Love the race analogy because that's exactly what it feels like. What a sigh of relief it is to gain just a bit more knowledge about yourself and how it applies to how you show up and operate in this world.
I feel this for you and with you, A. You and I have some acronym overlap, turns out. I often joke that I wonder how many times I will "come out" in my lifetime. Each time, it requires me to reconfigure my map of reality (sometimes more, sometimes less). It's both validating and cause for new grieving. Wishing you lots of gentle spaciousness for all of it, including any future revelations. 🐣
I have over past 5 years been adding to the alphabet soup because it's been in my 30's where suddenly I have been more and more unable to keep it together, to keep masking or pretending that I can fit into the neurotypical world where they expect us to be normal like a cookie cutter that can say, do or be exactly like they want us to be. I am likely about to add APD* to Autism, ADHD, POTS, gHSD + cPTSD.
* Auditory processing disorder co-occurs at high frequency with neurodivergence or any learning conditons/disorders- Approx. 50%.
Hi. Pretty much word for word the same experiences here, too. hEDS and gHSD overlap alot. More easy to get the HSD diagnosis then the EDS ones in most countries sadly enough but their treatment is the same. Additionally, you may need to deep dive family hisotry too to determine if you need a genetic panel to rule more serious EDS types or the more rarer connective tissue disorders before the formal hEDS will be officially diagnosed. I recently doing out thanks to my gran, mum's and own symptoms that I need gee tic testing that is noteasy to get in Aus and is actually recommended to use US or Sweden's genetic labs for the broader genetic panel for connective tissue disorders.
That's so interesting! I'm in the U.S. and am hoping to be able to be referred to a rheumatologist for an evaluation. I think I might qualify for diagnosis because my sister and I share many of the same symptoms and certain traits seem to run in the family, but I'll be happy to rule out other things. I did look at some of the other types of EDS which don't seem to fit at all, but you never know! Every health system is so different, but I hope you can get whatever support you need!
Yes, I can't afford the international costs yet to rule out the more rare connective tissue disorders specifically. I don't fit the Beighton scale cookie cutter options and my family has some concerning flags. I have had the hypermobility in my fingers, wrists, toes, ankles, shoulders, ribs and neck with low core muscle tone. I don't match the knees or elbows. Because is have so many small joints that are hypermobile, I have to test fornthe rarer ones. My gran had surgical complications, my mum had complications with my birth and I had an extremely unusual severe swelling reaction to one type of asthma pump with my vocal cords so now we think my osephagus is also extra stretchy and sensitive. I already have the gut issues of HSD, too.
That's definitely tricky. I believe I meet the criteria for the Beighton scale because I used to be able to touch my hands flat to the floor without bending my knees, but I can't anymore and also don't have the elbows. Knees are questionable from my perspective looking in the mirror, but I definitely have the wrists and pinkies. My family traits relate more to the soft and stretchy skin and such, as far as I know, and I also have the related GI issues and POTS. I also had severe pelvic girdle pain during both of my pregnancies which I've read is common in people with hEDS, so from what I can tell the signs seem to be pointing pretty strongly in that direction, I've got a pretty high success rate with confirmed suspicions, so hopefully that will hold. 😅🤞🏻 Fingers crossed that when you figure it out it's nothing more serious for you as well, but regardless I hope you'll be able to access care easily.
The race analogy is so good. Totally agree. Finding out how to work with myself rather than against myself or extra hard like that, has also been a huge shift in the last decade. It really has taken quite a long time since initial dx to observe how these things work today and what’s best for me. It’s been really hard work to forge a path that’s good for me because it goes against everything I’ve been taught about how I’m supposed to be.
The invisible hurdle metaphor is such a good one. I have a post like this in the works. I’ve just been diagnosed with hEDS, POTS & MCAS. Finding a doctor who knows what these are is so hard! I’ve known for 7 years and just now diagnosed. 😭
We have so much in common! In a way I might be lucky to have figured them out individually... I've been able to work with specialists for each of them and confirm them pretty easily (if not always very quickly). I wish someone could've figured it out for me sooner, of course, but it's certainly nice to know now.
I’m finding it very similar to my autism diagnosis in learning what supports I need and trying not to push past limits. When we’ve been trained to ignore our body’s wisdom for so long it is a real game changer to realize it’s not “overreacting.”
Mine has mostly been over the last 5 years as well! Having a second kid really threw me for a loop, but I'm grateful that it's led me to a better understanding of myself.
I relate to the auditory processing issues for sure. I have to laugh every time I have a new revelation about my physical and mental health because every time they're "commonly co-occuring" - no kidding! Lol
Love the race analogy because that's exactly what it feels like. What a sigh of relief it is to gain just a bit more knowledge about yourself and how it applies to how you show up and operate in this world.
Thank you for reading! I know you understand this experience well. 🧡
I feel this for you and with you, A. You and I have some acronym overlap, turns out. I often joke that I wonder how many times I will "come out" in my lifetime. Each time, it requires me to reconfigure my map of reality (sometimes more, sometimes less). It's both validating and cause for new grieving. Wishing you lots of gentle spaciousness for all of it, including any future revelations. 🐣
Thank you, Keith! I'm not surprised we have some overlapping acronyms since we have quite a few other things in common. 🧡
I have over past 5 years been adding to the alphabet soup because it's been in my 30's where suddenly I have been more and more unable to keep it together, to keep masking or pretending that I can fit into the neurotypical world where they expect us to be normal like a cookie cutter that can say, do or be exactly like they want us to be. I am likely about to add APD* to Autism, ADHD, POTS, gHSD + cPTSD.
* Auditory processing disorder co-occurs at high frequency with neurodivergence or any learning conditons/disorders- Approx. 50%.
Hi. Pretty much word for word the same experiences here, too. hEDS and gHSD overlap alot. More easy to get the HSD diagnosis then the EDS ones in most countries sadly enough but their treatment is the same. Additionally, you may need to deep dive family hisotry too to determine if you need a genetic panel to rule more serious EDS types or the more rarer connective tissue disorders before the formal hEDS will be officially diagnosed. I recently doing out thanks to my gran, mum's and own symptoms that I need gee tic testing that is noteasy to get in Aus and is actually recommended to use US or Sweden's genetic labs for the broader genetic panel for connective tissue disorders.
That's so interesting! I'm in the U.S. and am hoping to be able to be referred to a rheumatologist for an evaluation. I think I might qualify for diagnosis because my sister and I share many of the same symptoms and certain traits seem to run in the family, but I'll be happy to rule out other things. I did look at some of the other types of EDS which don't seem to fit at all, but you never know! Every health system is so different, but I hope you can get whatever support you need!
Yes, I can't afford the international costs yet to rule out the more rare connective tissue disorders specifically. I don't fit the Beighton scale cookie cutter options and my family has some concerning flags. I have had the hypermobility in my fingers, wrists, toes, ankles, shoulders, ribs and neck with low core muscle tone. I don't match the knees or elbows. Because is have so many small joints that are hypermobile, I have to test fornthe rarer ones. My gran had surgical complications, my mum had complications with my birth and I had an extremely unusual severe swelling reaction to one type of asthma pump with my vocal cords so now we think my osephagus is also extra stretchy and sensitive. I already have the gut issues of HSD, too.
That's definitely tricky. I believe I meet the criteria for the Beighton scale because I used to be able to touch my hands flat to the floor without bending my knees, but I can't anymore and also don't have the elbows. Knees are questionable from my perspective looking in the mirror, but I definitely have the wrists and pinkies. My family traits relate more to the soft and stretchy skin and such, as far as I know, and I also have the related GI issues and POTS. I also had severe pelvic girdle pain during both of my pregnancies which I've read is common in people with hEDS, so from what I can tell the signs seem to be pointing pretty strongly in that direction, I've got a pretty high success rate with confirmed suspicions, so hopefully that will hold. 😅🤞🏻 Fingers crossed that when you figure it out it's nothing more serious for you as well, but regardless I hope you'll be able to access care easily.
The race analogy is so good. Totally agree. Finding out how to work with myself rather than against myself or extra hard like that, has also been a huge shift in the last decade. It really has taken quite a long time since initial dx to observe how these things work today and what’s best for me. It’s been really hard work to forge a path that’s good for me because it goes against everything I’ve been taught about how I’m supposed to be.
Yes! It's hard to trust your intuition when you've been told to do the exact opposite for so long.
Exactly. I’m glad to say me and my intuition have a much clearer and stronger relationship these days.
I love hearing that. Me and mine do as well.
The invisible hurdle metaphor is such a good one. I have a post like this in the works. I’ve just been diagnosed with hEDS, POTS & MCAS. Finding a doctor who knows what these are is so hard! I’ve known for 7 years and just now diagnosed. 😭
We have so much in common! In a way I might be lucky to have figured them out individually... I've been able to work with specialists for each of them and confirm them pretty easily (if not always very quickly). I wish someone could've figured it out for me sooner, of course, but it's certainly nice to know now.
I’m finding it very similar to my autism diagnosis in learning what supports I need and trying not to push past limits. When we’ve been trained to ignore our body’s wisdom for so long it is a real game changer to realize it’s not “overreacting.”
Yes! In many ways, my ADHD and autism diagnoses helped me acknowledge my physical struggles. They're all so interconnected.
Mine has mostly been over the last 5 years as well! Having a second kid really threw me for a loop, but I'm grateful that it's led me to a better understanding of myself.
I relate to the auditory processing issues for sure. I have to laugh every time I have a new revelation about my physical and mental health because every time they're "commonly co-occuring" - no kidding! Lol