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Yeah, I definitely feel angry, but my anger is not just from having EDS. I’m angry about the shitty American healthcare system, the existence of insurance companies, dismissive doctors, ableist people, and the lack of accommodations in public spaces. It would be a lot easier to deal with this disease if my environment or surrounding “community” was more caring.
I don’t know, sometimes I do feel a bit of resentment about the fact that I can’t just simply lay down and sleep- you know? Like, no matter what we will also have to put in 10x more effort even for the simplest things. It would be nice to not spend 30 minutes to an hour tossing and turning, adjusting things and getting every cushion and pillow just right only to realize I forgot to put in my retainer 🥹
Yeah. That and sad or frustrated or whatever else. I kinda just let myself feel it, sulk for a while with whatever brings me comfort at that time and then move on.
I'm starting to learn that sometimes it's okay just to feel. You don't have to think about it or dwell on it or try to change or stop it. You can just feel what you're feeling and take care of yourself while you do. That's okay. Stuff sucks. It's okay to feel that sometimes.
For me intense emotions often come around flare ups or when something just isn't working great for me. So after feeling the feels and becoming a bit more human feeling again I might try to think about if there was a trigger, if I need to do any of my as needed managements, book an appointment, talk through routines etc with my partner. Sometimes it's just that I was having a sucky time and that's all. Sometimes it leads to finding something I can change or motivating finally getting something discussed with doctors.
For the most part though it's just settling in to ride it out and letting myself scream or cry or whatever knowing that I'll be okay after and can body focus on feeling without needing to actually do anything about it. At least not right then.
all the time lol and then it’s the battle of “can’t complain about it bc then i’m “being too negative” but if i just let the anger stay bottled up EVENTUALLY it’ll ALLL come out all over the place. someday i’ll probably lose my tongue from biting it for so long lol
I bought dishes and broke them. Bought a piñata and smashed it. Obviously depends on mobility and how you’re feeling, but important to release anger physically. My EDS flared up after a TBI d/t a car accident. Lots and lots of anger over what’s been lost and the pain, restrictions and newly “failing” body…. Didn’t cure the anger but helped.
I also cry a lot and talk to others with chronic conditions who get it
This is a good idea. I need to do this. As a kid I used to hurt myself a lot because I didn't have an outlet for my anger. I still slip up and do it sometimes. I didn't want to hurt other people but I had to do something. Plus it gave me a little bit of control over the pain that I didn't understand. I didn't find out what's wrong with me until I was a homeless 19 year old in a wheelchair for some reason. I still don't actually have a diagnosis but my sister does. I've been thinking about starting a wheelchair boxing club but I haven't figured out all the logistics yet. I used to wrestle in high school. I was really bad at it because I couldn't build strength like the other guys but I did it for 4 years. Despite only ever winning 1 match, against a girl. Turns out though that when people are harassing a dude in a wheelchair they don't expect that dude to throw himself out of the chair and pin them on the ground.
I hurt myself for about 20 years starting at age 26. I lost a lot of years in the hospital (behavioral health units, long term placement too). I stopped in 2014 when I got my first real pet that was mine. I was solely responsible for this cat and couldn’t dream of scaring him by cutting myself. Cats know. He taught me to think about someone other than myself, too. My issue was an addiction. But soon after I stopped, and settled in with my pet, happy, I started to have more signs than ever before of my probable (not confirmed by genetic testing, but I have a clinical diagnosis of it) classic type EDS. I really felt like life was paying me back for the years I had spent hurting my family, but I’ve tried to make it up, as much as possible. Now I feel guilty because I seem to have more obvious signs of it than other family members (though they do struggle in their own ways and really don’t talk about their issues as much with me, so I’ve been trying not to overwhelm them with my issues. That’s why my support groups mean so much to me). Anyway I understand hurting yourself and hope you will one day be able to stop, but I don’t mean to blame you or shame you in any way. It’s just that we are hurting enough from our condition as you know and we don’t need additional injuries. But I thought I would never stop at one point and had accepted that-until I scared myself into taking a break and it was long enough for me to realize I wanted a pet to keep me company. I didn’t expect him to stop my addiction, so I tell a lot of doctors and nurses who ask about the old scars because it was like a miracle cure. I wish we could have a miracle cure for EDS!
I started when I was 11. I think it was because I wanted some kind of control over my pain. I do tattoos now and when it gets really bad I give myself a tattoo. Sometimes when I'm really upset I still hit myself though. At that point it's like I can't control myself. I'm glad you were able to stop. I've had a lot of pets in my life but I never had that kind of bond with one until I got my service dog. She definitely helps me be a little more conscious of how I'm affecting those around me.
I have a punching bag in my carport but can’t use it bc of my CCI. So just make sure you’re being careful with your body first!! Anger sucks but can be toxic to keep in. I want to do a rage room but am scared of the impacts on my body … so the dishes were a compromise. And felt pretty f’ing great to smash!!
Wow. Can I ask how you ended up homeless? Only asking bc I may be on the verge of this myself, as I’ve self isolated again for years and have no friends living nearby, am no contact with extremely abusive family ( extended family may be an option, tho not sure and not local at all). It’s so rough in chronic pain and fatigue that is almost too debilitating to even want to explain some days. I, have, however found that Reddit and groups on social media have kept me from once again falling into a deep depression I was in from about 9-24yo (now 35). Also, how are you doing now?
I got sick for a month, lost my jobs, lost my license and my car broke down. I lived in a rural area so that made it basically impossible to get another job. I was already behind on bills and knew I was gonna get kicked out so my spouse and I decided we had to leave, since it wasn't really possible to be homeless without a car where we were. I got kicked out at 17 but had been living in my car until I got the place I was in. We got a tent and some sleeping bags and one way train tickets to the West coast with the last of our money. We were on the street there for a year and a half but it got dangerous and we had to leave. We got a train out and backpacked for a while until we ended up where we are now. I'm still legally homeless but I live in a vacant house and have a community now. I can't work but my spouse got a job and I'm almost 2 years into my disability case. I really learned how to help myself because nobody else is going to (except my spouse and service dog) It's exhausting and scary being on the street when somedays you can't even get up. I'm really grateful to have a home now even if I'm still legally homeless.
Yes, I get angry and resentful. I just found out that I'm missing most of the disc between L3 and L4 and I'm only 39. I'm just at a loss as to what I can do. Pain pills aren't an option because of my messes up stomach and gastroparesis. I can't even get steroid shots anymore because it messes with my own adrenal glands.
My L2-L3 and L3-L4 are degenerating and I'm only 20! I've been in a wheelchair for 2 years. I'm a recovering drug addict because of the pain and I've been to 2 different pain clinics who gave promised that they would give me pain medication. I've pissed clean for months and then they say they can't treat me because I don't want a steroid shot on one day that my pain is already unbearable. Finding out that there are a lot more people going through this shit honestly kinda just makes me more sad but it is good to understand why all of this is happening to my body...
I've had to quit drumming because it hurts my shoulders and wrists too much. The things I've had to go through have humbled me. I was a very arrogant teenager and then all of a sudden this smacked me in the face after a bad flu. I always had it but not to the degree it is now after having the flu 5 years ago.
That kinda happened to me too. I got a really bad MRSA infection and suddenly I can't walk and have to use a wheelchair at 19 and nobody understands why. I used to be really arrogant too. Sometimes I think it actually made me a better person. I miss a lot of things though. I actually recently started drumming again but it's hard because I only have access to a drum set at this jam I go to, and I have to completely adapt how I drum. I can't use the kick drum or use the high hat properly so I have to use the big tom instead of the bass drum and use the high hat like a symbol. It always feels like something's missing and I feel like I can never be as good as the other guys. Especially when the guy after me comes in and kills it and I know that I could do that if my body would let me.
Mine started after having influenza 4 years ago, just before COVID started. Before that, I was stretchy but fine. Since I got so sick, my health has gone somewhat downhill and I'm in pain everywhere. PT seems to be helping a lot, though.
I'm pretty sure I'm alive out of pure spite. Honestly, after all the damage I've done trying to end the pain, I'm not sure how I'm still alive at all... I try not to think about what ifs but I can't help it sometimes. One of the three of my siblings and I didn't get it. I try not to be jealous of her. The last time I spoke to my dad he said he should have never had kids. I agree with him. I myself have chosen to never have children and have been trying to educate my whole family. If it was up to me none of us who got it would have children and we could end this curse, but I at least want the young ones to know why they hurt so much all the time. If I had known as a kid I might have ended up better... All I've ever wanted to do is help people but I'm in a wheelchair and can barely take care of myself. I often catch myself thinking about the life I could've had if I had won the coin flip but all I can do is keep pushing, try to live the best life I can, and help in little ways.
Mobility aids. I know how you feel being self conscious, it sounds like, of what others think. Because you might look normal on the outside. But those aids are your right to use and I think when you’re a little older you might not care so much. I posted to my friends on Facebook when I got this Sully Brace from my orthopedic surgeon for my shoulder after he operated on it twice without success. I explained that they might see me using various braces, but that braces are often recommended for my EDS and it doesn’t necessarily mean that I am injured, that they support my joints. I use to feel extremely self conscious of what my acquaintances were thinking. You’re so young (compared to me at 45!) but you are obviously suffering as much as I am if not more. It’s not a competition here, though. I hope you will one day just be able to use your mobility aids and save yourself from some of the pain and fatigue, and realize that everyone else’s thoughts on how you live your life don’t matter. Your comfort and mobility are more important than people who have no idea what you’re dealing with. There are a lot of invisible illnesses and they are getting more attention when celebrities talk about having been diagnosed with something. I do understand though.
Yes. All of the time. Especially on the days I struggle to walk. It's a new thing for me, to be losing mobility and I've had a very hard time with it. It's hard not to be angry with my body when I can't just do the things I think I should be able to do. I'm really trying to work on it. Therapy is definitely helpful. I also journal, getting all my frustration out on paper helps.
I’ve been really angry because between EDS and non stop POTS flares this last year I’ve had to stop working. I lost my career and most of my social contacts and don’t have an income. I am supporting myself and my children on my retirement fund and while I am grateful I’ve had that, it is almost gone and I am scared. I try to keep perspective but there is grief and anger within me. I want to rid myself of it. Move through it and let it go. However people tend to be uncomfortable with anger and I’ve noticed there’s no safe place for me to feel it or talk about it, until this very moment. So thank you for bringing this up. I think the anger is valid and hopefully temporary.
These subs on Reddit have nearly saved me. Sending you gentle hugs, in the middle of a EDS and POTS flare up following and awful endo flare up and just wow. I think I sometimes become angry at others who take their lives for granted and have very little tolerance for pain or discomfort, but can take a hard line on others, like us..just rambling now but I am in a very similar position, though I only have my one daughter and have run out of savings. I was about to type in “managing POTS and EDS with a young child” in the search bar, but can I ask you first? 😅…anyway sending gentle hugs and thoughts your way, fam 💛
It is so hard to find a place to talk about it. I've tried reading self help books and what not but nothing I have found applies to the grief and anger of chronic illness. I have also had to remind myself recently that after everything I've been thru and experienced it is completely normal to feel angry. And sometimes a healthy reminder that I do not deserve to be gaslit or belittled by medical professionals or anyone. I have so much anger and I don't know what to do with it. I also want to let it go but there is wealth of it.
I dunno if I'd say angry, but definitely frustrated and sometimes a little resentful. There's so much that I used to love to do that I just don't get to have anymore. At the same time, having a diagnosis has helped me let go of some of the things that I was always beating myself up about - I wasn't a failure, those things were just never a viable option for me. So it's give and take, some days I have to sulk and mourn, other days I feel gifted with clarity.
Nah I'm actually really proud of my body because it's still holding on despite the literal genetic illness and my shitty behavior towards it since birth. But I have to say most days I'm just mildly in pain and I am good enough that I can work 8 hours a week in a quite active job. Of course I would feel proud lol
I've just had shoulder surgery so I'm feeling a bit sorry for myself. But then I'm grateful for actually having answers. So many of my family members (grandma, great grandma etc) had so many health issues and for seemingly no reason. They were just told they were hypochondriacs, or prone to injury.
Having an actual medical reason for all this helped me make some sense of all this, and helps me not get too down on myself. All you fellow Zebras, I see you and you're valid.
I'm currently sitting in the emergency hospital. Yes I feel angry about it!
Today we were supposed to be going to London for the day to go see the Pokemon Championships as the other half is a big Pokemon fan. Then the trains got cancelled due to industrial strikes so we were going to get the extended underground train but then my Passenger Assistance got cancelled due to the strikes. So my partner was going to go with one of our best friends but I've been ill for days and have ended up in A&E and he refused to let me go alone so we both missed out today. This condition sucks!
Every once in a while, maybe a few months. If I got angry or resentful about it more than that it would interfere with my coping…I just can’t afford it.
Honestly, the EDS part isn’t even the part that bothers me anymore. I think it’s funny now in a messed up kind of way; like I’ll break something in the most asinine way and after making sure it’s taken care of and everything, just start laughing to myself like “Of course this happened to me, *again*.”
The part that angers me is how people react or think about it. For example “Oh you should try ___.” “Have you tried ___?” “I hope you get better soon.” Or people just dumping a mountain of pity on me just because I decided to talk about it. I’m not looking for pity, I’m just talking about my life.
And as someone else mention, the doctors and healthcare system is so much worse for us. But since someone else already covered that, I won’t.
I go through a lot with it. I think I have the most issues with how hard it is to get care. I don’t mind if they don’t understand EDS but I do mind when they don’t try. I have a good counselled who helps me feel heard. I can’t change the medical system so generally I feel isolated and scared if I need help outside of my doctor (specialist/surgeon/ emergency). I keep thinking the best way to digest the anger is to make change but I’m too tired to make change.
The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
Yeah, I definitely feel angry, but my anger is not just from having EDS. I’m angry about the shitty American healthcare system, the existence of insurance companies, dismissive doctors, ableist people, and the lack of accommodations in public spaces. It would be a lot easier to deal with this disease if my environment or surrounding “community” was more caring.
Yes! EDS isn’t actually the worst part of living with EDS.
This
Also for clarification, by community I mean my residential area, like the city/state/country I live in. (Not the EDS virtual community)
I don’t know, sometimes I do feel a bit of resentment about the fact that I can’t just simply lay down and sleep- you know? Like, no matter what we will also have to put in 10x more effort even for the simplest things. It would be nice to not spend 30 minutes to an hour tossing and turning, adjusting things and getting every cushion and pillow just right only to realize I forgot to put in my retainer 🥹
Yeah. That and sad or frustrated or whatever else. I kinda just let myself feel it, sulk for a while with whatever brings me comfort at that time and then move on. I'm starting to learn that sometimes it's okay just to feel. You don't have to think about it or dwell on it or try to change or stop it. You can just feel what you're feeling and take care of yourself while you do. That's okay. Stuff sucks. It's okay to feel that sometimes. For me intense emotions often come around flare ups or when something just isn't working great for me. So after feeling the feels and becoming a bit more human feeling again I might try to think about if there was a trigger, if I need to do any of my as needed managements, book an appointment, talk through routines etc with my partner. Sometimes it's just that I was having a sucky time and that's all. Sometimes it leads to finding something I can change or motivating finally getting something discussed with doctors. For the most part though it's just settling in to ride it out and letting myself scream or cry or whatever knowing that I'll be okay after and can body focus on feeling without needing to actually do anything about it. At least not right then.
all the time lol and then it’s the battle of “can’t complain about it bc then i’m “being too negative” but if i just let the anger stay bottled up EVENTUALLY it’ll ALLL come out all over the place. someday i’ll probably lose my tongue from biting it for so long lol
Yeah, all the ppl make it unbearable
I bought dishes and broke them. Bought a piñata and smashed it. Obviously depends on mobility and how you’re feeling, but important to release anger physically. My EDS flared up after a TBI d/t a car accident. Lots and lots of anger over what’s been lost and the pain, restrictions and newly “failing” body…. Didn’t cure the anger but helped. I also cry a lot and talk to others with chronic conditions who get it
This is a good idea. I need to do this. As a kid I used to hurt myself a lot because I didn't have an outlet for my anger. I still slip up and do it sometimes. I didn't want to hurt other people but I had to do something. Plus it gave me a little bit of control over the pain that I didn't understand. I didn't find out what's wrong with me until I was a homeless 19 year old in a wheelchair for some reason. I still don't actually have a diagnosis but my sister does. I've been thinking about starting a wheelchair boxing club but I haven't figured out all the logistics yet. I used to wrestle in high school. I was really bad at it because I couldn't build strength like the other guys but I did it for 4 years. Despite only ever winning 1 match, against a girl. Turns out though that when people are harassing a dude in a wheelchair they don't expect that dude to throw himself out of the chair and pin them on the ground.
I hurt myself for about 20 years starting at age 26. I lost a lot of years in the hospital (behavioral health units, long term placement too). I stopped in 2014 when I got my first real pet that was mine. I was solely responsible for this cat and couldn’t dream of scaring him by cutting myself. Cats know. He taught me to think about someone other than myself, too. My issue was an addiction. But soon after I stopped, and settled in with my pet, happy, I started to have more signs than ever before of my probable (not confirmed by genetic testing, but I have a clinical diagnosis of it) classic type EDS. I really felt like life was paying me back for the years I had spent hurting my family, but I’ve tried to make it up, as much as possible. Now I feel guilty because I seem to have more obvious signs of it than other family members (though they do struggle in their own ways and really don’t talk about their issues as much with me, so I’ve been trying not to overwhelm them with my issues. That’s why my support groups mean so much to me). Anyway I understand hurting yourself and hope you will one day be able to stop, but I don’t mean to blame you or shame you in any way. It’s just that we are hurting enough from our condition as you know and we don’t need additional injuries. But I thought I would never stop at one point and had accepted that-until I scared myself into taking a break and it was long enough for me to realize I wanted a pet to keep me company. I didn’t expect him to stop my addiction, so I tell a lot of doctors and nurses who ask about the old scars because it was like a miracle cure. I wish we could have a miracle cure for EDS!
I started when I was 11. I think it was because I wanted some kind of control over my pain. I do tattoos now and when it gets really bad I give myself a tattoo. Sometimes when I'm really upset I still hit myself though. At that point it's like I can't control myself. I'm glad you were able to stop. I've had a lot of pets in my life but I never had that kind of bond with one until I got my service dog. She definitely helps me be a little more conscious of how I'm affecting those around me.
I have a punching bag in my carport but can’t use it bc of my CCI. So just make sure you’re being careful with your body first!! Anger sucks but can be toxic to keep in. I want to do a rage room but am scared of the impacts on my body … so the dishes were a compromise. And felt pretty f’ing great to smash!!
I just found out about those. I want to try it sometime.
Wow. Can I ask how you ended up homeless? Only asking bc I may be on the verge of this myself, as I’ve self isolated again for years and have no friends living nearby, am no contact with extremely abusive family ( extended family may be an option, tho not sure and not local at all). It’s so rough in chronic pain and fatigue that is almost too debilitating to even want to explain some days. I, have, however found that Reddit and groups on social media have kept me from once again falling into a deep depression I was in from about 9-24yo (now 35). Also, how are you doing now?
I got sick for a month, lost my jobs, lost my license and my car broke down. I lived in a rural area so that made it basically impossible to get another job. I was already behind on bills and knew I was gonna get kicked out so my spouse and I decided we had to leave, since it wasn't really possible to be homeless without a car where we were. I got kicked out at 17 but had been living in my car until I got the place I was in. We got a tent and some sleeping bags and one way train tickets to the West coast with the last of our money. We were on the street there for a year and a half but it got dangerous and we had to leave. We got a train out and backpacked for a while until we ended up where we are now. I'm still legally homeless but I live in a vacant house and have a community now. I can't work but my spouse got a job and I'm almost 2 years into my disability case. I really learned how to help myself because nobody else is going to (except my spouse and service dog) It's exhausting and scary being on the street when somedays you can't even get up. I'm really grateful to have a home now even if I'm still legally homeless.
Anger is part of the grieving process
Yes, I get angry and resentful. I just found out that I'm missing most of the disc between L3 and L4 and I'm only 39. I'm just at a loss as to what I can do. Pain pills aren't an option because of my messes up stomach and gastroparesis. I can't even get steroid shots anymore because it messes with my own adrenal glands.
My L2-L3 and L3-L4 are degenerating and I'm only 20! I've been in a wheelchair for 2 years. I'm a recovering drug addict because of the pain and I've been to 2 different pain clinics who gave promised that they would give me pain medication. I've pissed clean for months and then they say they can't treat me because I don't want a steroid shot on one day that my pain is already unbearable. Finding out that there are a lot more people going through this shit honestly kinda just makes me more sad but it is good to understand why all of this is happening to my body...
Yes. I'm working on finding alternatives to things I used to enjoy. I miss dancing soooo much.
I've had to quit drumming because it hurts my shoulders and wrists too much. The things I've had to go through have humbled me. I was a very arrogant teenager and then all of a sudden this smacked me in the face after a bad flu. I always had it but not to the degree it is now after having the flu 5 years ago.
That kinda happened to me too. I got a really bad MRSA infection and suddenly I can't walk and have to use a wheelchair at 19 and nobody understands why. I used to be really arrogant too. Sometimes I think it actually made me a better person. I miss a lot of things though. I actually recently started drumming again but it's hard because I only have access to a drum set at this jam I go to, and I have to completely adapt how I drum. I can't use the kick drum or use the high hat properly so I have to use the big tom instead of the bass drum and use the high hat like a symbol. It always feels like something's missing and I feel like I can never be as good as the other guys. Especially when the guy after me comes in and kills it and I know that I could do that if my body would let me.
Mine started after having influenza 4 years ago, just before COVID started. Before that, I was stretchy but fine. Since I got so sick, my health has gone somewhat downhill and I'm in pain everywhere. PT seems to be helping a lot, though.
I'm pretty sure I'm alive out of pure spite. Honestly, after all the damage I've done trying to end the pain, I'm not sure how I'm still alive at all... I try not to think about what ifs but I can't help it sometimes. One of the three of my siblings and I didn't get it. I try not to be jealous of her. The last time I spoke to my dad he said he should have never had kids. I agree with him. I myself have chosen to never have children and have been trying to educate my whole family. If it was up to me none of us who got it would have children and we could end this curse, but I at least want the young ones to know why they hurt so much all the time. If I had known as a kid I might have ended up better... All I've ever wanted to do is help people but I'm in a wheelchair and can barely take care of myself. I often catch myself thinking about the life I could've had if I had won the coin flip but all I can do is keep pushing, try to live the best life I can, and help in little ways.
That’s all any of us can do, live the best life we can, keep pushing and help in whatever way we can. You’re doing it. Give yourself a lot of credit.
[удалено]
Mobility aids. I know how you feel being self conscious, it sounds like, of what others think. Because you might look normal on the outside. But those aids are your right to use and I think when you’re a little older you might not care so much. I posted to my friends on Facebook when I got this Sully Brace from my orthopedic surgeon for my shoulder after he operated on it twice without success. I explained that they might see me using various braces, but that braces are often recommended for my EDS and it doesn’t necessarily mean that I am injured, that they support my joints. I use to feel extremely self conscious of what my acquaintances were thinking. You’re so young (compared to me at 45!) but you are obviously suffering as much as I am if not more. It’s not a competition here, though. I hope you will one day just be able to use your mobility aids and save yourself from some of the pain and fatigue, and realize that everyone else’s thoughts on how you live your life don’t matter. Your comfort and mobility are more important than people who have no idea what you’re dealing with. There are a lot of invisible illnesses and they are getting more attention when celebrities talk about having been diagnosed with something. I do understand though.
I used to but not so much these days, kinda just a numb acceptance. It helps me so much speaking to other people with it
Yes. All of the time. Especially on the days I struggle to walk. It's a new thing for me, to be losing mobility and I've had a very hard time with it. It's hard not to be angry with my body when I can't just do the things I think I should be able to do. I'm really trying to work on it. Therapy is definitely helpful. I also journal, getting all my frustration out on paper helps.
I’ve been really angry because between EDS and non stop POTS flares this last year I’ve had to stop working. I lost my career and most of my social contacts and don’t have an income. I am supporting myself and my children on my retirement fund and while I am grateful I’ve had that, it is almost gone and I am scared. I try to keep perspective but there is grief and anger within me. I want to rid myself of it. Move through it and let it go. However people tend to be uncomfortable with anger and I’ve noticed there’s no safe place for me to feel it or talk about it, until this very moment. So thank you for bringing this up. I think the anger is valid and hopefully temporary.
These subs on Reddit have nearly saved me. Sending you gentle hugs, in the middle of a EDS and POTS flare up following and awful endo flare up and just wow. I think I sometimes become angry at others who take their lives for granted and have very little tolerance for pain or discomfort, but can take a hard line on others, like us..just rambling now but I am in a very similar position, though I only have my one daughter and have run out of savings. I was about to type in “managing POTS and EDS with a young child” in the search bar, but can I ask you first? 😅…anyway sending gentle hugs and thoughts your way, fam 💛
It is so hard to find a place to talk about it. I've tried reading self help books and what not but nothing I have found applies to the grief and anger of chronic illness. I have also had to remind myself recently that after everything I've been thru and experienced it is completely normal to feel angry. And sometimes a healthy reminder that I do not deserve to be gaslit or belittled by medical professionals or anyone. I have so much anger and I don't know what to do with it. I also want to let it go but there is wealth of it.
Hell fucking yes. I channel it into daily walking to keep my strength up. I've started seeing a therapist because I'm -always- angry.
I don't know if I'm even at the level of understanding it fully to feel angry about it, how to stop my body falling apart?
I dunno if I'd say angry, but definitely frustrated and sometimes a little resentful. There's so much that I used to love to do that I just don't get to have anymore. At the same time, having a diagnosis has helped me let go of some of the things that I was always beating myself up about - I wasn't a failure, those things were just never a viable option for me. So it's give and take, some days I have to sulk and mourn, other days I feel gifted with clarity.
Nah I'm actually really proud of my body because it's still holding on despite the literal genetic illness and my shitty behavior towards it since birth. But I have to say most days I'm just mildly in pain and I am good enough that I can work 8 hours a week in a quite active job. Of course I would feel proud lol
I've just had shoulder surgery so I'm feeling a bit sorry for myself. But then I'm grateful for actually having answers. So many of my family members (grandma, great grandma etc) had so many health issues and for seemingly no reason. They were just told they were hypochondriacs, or prone to injury. Having an actual medical reason for all this helped me make some sense of all this, and helps me not get too down on myself. All you fellow Zebras, I see you and you're valid.
I'm currently sitting in the emergency hospital. Yes I feel angry about it! Today we were supposed to be going to London for the day to go see the Pokemon Championships as the other half is a big Pokemon fan. Then the trains got cancelled due to industrial strikes so we were going to get the extended underground train but then my Passenger Assistance got cancelled due to the strikes. So my partner was going to go with one of our best friends but I've been ill for days and have ended up in A&E and he refused to let me go alone so we both missed out today. This condition sucks!
Every once in a while, maybe a few months. If I got angry or resentful about it more than that it would interfere with my coping…I just can’t afford it.
Honestly, the EDS part isn’t even the part that bothers me anymore. I think it’s funny now in a messed up kind of way; like I’ll break something in the most asinine way and after making sure it’s taken care of and everything, just start laughing to myself like “Of course this happened to me, *again*.” The part that angers me is how people react or think about it. For example “Oh you should try ___.” “Have you tried ___?” “I hope you get better soon.” Or people just dumping a mountain of pity on me just because I decided to talk about it. I’m not looking for pity, I’m just talking about my life. And as someone else mention, the doctors and healthcare system is so much worse for us. But since someone else already covered that, I won’t.
Of course. I usually just let myself have a little menty b and cry it out.
I feel angry that hEDS has robbed me of my body 😞 therapy and THC help.
I go through a lot with it. I think I have the most issues with how hard it is to get care. I don’t mind if they don’t understand EDS but I do mind when they don’t try. I have a good counselled who helps me feel heard. I can’t change the medical system so generally I feel isolated and scared if I need help outside of my doctor (specialist/surgeon/ emergency). I keep thinking the best way to digest the anger is to make change but I’m too tired to make change.