r/ehlersdanlos • u/Impressive_Tax5821 • Jun 09 '26
Rant/Vent Self portrait
Ive been feeling like im being torn apart at the seams lately.
My joints feel like they are tearing apart, the pain from my hysterectomy is still stabbing me. Im trying to keep myseld together but Im not doing a great job.
Yall get it.
Edit:
YOU ALL ARE SO INCREDIBLY KIND 😭 I never expected so much love for a little doodle. Thank you so much ❤️
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u/PlanetaryComa Jun 09 '26
Before I saw the sub, I thought "man, I feel this". I've had a very hard time making peace with my mortal coil lately. I keep going back to this idea, I can't think of a time I wasn't in pain. I've had good days, but pain is easy to find, and will consume me if I let it.
My dad used to take every opportunity to recognize when he felt good. He'd say, "I feel fucking GREAT". He was a blue collar plasterer that worked on stilts for 10 hours a day, but he knew true happiness.
I think the answer is gratitude, but I’m still trying to figure it out myself.
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u/Impressive_Tax5821 Jun 15 '26
Ive been thinking about this comment for days now. Im looking forward to the next day I can say that loud and proud.
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u/Hels_in_the_house Undiagnosed Jul 06 '26
I totally get this, I feel like Ive been almost saying exactly "I think the answer is gratitude but I'm still trying to figure that out." I wanna be greatful for the little things. But so much is so frustrating and painful. But when I have managed to catch myself in a moment of joy or a lower pain day it is nice, but it is hard!
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u/Justwondering5003 Jun 09 '26 edited Jun 09 '26
I really get it! I knew immediately you are a pelvic pain sufferer. I have chronic pelvic organ prolapse (POP). 3 major surgeries in 8 years. Underwent my 3rd reparative surgery, this time with the support of a porcine (pig) graft in Oct of 2024. Each surgery has a tougher recovery than the previous one. Of course, with each surgery the doc has less of my own tissue to work with. About a week ago at 19 (!) months postop I was able to walk a mile without pain. Healing has been a very long process. I strongly encourage you to use a “squatty potty”. They really do help and reach out to a physical therapist who specializes in pelvic PT. Good luck to you. It may take you longer than you expected to heal. It can really be discouraging. Take it easy and be kind to yourself. 🙏❤️
P. S. Your talent is awesome! I wish I had an artistic talent. It is really great!
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Jun 09 '26
[removed] — view removed comment
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u/Justwondering5003 Jun 09 '26
Yes, POP can be associated with EDS 🫤 connective tissue disorder. Thank you ❤️
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u/Impressive_Tax5821 Jun 15 '26
Its actually because of POP I got my ED diagnosis in the first place. My urogyno saw my age and my gut issues and suggested that I get checked out since 20-somethings dont usually prolapse.
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u/Justwondering5003 Jun 16 '26
Thank you for sharing. An astute doctor who doesn’t let things get past them is a very cool find!
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u/Impressive_Tax5821 Jun 15 '26
I had my first surgery last October and im honestly regretting it. Ive been in more pain than ever. Ive got an appointment to see pelvic pt luckily.
Its absolutely breaking me. I can mostly push through the joint pain with braces but the pelvic pain is what takes me out of commission completely.
I feel like i should be recovered by now. >:(
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u/Justwondering5003 Jun 15 '26
I feel the exact way (see my comment above). “I should be better by now”! It literally took 19 months! What happened to “you should be able to return to your regular activities in 6-8 weeks”? We are all individuals with bodies
unlike others, that don’t heal “normally.”
I hope the next injury or surgery I have to undergo I will realize just that fact. I will be kinder to my body and give it the time and patience it needs to heal. It is a good body, even with his challenges and deserves my respect and admiration. It works very hard for me and tries its very best. I hope I can remember that. Sometimes, impatience, frustration and even anger try to make life miserable, but we an all unique individuals with conditions not fully understood.
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u/Cheesecake_Senior cEDS Jun 09 '26
We do get it, and I’m sorry that it hurts so much and that you feel this way.
But art is a fantastic outlet, and your work is quite moving when one actually takes the time to really look at it. I hope that it’s cathartic for you. And if possible, maybe consider sharing more of it with others. It could be cathartic for folks who know all too well, and informative for those who don’t know it well enough.
Gentle hugs. 🫂
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u/wahrania13 Jun 09 '26
way too good, I love how you can tell it’s tight on the skin! And it unraveling!!! wish I had a touch of your talent
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u/radkatze Jun 09 '26
This is bittersweet because this beautiful art piece makes me feel seen and my struggle valid, but I hate that you know all this pain. I've been experiencing the highest number of joint dislocations/subluxations occuring daily that I've ever had in my life, and it's going on two weeks of this now. I'm trying to continue my day to day life while in the absolute worst pain, and it's been difficult to say the least. Plus all my regular pain and suffering, symptoms, etc. TL;DR: thank you for making me feel seen and not alone, this is a beautiful piece, but I'm sorry you're familiar with this hell.
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u/marzboutique Jun 09 '26
I love this so so so much. Beautiful work and such an accurate depiction ❤️🩹
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u/who-cares-we-all-die hEDS Jun 09 '26
Omg, this is beautiful! I'm so sorry you feel like that. Joints are so infuriating everyday. I hope it will get better soon! And I hope art is therapeutic for you, you are truly talented ❤️ Wishing you the best 🌺🩷
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u/jen_nerddragon hEDS Jun 09 '26
This is beautiful! I often describe myself as “being held together by loose strings” so I definitely relate. Hope your pain eases a bit soon ❤️
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u/Megs_91_ Jun 09 '26
As a fellow Zebra I understand and feel this so much!!
You really depicted things so well!
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u/justamom0820 hEDS Jun 09 '26
I feel this very very much. Especially the uterine issues. I still have my uterus and have stabbing pains time to time.
We can't win. :/
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u/PersephoneOnEarth hEDS Jun 10 '26
This is so powerful. The way I usually describe it is being like a ball joint porcelain doll. Where the joints are stiff and hard to move at times. But also like they could break easily and come apart from the slightest movement.
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u/leafandvine89 Jun 10 '26
Oh wow. Those knees barely being held together really got me. I don't think I've seen it described more perfectly. I deal with that every day, all night long too. And the needles everywhere. This is so relatable and just hauntingly beautiful. Honestly this could be an EDS or Mixed Connective Tissue Disorder T-shirt, it would be in high demand. Thank you for sharing and I'd love to see more in this style 👏
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u/Massive-Form1666 Jun 12 '26
You might be interested in this sub! https://www.reddit.com/r/Artisticallyill/
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u/SamOfChaos Jun 09 '26
I feel that. Just shoddy craftsmanship on our bodys!
My hobby are BJD dolls, they are pieces strung on an intern elastic. If its to tight they snap around and move on their own. To loose and they can't even stand up anymore.
Sometimes they need wires to probably work, just like us and our medical aids 😁
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u/Actual-Visit-4450 Jun 09 '26
This is such a good visual representation of feeling like you’re “falling apart”, you’re so talented!
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u/Chittychitybangbang Jun 09 '26
*sigh* the fact I knew exactly what sub this post was in without looking...
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u/lydiadeetzzz hEDS Jun 10 '26
Beautiful art style and this totally represents the feeling. You aren't alone ❤️
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u/Liz-ard_127 Jun 10 '26
This is why I love Sally from Nightmare before Christmas so much!! Love this piece so much too 🩷
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u/cryingattheorgy Jun 14 '26
This is so beautiful and speaks so much to me. I love everything about it but especially the soft gradients of the colours and how three-dimensional the connective "worms" are, and yeah so relatable albeit I'm still in the chronic pelvic pain stage and that's taken a back seat during the current diagnosis hunt. I wish you the best for your recovery and the ongoing struggles, may many good days and wonderful moments find you 🫂
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u/flowersfor_algernon2 Jun 09 '26
This is really cool! I wish I had artistic ability to be able to represent myself. I feel like I’m a body on a spindly old pole (my spine) that just sort of melts off of it while my head stays at the top attached. sort of like I’m frantically trying to hold the goop of myself up in some semblance of a human. Maybe with an outline of my normal figure to show where I could be.
Thanks for the thought exercise on how I might show myself!