Chronic Illnesses and Physical Diseases Megathread

[Wizard999666]

Asthma (was very severe during youth)
Cystic acne during youth
Nasal polyps
Schizophrenia
Severe depression

My parents and sibilings are all healthy. Even my cousins are healthy, and my grandparents were. I can really deal with everything except for the depression.

 

[Cryptonite]

Severe spinal disorder affecting most of my spine. It could have been completely cured when I was a child, but a low-rated doctor misdiagnosed me and my parents did not care. When I reached out to the doctor many years later, she denied all responsibility. I wrote about her negligence everywhere on the Internet and now she wants to sue me, but I don't care. My mom is now totally devastated and apologetic for her own negligence, but it's too late. I'm in permanent pain that is sadly not constant, but progressive. The pain gets worse every week. It took away all of the things that I loved: sports, friends, girlfriend, hobbies, work, studies... I named sports first, that's how much I loved them. I was obsessed with them. Now the only hope is death. Knowing that I will end up in a state without any pain & agonizing awareness of what I've lost is relieving.

Also, screw my narcissistic father who passed on the gene.

 

[Krieger]

I have a very bad spine that constantly hurts (mom has severe scoliosis) and my esophagus burns all the time. I also have bow leggedness and a chronic headache. :(

 

[Cryptonite]

I have a very bad spine that constantly hurts (mom has severe scoliosis) and my esophagus burns all the time. I also have bow leggedness and a chronic headache. :(

You know something is screwed up with the medical/educational system, when these kind of things are not routinely diagnosed & treated... it's absolutely ridiculous, I personally had to go to like 5 doctors and then self-diagnose the condition based on Internet research, because these idiots just didn't have a clue

 

[parasola]

Ehlers danlos syndrome, autism, ADHD. EDS affects collagen (I have less of it) and makes my joints loose & skin/muscles weak. I only found out about it this year, but have been taking adderall & other stimulant meds for over 2 years prior. Unfortunately those meds damage collagen in the body also, so my EDS symptoms became way more severe. Basically, poor motor function, fatigue, light sensitivity, GI issues, joint dislocation, constant discomfort, arthritis, etc. And i'm only 20, which really sucks.

 

[Cryptonite]

Ehlers danlos syndrome, autism, ADHD. EDS affects collagen (I have less of it) and makes my joints loose & skin/muscles weak. I only found out about it this year, but have been taking adderall & other stimulant meds for over 2 years prior. Unfortunately those meds damage collagen in the body also, so my EDS symptoms became way more severe. Basically, poor motor function, fatigue, light sensitivity, GI issues, joint dislocation, constant discomfort, arthritis, etc. And i'm only 20, which really sucks.

Maybe it's useless advice, but I've heard medical marijuana works sometimes well for EDS, lowered pain sometimes by 60 %

 

[Releasefrompressure]

I have cancer. Terrible pain. It is probably fixable under circumstances. However I am in the 3rd world ish.
I came out here to retire with my wife. I am not really able to get treatment on my finances.

My wife is willing to sell the house we have and our assets, but I am not willing to allow her to do that. She is naturally heartbroken but I am lucky enough to have nembutal so it should be quick at least. First thought I had was shooting myself in the heart (so i could have open casket) but glad i came across this place.

 

[parasola]

Maybe it's useless advice, but I've heard medical marijuana works sometimes well for EDS, lowered pain sometimes by 60 %

Not useless advice at all, thank you for the thoughtful reply! Weed has definitely helped manage some pain symptoms

 

[Cryptonite]

I have cancer. Terrible pain. It is probably fixable under circumstances. However I am in the 3rd world ish.
I came out here to retire with my wife. I am not really able to get treatment on my finances.

My wife is willing to sell the house we have and our assets, but I am not willing to allow her to do that. She is naturally heartbroken but I am lucky enough to have nembutal so it should be quick at least. First thought I had was shooting myself in the heart (so i could have open casket) but glad i came across this place.

Maybe you can try some countries with extremely cheap healthcare, such as India? I always suggest this to everyone, but I don't know if that's doable for you

 

[dropintheocean]

Im hoping healing and relief for everyone here. I know how hard it can be. If someone is going to have VAD at Switzerland I would love to talk with you.

 

[Rational man]

Im hoping healing and relief for everyone here. I know how hard it can be. If someone is going to have VAD at Switzerland I would love to talk with you.

GOOD luck, hope someone replies soon. I looked at Switzerland, but expensive and im too ill to travel. I stil l have plan B

 

[dropintheocean]

GOOD luck, hope someone replies soon. I looked at Switzerland, but expensive and im too ill to travel. I stil l have plan B

Thank you! Im sorry for your suffering! May I ask whats your plans?

 

[Rational man]

Thank you! Im sorry for your suffering! May I ask whats your plans?

i would rather not say but i may have clues elsewhere.

 

[jupiterwinds]

Hi all. I'm severely chronically ill and disabled. Will be doing a post about the specifics. Interested in the Swiss option down the line potentially.

 

[no more pain]

Two years ago, I started having huge back and nerve pain. I have severe plate degeneration in my back. I also have chronic knee and foot pain. The operation did not work and the painkillers do not work.
Pain is the main reason why I think about CTB, I can't take that pain anymore.

 

[whitefeather]

www.forbes.com%2Fsites%2Fwilliamhaseltine%2F2022%2F05%2F09%2Fscientists-discover-genetic-cause-of-lupus-findings-may-help-research-on-long-covid%2F&usg=AOvVaw09ejuPYr1MktHQG7_CYELi

 

[starryeyedgemini]

Thanks for creating this thread. I have stage 4 endometriosis I've had 3 surgeries since 2015 and it just keeps coming back and more severe. Im in paij a lot and its so draining. I also have moderate depression and mild Hms too.

 

[PrincessInWhite]

My eating disorder and the resulting glucose intolerance quite literally destroyed my body. Highly suspected Heart failure for which the only treatment is diuretics that I can't take due to severe bladder nerve damage causing urgency and frequency, gastroparesis, autonomic and peripheral neuropathy, suspected liver issues as well. My blood sugar is not controllable anymore due to gastro issues so likely kidneys will be next.

I am quite literally on borrowed time here and frantically trying to enjoy any time I have left but I know it's not a lot.

Anyone else reading this with terminal illness or issues that will eventually kill them/who are on a time frame please reach out, would love company

 

[Lawliet]

i feel kind of lame posting here compared to other people but i'm telling myself that my problems aren't any less valid. i have chronic 24/7 headaches and migraines, ive tried everything under the sun for it and nothing will work. i have light and sound sensitivity and i can't leave my house. no one can find the source and it's been going on for two years. i also have gastroparesis, which is where your stomach is slow to digest and you have an extremely limited about of food you can eat. my biggest source of food is ensure protein drink. i also have ARFID, which is an eating disorder based around food trauma rather than body image. it goes right hand in hand with my gastroparesis and makes it so hard to eat anything. im extremely weak and need assistance walking.

then there's the mental stuff, bpd, ptsd, anxiety, depression. some sort of dissociative disorder as well. im looking into sn as my only option besides hanging, but the gastroparesis makes the sn VERY iffy but what else is there.

 

[PrincessInWhite]

i feel kind of lame posting here compared to other people but i'm telling myself that my problems aren't any less valid. i have chronic 24/7 headaches and migraines, ive tried everything under the sun for it and nothing will work. i have light and sound sensitivity and i can't leave my house. no one can find the source and it's been going on for two years. i also have gastroparesis, which is where your stomach is slow to digest and you have an extremely limited about of food you can eat. my biggest source of food is ensure protein drink. i also have ARFID, which is an eating disorder based around food trauma rather than body image. it goes right hand in hand with my gastroparesis and makes it so hard to eat anything. im extremely weak and need assistance walking.

then there's the mental stuff, bpd, ptsd, anxiety, depression. some sort of dissociative disorder as well. im looking into sn as my only option besides hanging, but the gastroparesis makes the sn VERY iffy but what else is there.

Out of all the stuff I have I want to validate for you none of it (besides the lack of sleep) is as awful to me as when I have a bad headache. I CANNOT handle headaches. By the grace of god I don't get them frequently but to have them CONSTANTLY With no relief?? That is absolutely quality of life ruining. I couldn't do it. At least I can use my lucid hour or two if the day to enjoy media, an unrelenting headache would steal even that. I'm so sorry you're going through this, I have gastroparesis too asymptomatic but affects my digestion and sugars it also made me eliminate SN from the table. n I still consider as backup (I'm doing nitrogen) since you don't suffer in the meantime it would just take longer to die but since learning I have this I have taken SN 100% off the table

 

[Lawliet]

Out of all the stuff I have I want to validate for you none of it (besides the lack of sleep) is as awful to me as when I have a bad headache. I CANNOT handle headaches. By the grace of god I don't get them frequently but to have them CONSTANTLY With no relief?? That is absolutely quality of life ruining. I couldn't do it. At least I can use my lucid hour or two if the day to enjoy media, an unrelenting headache would steal even that. I'm so sorry you're going through this, I have gastroparesis too asymptomatic but affects my digestion and sugars it also made me eliminate SN from the table. n I still consider as backup (I'm doing nitrogen) since you don't suffer in the meantime it would just take longer to die but since learning I have this I have taken SN 100% off the table

i really appreciate your support, it seems like we're in similar situation and i'm sorry. SN was my saving grace for so long because i had a supplier lined up and everything. i live at home with my parents so i have to be discreet, i would do it at night. my perfect little plan. i have plenty of antiemetics. i would like to do nitrogen or something else but it's rather impossible to get materials in without alerting my parents.

 

[PrincessInWhite]

i really appreciate your support, it seems like we're in similar situation and i'm sorry. SN was my saving grace for so long because i had a supplier lined up and everything. i live at home with my parents so i have to be discreet, i would do it at night. my perfect little plan. i have plenty of antiemetics. i would like to do nitrogen or something else but it's rather impossible to get materials in without alerting my parents.

I hear you I have a large closet so was able to get a pretty big tank in there but I'm lucky bc everyone is gone most of the day so it wasn't hard at all for me to hide it. I'm so sorry you're dealing with this, my inbox is always open to you!!

 

[breadlexington]

Thank you for making this thread.

I have Ehlers-Danlos syndrome. All the collagen in my body is defective. The problem with collagen is it's everywhere. Joints, ligaments, muscles, teeth, eyes, skin.

 

[OpheliasFlowers]

i feel kind of lame posting here compared to other people but i'm telling myself that my problems aren't any less valid. i have chronic 24/7 headaches and migraines, ive tried everything under the sun for it and nothing will work. i have light and sound sensitivity and i can't leave my house. no one can find the source and it's been going on for two years. i also have gastroparesis, which is where your stomach is slow to digest and you have an extremely limited about of food you can eat. my biggest source of food is ensure protein drink. i also have ARFID, which is an eating disorder based around food trauma rather than body image. it goes right hand in hand with my gastroparesis and makes it so hard to eat anything. im extremely weak and need assistance walking.

then there's the mental stuff, bpd, ptsd, anxiety, depression. some sort of dissociative disorder as well. im looking into sn as my only option besides hanging, but the gastroparesis makes the sn VERY iffy but what else is there.

You and I share MANY of the same ailments and conditions. First though I want to say I'm very sorry for everything you're dealing with. :(

I too have ARFID, due to pretty much all my life (since I can remember, around 6 yrs old and I'm early 50s now) having had chronic nausea and bowel issues, for which no diagnosis has ever been given except IBS. A few GI doctors I've seen over the years have suggested I may have gastroparesis, although none have bothered to actually test for it so I can't say I DO have it. But I have many of the symptoms such as not being able to eat much, slow eating (I've always been that way, since childhood as well). I can't even begin to guess how many cans of Ensure I've had in my life to try to make up for the calories and nutrition I'm not getting from actual food, and especially in the last 3 years. I'm severely underweight and weak. Finally, I also, largely due to my lifetime of poor health but especially because of the GI pain and issues, I have many mental health stuff: depression, anxiety (generalized, social, and health anxiety....particularly about anything related to the stomach, bowels, etc), and PTSD.

Again, I'm really sorry for all that you're going through. I understand so well how hard it is. Food is necessary to live but it's also something that makes up so much of our interactions with others - holidays, celebrations, family time, etc. Having food-related trauma - ARFID - is very difficult because most people just don't get it that you WANT to eat, that you don't have a body-image based disorder but instead one formed from fear of pain due to eating. They simply can't comprehend that (at least, that's been my experience). If you ever want to chat or need an ear to simply listen, please reach out to me.

 

[WearyHSP]

I was diagnosed with ME/CFS. For 15 years no one believed me. That fact breaks my heart. It's been 24 years now. Invisible illnesses have the double whammy of making you really sick but not looking sick, so there's also a ton of backlash that goes with it as well as lack of any support. Doctors still aren't trained on this disease. I can't find a doctor who can treat me.

If I had an okay life my health would be tolerable. I'm disabled and alone.
I'd say childhood trauma, PTSD, and recurring destructive patterns are 50x worse than the illness and the reason it's clear my life will continue to get only worse at this stage. No more doors are opening, they're just closing.

 

[Rounded Apathy]

Hi folks. Looks like this one's been a bit quiet for a while; might be good to wake it up? I just arrived and posted the Homeric version of what's happened to me overall to bring me here, but the short and sweet version is, like several of you, a lovely melange interconnected physical and mental health woes. Physically, besides lots of little random weird shit like unexplained transient dizziness, expanding and fading genital lesions, etc., it's mainly a (continuing?) history of a lovely thing called anal fissures. Lots of people have minor ones they barely notice but for some, it's weeks of feeling like your shits are full of broken glass. and you're in debilitating pain for many, many hours afterward. I've had hemorrhoids my whole life (which are now getting worse) and are almost certainly a contributing factor, the only treatment for which I've been offered so far (though I know there are others...) was described as worse than fissures, so unsurprisingly I'm not rushing for that.

After the first one I managed to bounce back alright, but three more in I'm basically constantly on edge every time I feel any anal discomfort, on the toilet or otherwise. These things often to hand in hand with infections, abscesses, and fistulae (you don't even want to know what that is) so I feel like I'm just running up the clock for some other fucking fun time. I relive the bad times pretty regularly and have had some pretty violating medical experiences with it and def. have some PTSD around it all.

Not to mention PTSD from other shit, being anxious in general, depressed af about my own life and the state of the world which is being laid to waste faster and faster by the horrible rich and powerful, extreme loneliness and isolation (paradoxically worsened by living in a shared house where there's minimal interaction - besides affordability I specifically chose this style to avoid being lonely ffs), gradual disconnect from old/former friends, working a crap job I do not enjoy, fear of investing heavily in anything positive/life change attempts because what if another fissure (or some random other horrible thing) gets in the way...honestly it's been many years of one step forward and three back. I figure if I just do nothing then I lose less. Maybe a poor way to see things but that's where I'm at.

 

[Notsupposedtobehere]

I have a genetic mental illness that has left me disabled and without any hope for the future. I am mad that my parents decided that even though nature was telling them not to pass on their poison genes that they abused science and fertility labs to make me in a test tube and force me to be here for their own narcissistic reasons. They should have adopted if they wanted a child so bad. My parents divorced because of me and I feel like they regret even making me. I'm not supposed to be here.

 

[Cleopatra123]

You and I share MANY of the same ailments and conditions. First though I want to say I'm very sorry for everything you're dealing with. :(

I too have ARFID, due to pretty much all my life (since I can remember, around 6 yrs old and I'm early 50s now) having had chronic nausea and bowel issues, for which no diagnosis has ever been given except IBS. A few GI doctors I've seen over the years have suggested I may have gastroparesis, although none have bothered to actually test for it so I can't say I DO have it. But I have many of the symptoms such as not being able to eat much, slow eating (I've always been that way, since childhood as well). I can't even begin to guess how many cans of Ensure I've had in my life to try to make up for the calories and nutrition I'm not getting from actual food, and especially in the last 3 years. I'm severely underweight and weak. Finally, I also, largely due to my lifetime of poor health but especially because of the GI pain and issues, I have many mental health stuff: depression, anxiety (generalized, social, and health anxiety....particularly about anything related to the stomach, bowels, etc), and PTSD.

Again, I'm really sorry for all that you're going through. I understand so well how hard it is. Food is necessary to live but it's also something that makes up so much of our interactions with others - holidays, celebrations, family time, etc. Having food-related trauma - ARFID - is very difficult because most people just don't get it that you WANT to eat, that you don't have a body-image based disorder but instead one formed from fear of pain due to eating. They simply can't comprehend that (at least, that's been my experience). If you ever want to chat or need an ear to simply listen, please reach out to me.

So I'm not alone in all these symptoms, and more.as you and Ophelia. I have such trauma eating, from swallowing to the end that I'm down to 85 pounds, the last of real skin seems to be melting and I'm getting sores from being in bed, sitting on a bed so old it now has hard lumps in it from morning till night. Can't sit in a chaiir, hard to walk, diagnosed with ME?CFS for 40 years and and it's eating alive most of my intermal organs, one by one. The daily grind of getting to subdue of all the systems disburances from eyes to mouth tp throat and heart and neurologically, 40 years and doctors don't believe this stuff.

I'm very sorry for what you are suffering and understand well why you are here. The only way to eliminate disintegrating life, or get any person to believe us is so painful. Death with dignity is where we need to be, at peace. Hugs to you, and all suffering with no help or resolution.

 

[Still Flutter Girl]

Is there a way for an admin to make this a sticky thread?

For those of us with mental and physical disabilities, having to search it out takes a lot of our spoons (energy).

 

[sewercide]

Dealing with illnesses/disorders can be one of the worst things about being alive. The body can become like a prison and there can be no escape from it. There is no limit as to how bad it can get so there should be euthanasia options. As for myself, I was born with neurological disorders and I have tinnitus and visual snow. I feel ill a lot of the time and after taking the medication which was wrongly prescribed my body has still not recovered from that. Life really can be a terrible thing.

I suffer from tinnitus and visual snow as a result of brain damage. Whice medication did not work for you and whice has?