I am just so tired of living. There is nothing here for me. I had to be home schooled the last year of high school due to finding out I have a rare genetic disease. The main symptoms are major organ failure and extreme burning pain in my hands and feet. I have only met one other man like myself with this disease in person. Not being able to do all the stuff I enjoyed my best friend grew apart a just quit associating with me completely. I was in the hospital a lot due to the pain and kidney failure. Now I have to be on disability which I hate. It’s embarrassing being on disability being this young. I should be out working like everyone else. Seeing as my disease is all internal and doesn’t effect my looks people just stare at me when they find out im disabled. 23 yrs old disabled and still living with my parents, no wonder I don’t have a girlfriend now or probably ever. I have one friend and I don’t see him very often anymore. Still seeing a lot of doctors since the transplant, which I wish I never would have had. My doctor don’t even hardly understand this disease or how easy it is to have a pain attack. I’m on 20 pills a day just to keep my pain, transplant and health barely controllable not to mention the 4 hour infusions at the infusion center every other week for the rest of my life. This is overwhelmingly tiring. A life of pain and loneliness just isn’t worth living. All my friends are gone and moved on. I see everyone on facebook out having fun, going and doing adventurous stuff, moving on in their careers and dating. The women that where in my life don’t even know I exist. I just want to be loved. I never really get to socialize with anyone. I have absolutely zero purpose in life. I have ended up a nobody. I have just about had all I can take and im very close to my breaking point.
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I’m so sorry your going though that. My heart goes out to you. I wish there was more I could do to help. Suffering is the worst thing that ever befell mankind. Nobody should have to suffer or go though what your going though now.
I see your from WV. I live here too – born and raised in the statistically the most unhappiest state in the union. What part of West Virginia do you live at if you don’t mind me asking?
Between Charleston and Spencer out away from the city’s though.
I live about 20 miles from charleston
I live about 40 min out from Charleston. Small world.
Very small world! So far 3 West Virginians in here. Not suprized because a study said that we are the most unhappiest state in the union. Alaska however is the happiest state. All those Bible Belt states are miserable. The “godless” states seem pretty happy. Makes ya think huh? I use to be a miserable Christian way back in the day…now I’m a miserable atheist. The only thing that never changed on my psychological resume was my state of mind.
As for me I’ll be gone soon. Maybe we can be friends until the time comes
I like WV as long as im not living in a city. Yeah sure.
I am sorry. You didn’t deserve this
Hey a 3rd from WV! I was born & raised in Morgantown but amy living in Chicago since my grandma passed away.
Btw I was disabled at a young age too. At 20 I had a surgery that they didn’t want to put me to sleep for so they spent 1.5 hours trying to cut a hole in my back so they could see where to put the needle. But they failed and left me unable to walk for several months. That was 17 years ago and I can barely walk or stand. But I never got disability for it. I’m starting to think you have to be born male to get disability. I know so many men who are on disability and it’s so easy for them to get. But I’ve never heard of a woman getting granted disability or SSI. Sorry but this system pisses me off. Being born with a vagina is a curse. I’m pretty sure I’d have disability if I were a bio male. Sure it sucks to be disabled at a young age and have your life taken away in that sense, but think if you were a girl and didnt get disability, once your relatives pass away like mine did, you’d be left homeless like I have been. I guess I’m glad I’m out of WV though.
I suffer from chronic pain too and doctors have no idea what is wrong with my body because apparently everything seems normal. I understand how tough it when not even the professionals can help you and how never getting proper help can damage not only your body but also your mind. I’m so sorry that you’re in so much pain. You’re not alone.
Oops… It can be* I am starting my day without typos and paying attention to what I type as you can see.
Hi, Tristeza. Sorry if I’m being nosy, but do you have any other symptoms as well as the pain?
Don’t worry, you’re not. Sometimes when my pain is very intense and active I can’t walk and I get very weak, but usually no, it’s just the pain. Feels like I’m wearing a “belt of pain” (that’s how I always describe it). The left side of my body hurts more though. I was tested for everything you can imagine and doctors used to think that my problem was gynecologic but apparently it’s not as I’m “normal and healthy”. Now people think that my pain has no physical origin and is caused by my psychological problems. I don’t buy that though, I know it’s physical…it’s too real to not be physical.
I was just wondering because I was diagnosed with ME last Christmas, and since then I’ve come across quite a lot of people with fibromyalgia. It sounds very similar to ME, except pain is the main symptom (which not everyone with ME experiences). I might be way off base but I thought I’d mention it as more people have been diagnosed with it here in the past few years, but loads of people with ME/fibro are still misdiagnosed, and different countries have different levels of awareness (some better, some worse). Studies have shown all kinds of abnormalities in the bodies of ME and fibro patients, but because they don’t show up in many tests there are still doctors who refuse to believe it’s any more than a psychological problem – and others who are just ignorant about the condition. I wanted to mention it, just in case. 🙂
Trix, maybe two or three weeks ago I was talking to one of my coworkers and she said “maybe that’s fibromyalgia?” I remember that a few years ago I thought that that could be my problem, I read about ME and fibromyalgia, but I had no idea what to do back then.
I totally forgot about that… Maybe that’s not my problem, but still… Thank you, your comment was very helpful. Seriously. I’ve been in pain for years (almost 7) and I avoid doctors and hospitals like the plague since they disappointed me so much; I do that to protect myself, to protect my sanity, but I’ll try to learn more about that…maybe I can try to lessen my pain somehow. I think I’m too depressed to really look for medical help at this point (partially because I think I deserve being in pain, go figure) and another failed attempt to find out what’s wrong will drive me to the edge again, I know myself… But reading your comment gave me a bit of comfort, idk…
I’m crying so much now
With ME they take blood tests, brain scans etc (depending on your symptoms) to rule out anything else, and you need to have several of a list of major symptoms – so it’s mainly diagnosed by eliminating other health problems. I’m guessing fibromyalgia is similar. There are people who want to start differentiating between different groups of ME patients, because people get it for different reasons and it covers so many different symptoms that one person’s condition can be really different to another case of it. And because it covers so many symptoms and there are no real tests, you can never be 100% sure that it’s the same condition. Both of them are difficult to find treatment for, but if you think you might have it then I guess you can at least look into things other people have tried and see what’s out there. And if you have a diagnosis it can be easier to find doctors who will take you seriously and try to help. Really sorry to hear you’ve been ill so long.
Did I make you cry?! Sorry! I’d give you a big hug if I could.
I’m so scared. No, I am terrified to be disappointed one more time. Idk how I’d feel it my pain finally had a name and that finally people would acknowledge that I’m not crazy… Getting the right diagnosis is almost impossible, I know that… Idk what I’m going to do or if I’m going to do anything. I’m in pain all the time. Idk how to live with this anymore. Thank you, Trix.
You did but it wasn’t your fault, I’m crying because idk what to do. It feels good to know that someone knows I’m in pain *hugs
I forgot to mention too that my hands always hurt but I think that may be a consequence of writing and typing all the time (also, my mom has the same problem)
I really, really feel you, I know it can be so hopeless sometimes when it just goes on and on. People who think you’re crazy aren’t worth listening to – I can’t believe people can disregard someone’s experience like that, especially when it affects them so badly. I hate to think of you being in pain, but it makes feel a little better after a horrible day to talk to someone else with a long-term illness, especially one people can’t see or easily understand. Just to know that someone else understands. I know how much you must want to escape from it. I’m really sorry if I suddenly made it more overwhelming for you by talking about it all.
Don’t worry, please. I think that crying was good… I felt a lot better. Thank you for your words xx
I’m so sorry you’re suffering like this. You don’t deserve a life of pain, and you shouldn’t have to be so lonely. I don’t have to go through anything like what you have, but I’ve had the same experience of everyone my age seeming to move on while I can’t, and I know that alone is a terrible feeling. Having an ‘invisible’ disability is so hard, and it isn’t something you should have to cope with on top of your pain. I’m here to talk to if you want, as I’m sure many others are.