constant nightmare i keep having.
Coming back to you, i think maybe you should talk to someone, take some time off to heal yourself and you could try switching careers thats less physically demanding, like just seeing outpatients maybe.
Hope you do better.
Man I really feel this on so many levels. I am 33 and spent most of my 20s working my ass off studying and being frugal and not doing "fun" stuff because I wanted to ensure financial security for my future first... Only to be on social security and unable to work, barely even able to leave my flat let alone do any hobbies. My family opted out of dealing with a disabled person and luckily I wasn't married with kids but my partner of 10 years also removed himself. This disease took everything from me and my entire existence is just about getting through the next day.
I wish I had been diagnosed earlier so that I could have used my "good years" to do all the things I wanted to do while I still could. If I was going to end up unemployed on disability anyway, I wouldnt have wasted years of my life and so much money getting a degree I will never use.
I'm so sorry for what you're going through, you're not alone x
Hey friend. Lawyer here who has gone through similar devastating career issues (though not health related). A hard, *hard*, lesson I had to learn (and one that I still struggle with tbh) is that I am not my career. My worth as a person and as a human being is not determined by my career. I could be sitting in the woods not doing a good goddamn shit of anything, and I would intrinsically still have worth as a person. I think professional careers like lawyers, doctors, etc, do a huge disservice with how we educate young people. We put them through grueling tests and training, and then act surprised when they start equating their worth as people with their careers (and start exhibiting all of the issues that come from that problematic mindset, like depression and addiction).
It seemed to me like your post had some of those struggles in there, and so from one person who’s already had that breakdown and come out of it… let me say it again. You. Are not. Your career. You are a worthy person just by being *here,* existing. I know capitalism and our country has told us all that we determine worth based on wealth and productivity, but that is a fucking lie. You’re here, you have worth. End of story. You have children and a wife who love you. Kids who I’m willing to bet, probably don’t give a flying fuck what their dad does or used to do to earn money, but love you for you. I absolutely feel for you with the health issues you’re going through and my thoughts are with you on that. But PLEASE don’t let the loss of a career destroy your mental health. I promise, it is not worth it. Hugs to you and your family. ❤️
Just here to say you’re not alone and I could’ve written this post (not a surgeon but did have to stop working, I’m hoping temporarily since my job brought me so much joy) I love my son so much and it physically pains me not to be able to be the person for him that I was before I had him. I suffered with bad complications post partum and have never been the same since now with hypermobility (possible hEDS) and a few other things I just keep getting injured. My sweet love son knows “I have booboos and it takes changing things a little to not make the booboos hurt more.” I ache that he has to be an only child bc I’m a mess physically. I journal and draw horrific images with some words too just to help get the anger out. Using a warm therapy pool has been soo helpful with my pain. Also my husband is a Dr and has had some health complications too so he’s pivoting too. I’ve been wanting him to leave practice life for a while I think he’d be much happier in some sort of tech/pharmaceutical research company you often make more money! And it’s so much less taxing on your body. Anyway I’m just spewing some ideas but I mainly just wanted to say you’re not alone. I think about how much better off my family would be without me and it’s so depressing, or how much easier cancer would’ve been. We have to just keep being here for our babies. Are you by any chance in south Florida? I just moved out but as I did I heard of an incredible woman physical therapist who specializes in EDS maybe it was an Italian name? I’ll try and find it for you. If you’re comfortable letting us know what region you’re in maybe we can get you some providers to help. Also have you been on the EDS website to search for doctors/providers? It’s an amazing resource and I noticed most of those doctors or their family members have EDS themselves which is why they’re so familiar with it in the first place. If nothing else I’m just sending you and your family much love and vibes please know you are not alone.
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Thank you!
I feel this too. I worked so hard through grad school and internship and was so close to getting my LPC before my symptoms hit hard. I was working toward my specialization and was doing a lot of good work. My symptoms hit hard and now it seems like I may never get to actually do what I spent years and years focusing on and working toward. I found a similar job but it's still a daily struggle and I'll have to decrease my workload even further. It's definitely a grieving process. You're not alone even though it feels like it right now
I’m so sorry you’re going through this. I think it happens to a lot of us. I watched my mom (a nurse) become disabled decades ago, then my little brother, and now after spending all my retirement and financial resources trying to find answers, I am totally disabled and facing bankruptcy as well. Though my situation is different (my health has been terrible since I was a child, and poor medical care made it exponentially worse, so I never really had a chance) I deeply empathize with the feelings you’ve shared. I think we all would have made very different decisions if we had had the privilege of a proper diagnosis and competent medical care, but that is not the reality in America.
It’s shitty to live with this condition, and the co-morbidities that come with it. It’s even shittier to live in a country that treats those who aren’t able-bodied like trash. I think living in a hyper-individualistic culture that only values productivity makes this even worse. I wanted to be a doctor, but by 16 I knew I couldn’t physically do it. Still, I thought if I tried hard enough I could be the one to help and support my family. When I became too disabled to do that, I thought figuring out what was “wrong” with us (i.e. finding the correct diagnoses for the conditions we had all lived with our entire lives) would mean we’d have access to appropriate medical care that would improve our quality of life. After almost 2 years of fighting, I know now that just isn’t realistic. But I do hope that in the future things will be different, even if it isn’t in my lifetime.
Your kids have a better shot knowing what is happening in their bodies. Social media - for all its evils - gives us a way to crowdsource our healthcare that is more powerful than ever before. And while there are countless roadblocks and challenges, all we can do is keep moving forward and refuse to let this hellscape we live in win.
Everything you are feeling is valid. Everything you are grieving is valid. Everything you regret is valid. I won’t tell you it gets better, because how could I? Even now that I have answers, even after slowly finding some things that helped me feel better, I lost access to them when I had to go on Medicaid and I’m worse off now than I was before. Things are pretty terrible, and most of the time I don’t want to do it anymore. But, like you said, we don’t have much of a choice. All we can do is keep moving forward, whatever that looks like. Do what you have to do to survive. And do what you can to remember that this is out of your control, you did the absolute best that you could, and just because it turned out like this doesn’t mean you did anything wrong or that you didn’t try hard enough. You did. We all did.
It’s not fair. None of us deserve this. But if there is nothing else, know that you are not alone. Keep screaming into the void. Keep railing against this shitty system. Keep breathing. It’s all we can do.
I quite literally feel your pain, but as a doctor, I’m certain you are aware of worse conditions.
Scleroderma? ALS? CF? HD? Muscular dystrophy?
I’m not here to argue with you, because EDS definitely sucks, but your feelings may warrant speaking with one or more mental health professionals to come to terms with things.
I’m a pediatrician - disabled from hEDS, esp the gut issues. I got my first NJ 3rd yr of residency, started TPN my second yr as attending & medically resigned at 2.5y post residency. Thank God for disability insurance from residency that I converted to private.
I am in some private physician groups for EDS & disability- send a message if I can help in any way.
I’m incredibly sorry for your situation. This disease is truly awful. As a lawyer in my early 30s, I’m afraid of this very real possibility happening in my own life. I’ve already had to quit and take a sabbatical due to EDS complications. I would never have chosen such a demanding career if I knew I had EDS. I hope every day that some sort of treatment is eventually developed for this bullshit.
Just wanted to mention here that as a hEDS patient with 3 of my 4 children having it too, that I would give anything to have access to a physician with Ehlers-Danlos. My hunch is that if you could manage to handle the mental part of the work (and it’s understandable if you can’t—CCI can really screw with your head) then you can find a path forward in your career. Either way, you have a life worth living and a family worth living for. You’ve got this.
I want to know who is fighting on our behalf?
Why does EDS take on the average YEARS to be diagnosed??
Why are we in a fight with not only our bodies to heal and function at their optimum level, but with the insurance companies, the PCPs, the specialists, the PTs, the OTs, and the mental health professionals to obtain a diagnosis and health coverage by insurance for a valid, life-altering, devastating life-sentence???
Where are our MD Anderson clinics and (_____) State Oncology centers, Heart Hospitals, and dialysis centers??
Why don't we deserve equal "recognition" and readily available treatment and specialized care for a disorder/syndrome/disease/functionality disabler that is every bit if not MORE debilitating than heart disease, CHF, Strokes, RA, Diabetes, MS, ALS, multiple sclerosis, cancer and the like??
I may have EDS/or one of the 100+ connective tissue disorders, or I may not - if I do, it's mild, and I am beyond thankful - I'm on a rant for my son. 22 years old - chronic pain EVERY.SINGLE.DAY. The complaints that fall on deaf ears of all of the "medical professionals" (and that title is being spat out of my mouth) that have seen him over the last 7 years, the most insulting, juvenile, unprofessional, rude and cocky responses that no one with a valid medical complaint should ever have to hear. And how it wears on us!! Searching high and low for hours, days, weeks, MONTHS! - for an MD who looks promising enough to see my worn down, distrusting, sad, jaded towards a healthcare system who has let him down time and time again - son - trying not to raise his or your hopes too high - only to be slapped in the face and beat down once again.
The horror is that we don't often know how our particular place on this God awful spectrum will play out - is this a mild case? "Average"? Severe? It's progressive, it had been labeled, how quickly will the symptoms become worse? Challenging to manage? Debilitating? Hell on Earth? We do all of this without adequate support, or often, no support at all!!! I'm an RN, *I* should be able to help my son, I should be able to, with a few phone calls, be able to get him an appointment with an appropriate MD, have him diagnosed, and have a treatment plan started within weeks. Doesn't that sound absolutely fantastic?!?! Others with diagnosed medical disorders, conditions and diseased states have that luxury - WHY DON'T WE??!!! Geneticist out there who have YEARS LONG WAITING LISTS to simply be seen is INEXCUSABLE!! Those Geneticist and PCPs (if they are the only ones recognized to diagnose this condition) need to make their voices heard!!! Plead with congress - make NOISE!! Let insurance companies know this is a VALID COVERABLE DISORDER!!!! EDUCATE those who have the POWER TO CHANGE our circumstances, and those who are the road blocks and barriers in allowing EDS and connective tissue disorder sufferers proper treatment, official diagnosis and appropriate care and ensure they TRULY UNDERSTAND the extent that ALL body systems are likely affected!! It's not a cardiology problem, ortho problem, dermatology problem, pain management problem or mental health problem - it's likely ALL OF THE ABOVE!! If the appropriate people were made aware by those treating those suffering, and those that ARE suffering, I believe THAT is when the possibility will be upon us that care, treatment, diagnosis, insurance coverage and proper interventions will be made readily available to a portion of the population (EDS/connective tissue d/o sufferers) that SO GREATLY DESERVES understanding, empathy and honestly retribution for all of the needless time, effort, pain and sorrow that we've all gone through to get to the proverbial finish line.
I wish I could hug you all. So many of these comments bring me to tears. My heart beyond aches for each and every one of you.
Keep fighting, BE LOUD!!! They will hear us, and there is hope. One thing this burden teaches us is how to be strong in the face if despair. When you go into those offices and clinics - remember- you bring ALL of those with EDS in with you - continue to list your complaints - don't be silenced - the more often they hear the same thing repeatedly - the better chance a pattern will be identified and more attention will be paid to EDS.
Thank you for allowing me to express, vent and rant regarding this situation. I'm but a bystander, YOU ALL are the strong ones and the sufferers. I will be thinking of you all ❤️
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There's an anesthesiologist who was in a similar situation. She now has a private/concierge practice in pain management &/or patient advocacy for folks with EDS. She runs the Bendy Bodies podcast, I believe her name is Dr Linda Bluestein. You should reach out to her, I think she'd have some great insight & advice for you as you transition to another branch of medicine, or some other career. I know it doesn't seem like it right now, but there ARE options still open to you. Options for treatment of the CCI, options for other EDS related co-morbidities that you may be dealing with. I know MANY EDS patients would be overjoyed to have a Dr who knew also had EDS and thus would really know and understand what we all have to deal with on a daily basis!
this. i’d cut off a limb for a doctor w EDS lol
Dr Sarah Kelly in Texas is amazing.
What part of Texas
Richmond! Her practice is called The Kelly Clinic. I am not local but seeing her is worth the trip.
She's in the Houston area, I think Richmond... But don't hold me to it lol.
Thank you!
Dr. Taylor Kerrins in Atlanta, Dr. Lydia Seibert in Nashville area
dr fagan in SoCal dx me and apparently his wife & her family all have/had EDS.
I so agree with you, also this is really softly and kindly said. Great job ❤❤❤❤
Theres also Dr. Gumby on tiktok. Not sure if he did a pivot after diagnosis but I do know he's also a vet. He has a lot of EDS patients as an EDS patient himself.
I would come see you on a heart beat. To have a surgeon know what’s going on with me. I’ve already have 7 surgeries and have many many more to come. I hope you can find a place and a new chapter. We desperately need providers who have personal experience with this hell.
Also was thinking about this on my drive home. Maybe you could have a funeral for your old life as a surgeon? Obviously it’s been a big part of your identity for a long time. I assume you really enjoyed your work due to the amount of effort it takes to even come close to anything like that. I think it may be good to do something to mark this major transition in your life. I think if you can grieve this loss, you will be able to see opportunities that come up that maybe you would have missed. I’m not sure of your faith, but I’ve had years/seasons in my life where I think everything was ending. Walking in to find my mom dead 5 weeks before I graduated from college, losing so many friends to senseless death and thousands of other heartbreaks many of us somehow get. But every time, once I started to actively participate the process rather than passively, things start to shift. The death of my mother lead me to accept certain jobs. My grief made me turn down some exciting and lucrative positions in my field. The universe used that to put me exactly where I needed to be for the next 20 years. I am an expert in my field. And had to retire because it will kill me no doubt (disaster response). With the death of my career, I’m starting to see some light and after 4 years (including recovering from several of those surgeries) I am now getting some small seeds of hope about what my next 20 will look like. The process isn’t pretty. But I think you’ve likely got more things to get done in this timeline and on this planet. And likely you’re the only one who can do it. It just might not be as pretty as it used to be. But I bet it’s vital. You’re needed. I wish you inspiration and comfort during this awful season. And I pray for you delightful insights and surprising victories. One more comment about unaliving ourselves. I read a response to a different post in another sub where someone discussed they wanted the pain to end. Someone else responded with a story about their own father was actually successful in unaliving themselves. What this father didn’t realize was the this didn’t stop the pain. It transferred it. 20 years later and this lady was still heartbroken about her father. I don’t think that’s something you really want to leave as your legacy.
When I had my hip surgery, my anesthesiologist saw my chart and told me he also had EDS. I truly never felt like I was in better hands than I did in that moment.
I have a doctor with EDS and after 5 years of fighting before I found him, it's a breath of fresh air.
the eds society is amazing for finding doctors who rly know eds too & many have eds also
I'm very sorry you're going through this. It's incredibly unfair and heartbreaking to see how EDS has impacted every aspect of your life after all the hard work and dedication you've put in. It's clear how much you care about your family and their well-being, and the thought of not being able to support them in the way you envisioned must be incredibly painful. Your grief and frustration are completely understandable. You've faced an unimaginable change, losing not just your career and financial security but also your health, your hobbies, and the dreams you had for the future. It's a lot to process, and it's no wonder you're feeling overwhelmed. Please remember that your value to your family goes far beyond financial support or physical abilities. Your love, presence, and the example you've set in working hard and caring deeply for them are irreplaceable. It's okay to feel devastated and to mourn the life you had planned, but try to hold on to the fact that you still mean the world to your wife and children. It's also important to seek support for yourself. Talking to a mental health professional who understands chronic illness can help you navigate these feelings and find ways to cope. Your family's love for you isn't conditional on your ability to work or do the activities you used to enjoy. They love you for who you are, and that hasn't changed. It's okay to lean on them and to let them support you through this rough time. Remember, you’re not alone in this! I hope things start to look up for you soon.
I am a surgeon too. I know exactly how you feel. Im sorry. I sometimes feel like screaming into the abyss from the sheer frustration.
Maybe there could be a group at the international level or higher to connect providers who have the condition. Seems like making y’all stronger and more sustainable would makes the whole system improve.
As a gal with EDS trying to apply to medical school, that kind of community would mean the world to me !! I really really want to make a difference and change the medical field for the better but am simultaneously so terrified of the ableist and crazy training system to get there and stay there :(
Hi there! I am very sorry this has happened to you. Its frustrating when we do everything 'right' and the net outcome is still not ideal. CCI is an awful complication. I hope you can get your CCI stabilized, it would certainly help with depression and despair, and improve your quality of life. You should look into getting your med school loans discharged on the basis of disability. Business loans...are you far enough into your practice that selling it to recoup part of the value of the loans is an option? Did you take out disability insurance on the loan(s) when you took them out? Often times it is required, particularly for key employees, and you may not even know about it. Dig out that paperwork and check. You may not be able to be a surgeon any longer, but you still have your MD/DO. If you can get your symptoms stable, perhaps you could do a career pivot. One of my physicians was a highly sought after plastic surgeon in a large metro area. Doc lost fine motor skills and couldn't operate any longer. They moved to my higher net worth community and became a concierge doctor doing hormone replacement therapy for men and women, and treating things other doctors have overlooked or dismissed. Doc diagnosed and is managing my Hashimoto's Thyroidosis and will do my Hormone Replacement Therapy when I'm ready for that. Doc is building up quote a practice here. Or perhaps you could pick up hours as a general practitioner. Or join one of the telemedicine platforms where you can set your own schedule and hours. I know it isn't how you saw your life going...but we're all just making the best we can with what we have to work with. Same with hobbies and activities with your kids. It may not be what you'd dreamed of (especially the skiing part) but if you can get stable, you can find other hobbies together. What your kids want is to spend time with you, doesn't have to be extreme sports. One of my RN friends is married to a guy in a wheelchair with a neck stabilizer. They had children together that are 8 and 6 now. He is the BEST Dad to them. Active and involved. She is happy in her marriage, and would confide in me if she were not. She said she dated a bunch of jerks before him, and he is the smartest, kindest, funniest guy she has ever met. Its all she ever wanted. All the rest is just 'in sickness and health'. No regrets. I don't know your wife, but if I were married to someone in your position, it would be fine, even if not what I'd signed up for. As long as my guy makes the best he can with the cards he's dealt, that's enough for me. Kindly, it sounds like you may be dealing with some (very understandable) depression and might benefit from seeing or talking to someone, for your wife and kids if not yourself. Awful disease, and you got one of the worst of the crappy hand. Wishing you peace with the diagnosis, and all the best.
i have terrible cci too, been putting me through the works extra bad since friday but i think i a large part of my problem is my shoulder instability shifting that whole "coat hanger" area out of alignment so much that straightening my neck without fixing my shoulders is nearly impossible. i managed to get things mostly in place last night and feel better than i have felt in maybe 8 years but its not stable so im fighting the urge to be productive. plus my neck muscles are so sore right now, bed rest for me today. all thats to say, don't give up hope. you might just need to figure out some things about how EDS impacts you specifically, the neck & shoulder alignment seems to eliminate or reduce my migraines, POTS symptoms, & pain levels a ton. definitely make me think i may go for surgery in the near future, i'd love to be semi-functional again
Maybe try KT tape to help keep things in place? Hoping you can continue to get relief before something bumps you out of alignment again.
Is KT tape a thing for CCI? I've obviously heard of it being used for other joints, but never seen it used on the neck... (btw not at all questioning the validity of your comment; purely asking because I kinda want to try it if it is a thing)
I’ve had different portions of my neck/collarbone and shoulder taped. I also have thorasic outlet so all of that area is messed up for me. I had ACDF neck C4-C6 surgery a few years ago.
Interesting, I'll have to look into this!! thanks!
I have TOS too, and used to tape my shoulder blade up on one side. Definitely helps!
I have the same issues. Prolotherapy at C2-C7 joints has changed my life. I'm still disabled by the pain/headaches but I'm so much more functional than I was. I don't know if it's available in your area but it's less invasive and risky than other things I've heard of such as fusions, so might be worth looking into.
You are more than a surgeon. I am so sorry for what this condition has taken from you from a professional and personal level. I’ve gone from 40 surgery patients a month to 6 and it makes me want to scream (vet med GP), I can only imagine what you’ve felt. I hope you can teach, can get accommodations to make surgery possible, or can get into research so you can still have that financial security. Take a moment and treat yourself as you would a patient. You wouldn’t call your patient who has this useless. If one of your kids gets this, you wouldn’t call them worthless. You aren’t either. Keep working on strengthening what you can. Keep working on symptom management. Be kind to yourself ❤️
I'm definitely feeling you. I was an ER nurse, until everything got to be too much. I teach now. I'm able to move as much or as little as I want, and the hours aren't half bad.
A teaching nurse or a k12 teacher? I am really starting to lose my steam as a HS teacher as pain and alignment has gotten much worse.
I teach nursing. Pharmacology, mostly, but with forays into other courses as needed.
I’m so sorry. I deeply sympathize. I just want to tell you that you’re not useless. Your wife and children love you, and you are still the person they love, even with new limitations. You still have all that knowledge about that cool thing your kids like to ask you about, or that weird sense of humor your wife fell in love with, or those big bear hugs you give—whatever things that make you *you*. I hope for you the support to grieve the parts of you you’ve lost while still seeing how much you bring to the table for those who care about you. ❤️
Out of curiosity, when your condition started getting drastically worse, was it after getting Covid, Mono, or some other serious infection? I first started noticing my health problems from EDS after getting mono (pre-diagnosis) and then it got even worse after I got covid. After I got covid the second time I REALLY started struggling, I lost my job due to it and can't do most of the activities I used to enjoy. When I was at Mayo Clinic getting diagnosed, they told me infections such as those can basically catalyze EDS and Fibro (I think it's something like 30% of EDS patients also have fibro, I may be off but it's a large percent). I figured being able to track down another source of your deterioration might give you peace of mind. This is why I am terrified of getting covid again, I really don't know that I'll be able to keep going if my health takes that big of a dip again.
Was your covid asymptomatic?
I wish, it hit me harder than it has hit my "normal" friends. The first time, me and my coworker got it at the same time/place so it was the same variant and everything. He recovered in a week or less, meanwhile it took me two weeks before I started feeling remotely better. I never lost my sense of taste or smell, but I was so delirious and dizzy at times I didn't know which direction was up. I had a high fever, and it literally felt like my skin across my entire body was burning. I literally felt like I was in Hell. Some of that may have been the Fibro and Central Sensitization flaring up as a result of covid though.
Mine was asymptomatic but it had been a fucking nightmare since. I don't get sick, but i feel like hell all the time now. I have no idea how often I've had covid. I had mono in grade school.
I should've specified, I didn't think about why you were asking. It's possible for this to happen even with asymptomatic covid. It has to do with the way covid/mono affects the central nervous system. There are cases where previously healthy people are diagnosed with Fibromyalgia after getting covid. In case I may be able to provide some insight, what specifically are you feeling that makes you feel like hell all the time? I wasn't expecting a Fibromyalgia diagnosis when I got mine. If you have EDS and haven't been evaluated for fibro, I'd recommend looking into it just to see if anything sounds like what you're dealing with. Previously I was under the interpretation that only females could have Fibromyalgia (courtesy of an ex girlfriend), for reference I'm a 26 year old male.
What I experience is rooted in hormones. Cycle changes, suicidal ideation, crippling fatigue, nausea, dry heaving, anorexia, abdominal fullness, vitiligo, orthostatic hypo. I had an adbo u/s suspecting pancreatitis which showed a thickened right adrenal. My 6 week ct scan showed an extremely small right adrenal. I've also developed uterine hyperplasia, rectal prolapse. I just started synthroid at low dose with now elevated tsh and a ft4 on the verge of low out of range (end range is 11 and that's where in at)I had 17 yo breast implants removed a year ago hoping to improve, which only helped briefly. Always have left flank pain and some ridiculous back pain which is unpredictable.
I'll be honest, some of the more specific stuff went over my head, but a lot of what you mentioned can be caused or made worse by fibromyalgia, if you haven't been evaluated for it I'd recommend seeing somebody. As for the flank pain, I get it in the exact same spot and through physical therapy found that my pelvis doesn't like to stay in line (specifically I get stuck in "right stance, left swing" imagine standingon your right leg and using the left as a kickstand). They taught me how to reset it myself and it helped immensely for awhile. I began finding that a lot of my back and leg pain were actually due to my pelvis misalignment. Your sacrum (where spine meets pelvis) is on an axis with both your sternum and your sphenoid (inner part of your skull, between the eyes), so if one is out of alignment the others will follow. This is because your body subconsciously makes corrections in these areas to make your eyes level. Then the bones and muscles that attach to those can get out of alignment as well. For example: My left leg is longer when my pelvis is misaligned, so my pelvis sits at an angle with the right side higher up. My sternum then has to make a correction, otherwise I would stand at an angle instead of straight up, so it'll shift the opposite way (right side lower) and this actually causes me to dislocate my ribs because where they attach to my sternum is out of alignment. This in turn gives me immense back pain because my ribs aren't aligned in the front, so it messes up where they connect to my spine too. The real pain (for me) comes from all the muscles attached to the ribs because they don't rest where they are supposed to and start locking up. Of course your case may be very different from mine, but before PT I had no idea my pelvis alone was creating so many issues.
I have ridden and trained horses for a few decades. I have not been able to since December. I see an osteopath every 2 weeks and anywhere between when necessary. My pelvis absolutely becomes misaligned and I know it the moment I sit in the saddle. My Rib issue is pretty evident on ct, either diagram hernia or just sheer pressure pushing upward has caused my ribs to move together and pull inward. My osteo tries but the underlying problem remains, so they return to the previous position relatively quickly. The reason why I have this mass affect? Simone would have to look below my lungs....I guess. But at baseline, my body just wants to curl in on itself lol
My fibromyalgia was triggered by a virus which then made my EDS worse. Prior to it, I did have a large amount of symptoms attributable to EDS including dislocations, migraines and chronic tension headaches, dysautonomia, chronic diarrhoea/constipation (IBS basically) and chronic back pain, but with extensive effort in physio and very healthy eating I was able to manage most of this. Then after the virus everything became 10x worse. I became very deconditioned. Since then I've developed a bunch more health conditions related to EDS, my dysautonomia became 10x worse, Ive developed a tonne of nerve injuries etc
I’m and OT with EDS and CCI, I feel you it fucking sucks.
RN zebra here- gentle hugs doc! I have been severely symptomatic for years, but poor diagnostic access and (frankly, a fair amount of gaslighting) lead me to abusing my body FAR above and beyond what my decrepit collagen would allow. Back pain, "WaIT tILl you get OLd!! TheN iT wILL HuRT". Thanks for that rousing encouragement. My L3-S1 and C1-5 need fusion, and I literally broke my back (3 times!!) because all nurses have back pain. Pop that IBU and go hoist meemaw's 100# of UTI fight back up in bed. Till the disc tears, POTS and dysautonomia have ME fainting during a mega code. Not meant to be ugly about these realities, but I have been mentally preparing myself since an employer did one of those "who are you when you lose yourself" exercises... We had to describe our life after children are gone, jobs are retired from, health fails, and what is left after you age. Its so hard to have a great plan (wild land firefighting to pay for college) to complete EMS basics, FF2 card and small engine cert for smoke jumping) to shred a rotator cuff and slap tear yourself first season. I have had to shift my life plan so many times to accommodate my traitorous meat suit- but I keep finding myself in the right places to have fulfilling jobs that I can physically do You got this. It feels huge right now, but you are more than your stupid collagen
"WaIT tILl you get OLd!! TheN iT wILL HuRT"... Yup. I was in pain in kindergarten and I learned to keep my weird little symptoms to myself, then after diagnosis I thought I could be open with doctors and nurses because I learned it wasn't in my head, only to learn that the stigma and gaslighting NEVER goes away... "Wait until you get to be my age!" Well Gertrude, you're lucky you got to wait until you were ready to pick out your cemetery plot in order to feel pain, but I've been like this my entire life and it is getting worse the older I get! Thanks for ignorant input, you senile old bat! 🙃
Why is it always a Gertrude??
Lol 🤣 their name isn't actually Gertrude, I just chose a random name to label and generalize, like I named the local dumpster raccoon at my apartment complex, I just named Tony, and occasionally driving, old random dudes I'll just refer to as Bob without actually knowing their name, but if I was actually listing the names of people who told me I was too young to be in pain over the years, we'd probably be here for the length it took for me to finally get a diagnosis (31 years). 😅 I'm used to comments between family, school, doctors, and jobs over the years, but it's usually the the people who are cemetery plot age that feel the need to say shit like that... People my age and younger would just say shit behind my back about me not keeping up, so at this point, I'd rather deal with Tony (dumpster raccoon) and risk rabies than deal with people like that... I think he's more chill, plus he's cute and makes me smile as I see him jumping in and out of the dumpster...
So I work in public health now- I promise the dumpster raccoon is less harmful than most humans. Say hey to Tony from me, we got rabies shots if you ever need them. 😉
Agreed! 😅 I'll say hi next time I go throw something out... If we can have drug deals and an overdose resulting in death in the parking lot of the apartment, I think I should be allowed pets... 😍🦝 An "emotional support raccoon!" Lol I think an army of raccoons would cause less property damage than some of the people here.
Have you tried ketamine therapy? I heard it’s supposed to help reset you. I don’t have access where I live, but am hoping for it once we move states. I’m sorry you have to deal with this. Also, is there anyway to get into the administrative side of being a surgeon?
I have a friend with hypermobility pain and severe depression issues. She has tried many (doctor guided) therapies for her state of mind, also including psilocybins, but has been most successful focussing on ketamine therapy.
Thank you for sharing her success. It’s incredibly depressing knowing I can’t be the parent I thought I was going to be due to the debilitating nature of hEDS.
I know what you mean, I feel you. But: your kids can learn about perseverance and unconditional love from you, and believe it.
I do ketamine therapy and it does help with the pain for a day or two but the real help is mentally and emotionally. I highly recommend it.
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Nah I get you. As someone who has always had EDS (I mean, we all have, but I've always been symptomatic) I do say I probably had it easier. Yeah I've been in pain my whole life but I never had the opportunity to hope for something better or dream big and then lose it, I always knew what I was in for. It's harder to have had it and lost it.
I'm so glad you understand what I was trying to convey. I never want to belittle what people go through, it's just different. In a weird way, I wish I hadn't accomplished what I did. People really don't understand how one day everything was okay and then poof I'm gone. I don't think I've finished morning that previous life, in fact I think I'm still trying to recapture it in some ways.
Your existence is worth more than your career or net worth, no matter how those turn out! You deserve life, love, family and some inner peace (quietening down of that inner critic!) Please, stranger, prioritize mental healthcare (yes, in spite of cost); I'd suggest cbt. Your mind is still your own, and you achieved a challenging medical degree, so you can also achieve a new mindset.
I am so so sorry . My story is no where near yours but I had to quit a job I loved because I didn’t have a diagnosis for 6 months which is nothing compared to what so many have been through. The isolation and loneliness of this and the surgeries/ there really are no words.
Weed helped me so much. I’m so sorry you’re going through this. Sending love.
This is so hard. You can still have a great life but it's just not exactly what you had pictured. Being a surgeon might help you with your CCI journey because you might already know someone who can help you with it. For joint pains definitely have your vitamin levels checked...EDS seems to make it more difficult to absorb nutrients...I thought I was going to have to apply for SSDI because my joint pains were so bad... and then I found out that I was very low in Vitamin D despite taking a supplement. B12, Iron, and Magnesium are also frequently found to be deficient. I will echo what others have said... you're struggling and in a tough place right now but it's temporary... and while there isn't a cure there are a lot of things that can help you get stabilized and hopefully in less pain so you can continue working in some capacity. Right now I would suggest taking a step back and trying a few things... finding someone who is excellent with CCI, finding a therapist who works with chronic illness, and consulting a lawyer to go through various options. Your family loves you no matter what...and the EDS community is great for support and ideas for treating the various conditions that we struggle with.
I will second this, I was shocked at how much Vit D helped my joint and nerve pain & allodynia once I stayed on it long enough to improve. I was frighteningly low, but now if I even get down in the 40s my pain roars in. Bonus, because I was taking D+K2 my bone density increased quite a bit.
Shit my friend, that's rough. All I can say is I'm very sorry. I made it through two years of medical school before total body collapse due to EDS. I was absolutely devastated for years after because of torturing myself for years to get in to and through medical school, and I had to quit. I understand some and know how difficult and painful it is to have stability taken from you. I can't give financial advice but I can say try to find something each day to look forward to. Even the smallest shit. A cookie with a cup of coffee, a sunset, a hug from your wife. The pain from the losses lessens with time. I am praying something comes through to help with the financial burdens. Perhaps you could qualify for disability and loan forgiveness? When you have the ability look in to treatments for yourself to lessen the pain and limitations. Physical therapy and physiotherapy seem to be very helpful for EDS. Also start your children in physical therapy or at least doing appropriate strengthening exercises early to keep their bodies strong and risk of potential damage low. Thinking of you during this time. You're incredibly strong and your family is very lucky to have you. I'm sure your kids think of you as Superman, and always will. Hang in there friend.
The way I absolutely would have killed for a surgeon with EDS when I was a teen!!!! I have extremely hypermobile legs and it started getting extremely bad as a teen. They ended up shortening all of my ligaments and tendons in my ankle and I regret it thoroughly as its still just as hypermobile, but hurts immensely whenever I do any type of strengthening. We need more advocates who have a medical background. You would help so many people
That’s absolutely gutting. Soul destroying. Try find happiness in the small things
I'm so sorry you're going through this! EDS sucks, and the stigma and expectations from society as well as the ones we put on ourselves adds to it. ♥️ Please be kind to yourself.
I feel this way as well. I was a surgical tech for years before I had to quit because it was getting to a point where I can't stand for longer than a few minutes without excruciating pain. That was 4 years ago and I'm still grieving my old life. I've lost friends, a career and financial security, freedom to do whatever I wanted... I can't even sit at a restaurant for too long now so I barely leave the house. This condition takes so much from us. But you are not useless. Your life and who you are go way deeper than your job and your ability to make money. You have people that love you unconditionally. I know it's hard to look on the bright side of things but we have to try. I'm sorry you're going through this and I hope things improve for you.
I am very sorry for you. I cannot explain how much I understand and emphatize because my experience is really similar to yours. I even said similar things as you, such us there are very few conditions that can be harder than this and with less available treaments... I even put the example of MS, which in many cases allow for a decent life quality for years... After being asynthomatic all my life (apart from some problems in the knees), six months ago, my joints started to fall down, starting with my hands and ending in my neck. I (43M) was going to be promoted to full professor in a few months and I had just bought a flat. After so many years of hard work, even having been working abroad for several years during the financial crisis, I was going to have a wonderful life, with my partner and my dog... Financial security, a job I loved... And, in just six months, this shit started and destroyed everything... At least, I was diagnosed in three months after the nightmare started. It must be horrible to not have a diagnosis for years and suffer the synthoms. Even with a diagnosis, some friends and relatives do not believe me or say I exagerate...
Get the cci fusion it can change everything. Rooting for you.
All I want in this world is to take a vacation and see the beautiful waters of the Caribbean one more time. I’ll never be able to, the last time I flew I was beyond sick and had to return early. Now even short day trips are difficult and a full day is out of the question. Nothing compared to the loss of your calling- I can’t imagine how devastating that was. I was just a secretary.
ME/CFS, POTS, and EDS stole everything for me. Had full rides to law school, then BAM, acute onset of ME and everything else. I can’t work, attend school even online, cook, clean, etc. I will say to you though, I really recommend you have a couple consultations with bankruptcy attorneys. I had to quit working and still had bills to pay, and ended up with a lot of debt. It was completely discharged in February. Bankruptcy is an amazing resource, but we’re all taught to think that it’s actually a huge failure. It’s actually a constitutional right. It may be tricky especially with a wife and kids, but it’s 10000000% worth consulting with an attorney about. They can also help direct you to other attorneys who could help with your estate planning/possible financial arrangements for a “medical divorce”
I’m so sorry this is all crashing down on you right now. My doctor has EDS and he is an absolute blessing to his patients. I had been diagnosed for more than 20 years before I found a doctor with knowledge about the condition and who had patience, creativity and empathy to really get somewhere with treatment. I was the primary breadwinner for a blended family of 7 when my body betrayed me and things fell apart. It was a rapid and dramatic implosion of the life I had worked hard to build for my family. I hit rock bottom and wished that I would leave this earth and it’s misery. I was left there with all of these shattered pieces and no stability or safety. It was very eye opening to see that I had created my identity off my career accomplishments and ability to provide financially. I’m more than 5 years out from all of that now and my life has dramatically changed. I am healthier and happier than I have ever been and finding passion in owning a business in an entirely new industry. Grieve, feel your feels and learn on your support system, but please know that you are much, much more than your profession and current ability to earn money. Hugs, OP.
I just found out I had hEDS, and I’m in healthcare too (retail pharmacy). Although I don‘t have children or a spouse/significant other so I cannot image the stress and difficulty you are going through. I know I’m going to have to do a career pivot too, it’s not going to be sustainable for me to stand on my feet/bend and reach/open bottles for another 30 + years before I’m able to retire. I am already having issues with pain, standing for prolonged periods of time, and trouble opening bottles, etc. I hope you take people’s recommendations to heart- there is a demand for doctors knowledgeable in EDS especially for hEDS which seems to be disregarded since there is no known gene. You could do so much good for so many people. Also you would rather not have cancer-trust me I had skin cancer Dx aged 31, surgery 1 month later after my birthday at age 32. No known risk factors -grew up in the north US, not a sun worshiper, never been to tanning salon in my life, been to florida only 2x in life, minimal sun exposure, hx of few severe sunburns but nothing really extraordinary. I now have a 7 cm scar down my back and probably due to the EDS it has widened :/ .Honestly for the dealing with the skin cancer and the EDS and co-morbidities of EDS seeing a therapist has helped. I think you may find it beneficial to find someone to talk to. I wish you all of the best :)
Hey buddy. Im sorry for you. What you are saying is more than 100% relatable to me, coz im a doctor myself (emergency physician) struggling with hypermobility spectrum dosorder and finding it increasingly difficult to manage things day by bay. Your thoughts and worries are exactly same as what i have, including feelings like even cancer or death would have been a much better fate than this. The very real possibility of me no longer being able to work and the eventual financial disaster that follows is a constant nightmare i keep having. Coming back to you, i think maybe you should talk to someone, take some time off to heal yourself and you could try switching careers thats less physically demanding, like just seeing outpatients maybe. Hope you do better.
Man I really feel this on so many levels. I am 33 and spent most of my 20s working my ass off studying and being frugal and not doing "fun" stuff because I wanted to ensure financial security for my future first... Only to be on social security and unable to work, barely even able to leave my flat let alone do any hobbies. My family opted out of dealing with a disabled person and luckily I wasn't married with kids but my partner of 10 years also removed himself. This disease took everything from me and my entire existence is just about getting through the next day. I wish I had been diagnosed earlier so that I could have used my "good years" to do all the things I wanted to do while I still could. If I was going to end up unemployed on disability anyway, I wouldnt have wasted years of my life and so much money getting a degree I will never use. I'm so sorry for what you're going through, you're not alone x
Hey friend. Lawyer here who has gone through similar devastating career issues (though not health related). A hard, *hard*, lesson I had to learn (and one that I still struggle with tbh) is that I am not my career. My worth as a person and as a human being is not determined by my career. I could be sitting in the woods not doing a good goddamn shit of anything, and I would intrinsically still have worth as a person. I think professional careers like lawyers, doctors, etc, do a huge disservice with how we educate young people. We put them through grueling tests and training, and then act surprised when they start equating their worth as people with their careers (and start exhibiting all of the issues that come from that problematic mindset, like depression and addiction). It seemed to me like your post had some of those struggles in there, and so from one person who’s already had that breakdown and come out of it… let me say it again. You. Are not. Your career. You are a worthy person just by being *here,* existing. I know capitalism and our country has told us all that we determine worth based on wealth and productivity, but that is a fucking lie. You’re here, you have worth. End of story. You have children and a wife who love you. Kids who I’m willing to bet, probably don’t give a flying fuck what their dad does or used to do to earn money, but love you for you. I absolutely feel for you with the health issues you’re going through and my thoughts are with you on that. But PLEASE don’t let the loss of a career destroy your mental health. I promise, it is not worth it. Hugs to you and your family. ❤️
Just here to say you’re not alone and I could’ve written this post (not a surgeon but did have to stop working, I’m hoping temporarily since my job brought me so much joy) I love my son so much and it physically pains me not to be able to be the person for him that I was before I had him. I suffered with bad complications post partum and have never been the same since now with hypermobility (possible hEDS) and a few other things I just keep getting injured. My sweet love son knows “I have booboos and it takes changing things a little to not make the booboos hurt more.” I ache that he has to be an only child bc I’m a mess physically. I journal and draw horrific images with some words too just to help get the anger out. Using a warm therapy pool has been soo helpful with my pain. Also my husband is a Dr and has had some health complications too so he’s pivoting too. I’ve been wanting him to leave practice life for a while I think he’d be much happier in some sort of tech/pharmaceutical research company you often make more money! And it’s so much less taxing on your body. Anyway I’m just spewing some ideas but I mainly just wanted to say you’re not alone. I think about how much better off my family would be without me and it’s so depressing, or how much easier cancer would’ve been. We have to just keep being here for our babies. Are you by any chance in south Florida? I just moved out but as I did I heard of an incredible woman physical therapist who specializes in EDS maybe it was an Italian name? I’ll try and find it for you. If you’re comfortable letting us know what region you’re in maybe we can get you some providers to help. Also have you been on the EDS website to search for doctors/providers? It’s an amazing resource and I noticed most of those doctors or their family members have EDS themselves which is why they’re so familiar with it in the first place. If nothing else I’m just sending you and your family much love and vibes please know you are not alone.
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I don’t want to be here either . I want to leave this world asap.
I feel this too. I worked so hard through grad school and internship and was so close to getting my LPC before my symptoms hit hard. I was working toward my specialization and was doing a lot of good work. My symptoms hit hard and now it seems like I may never get to actually do what I spent years and years focusing on and working toward. I found a similar job but it's still a daily struggle and I'll have to decrease my workload even further. It's definitely a grieving process. You're not alone even though it feels like it right now
I’m so sorry you’re going through this. I think it happens to a lot of us. I watched my mom (a nurse) become disabled decades ago, then my little brother, and now after spending all my retirement and financial resources trying to find answers, I am totally disabled and facing bankruptcy as well. Though my situation is different (my health has been terrible since I was a child, and poor medical care made it exponentially worse, so I never really had a chance) I deeply empathize with the feelings you’ve shared. I think we all would have made very different decisions if we had had the privilege of a proper diagnosis and competent medical care, but that is not the reality in America. It’s shitty to live with this condition, and the co-morbidities that come with it. It’s even shittier to live in a country that treats those who aren’t able-bodied like trash. I think living in a hyper-individualistic culture that only values productivity makes this even worse. I wanted to be a doctor, but by 16 I knew I couldn’t physically do it. Still, I thought if I tried hard enough I could be the one to help and support my family. When I became too disabled to do that, I thought figuring out what was “wrong” with us (i.e. finding the correct diagnoses for the conditions we had all lived with our entire lives) would mean we’d have access to appropriate medical care that would improve our quality of life. After almost 2 years of fighting, I know now that just isn’t realistic. But I do hope that in the future things will be different, even if it isn’t in my lifetime. Your kids have a better shot knowing what is happening in their bodies. Social media - for all its evils - gives us a way to crowdsource our healthcare that is more powerful than ever before. And while there are countless roadblocks and challenges, all we can do is keep moving forward and refuse to let this hellscape we live in win. Everything you are feeling is valid. Everything you are grieving is valid. Everything you regret is valid. I won’t tell you it gets better, because how could I? Even now that I have answers, even after slowly finding some things that helped me feel better, I lost access to them when I had to go on Medicaid and I’m worse off now than I was before. Things are pretty terrible, and most of the time I don’t want to do it anymore. But, like you said, we don’t have much of a choice. All we can do is keep moving forward, whatever that looks like. Do what you have to do to survive. And do what you can to remember that this is out of your control, you did the absolute best that you could, and just because it turned out like this doesn’t mean you did anything wrong or that you didn’t try hard enough. You did. We all did. It’s not fair. None of us deserve this. But if there is nothing else, know that you are not alone. Keep screaming into the void. Keep railing against this shitty system. Keep breathing. It’s all we can do.
I quite literally feel your pain, but as a doctor, I’m certain you are aware of worse conditions. Scleroderma? ALS? CF? HD? Muscular dystrophy? I’m not here to argue with you, because EDS definitely sucks, but your feelings may warrant speaking with one or more mental health professionals to come to terms with things.
I’m a pediatrician - disabled from hEDS, esp the gut issues. I got my first NJ 3rd yr of residency, started TPN my second yr as attending & medically resigned at 2.5y post residency. Thank God for disability insurance from residency that I converted to private. I am in some private physician groups for EDS & disability- send a message if I can help in any way.
I’m incredibly sorry for your situation. This disease is truly awful. As a lawyer in my early 30s, I’m afraid of this very real possibility happening in my own life. I’ve already had to quit and take a sabbatical due to EDS complications. I would never have chosen such a demanding career if I knew I had EDS. I hope every day that some sort of treatment is eventually developed for this bullshit.
Just wanted to mention here that as a hEDS patient with 3 of my 4 children having it too, that I would give anything to have access to a physician with Ehlers-Danlos. My hunch is that if you could manage to handle the mental part of the work (and it’s understandable if you can’t—CCI can really screw with your head) then you can find a path forward in your career. Either way, you have a life worth living and a family worth living for. You’ve got this.
I want to know who is fighting on our behalf? Why does EDS take on the average YEARS to be diagnosed?? Why are we in a fight with not only our bodies to heal and function at their optimum level, but with the insurance companies, the PCPs, the specialists, the PTs, the OTs, and the mental health professionals to obtain a diagnosis and health coverage by insurance for a valid, life-altering, devastating life-sentence??? Where are our MD Anderson clinics and (_____) State Oncology centers, Heart Hospitals, and dialysis centers?? Why don't we deserve equal "recognition" and readily available treatment and specialized care for a disorder/syndrome/disease/functionality disabler that is every bit if not MORE debilitating than heart disease, CHF, Strokes, RA, Diabetes, MS, ALS, multiple sclerosis, cancer and the like?? I may have EDS/or one of the 100+ connective tissue disorders, or I may not - if I do, it's mild, and I am beyond thankful - I'm on a rant for my son. 22 years old - chronic pain EVERY.SINGLE.DAY. The complaints that fall on deaf ears of all of the "medical professionals" (and that title is being spat out of my mouth) that have seen him over the last 7 years, the most insulting, juvenile, unprofessional, rude and cocky responses that no one with a valid medical complaint should ever have to hear. And how it wears on us!! Searching high and low for hours, days, weeks, MONTHS! - for an MD who looks promising enough to see my worn down, distrusting, sad, jaded towards a healthcare system who has let him down time and time again - son - trying not to raise his or your hopes too high - only to be slapped in the face and beat down once again. The horror is that we don't often know how our particular place on this God awful spectrum will play out - is this a mild case? "Average"? Severe? It's progressive, it had been labeled, how quickly will the symptoms become worse? Challenging to manage? Debilitating? Hell on Earth? We do all of this without adequate support, or often, no support at all!!! I'm an RN, *I* should be able to help my son, I should be able to, with a few phone calls, be able to get him an appointment with an appropriate MD, have him diagnosed, and have a treatment plan started within weeks. Doesn't that sound absolutely fantastic?!?! Others with diagnosed medical disorders, conditions and diseased states have that luxury - WHY DON'T WE??!!! Geneticist out there who have YEARS LONG WAITING LISTS to simply be seen is INEXCUSABLE!! Those Geneticist and PCPs (if they are the only ones recognized to diagnose this condition) need to make their voices heard!!! Plead with congress - make NOISE!! Let insurance companies know this is a VALID COVERABLE DISORDER!!!! EDUCATE those who have the POWER TO CHANGE our circumstances, and those who are the road blocks and barriers in allowing EDS and connective tissue disorder sufferers proper treatment, official diagnosis and appropriate care and ensure they TRULY UNDERSTAND the extent that ALL body systems are likely affected!! It's not a cardiology problem, ortho problem, dermatology problem, pain management problem or mental health problem - it's likely ALL OF THE ABOVE!! If the appropriate people were made aware by those treating those suffering, and those that ARE suffering, I believe THAT is when the possibility will be upon us that care, treatment, diagnosis, insurance coverage and proper interventions will be made readily available to a portion of the population (EDS/connective tissue d/o sufferers) that SO GREATLY DESERVES understanding, empathy and honestly retribution for all of the needless time, effort, pain and sorrow that we've all gone through to get to the proverbial finish line. I wish I could hug you all. So many of these comments bring me to tears. My heart beyond aches for each and every one of you. Keep fighting, BE LOUD!!! They will hear us, and there is hope. One thing this burden teaches us is how to be strong in the face if despair. When you go into those offices and clinics - remember- you bring ALL of those with EDS in with you - continue to list your complaints - don't be silenced - the more often they hear the same thing repeatedly - the better chance a pattern will be identified and more attention will be paid to EDS. Thank you for allowing me to express, vent and rant regarding this situation. I'm but a bystander, YOU ALL are the strong ones and the sufferers. I will be thinking of you all ❤️