My physical disability is taking it's toll on me mentally

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As an addition to autism, I also have a dangerous physical disability that affects my daily life and I need surgeries and other extreme measures to keep it under control. I was a toddler when it was diagnosed, been running in hospitals and surgeries since I can remember. As a child I didn't know the name of my condition or what it was really about, just that it was dangerous and that I needed to go to the hospital all the time if I didn't want my head hurting. When I got older, I got my hands on my medical documents and actually learned what my condition was officially called. Thanks to google, I found out how it worked (or well, what in my body didn't work, causing me to be disabled.) It was thanks to google that I also actually learned about autism, but autism and my physical disability have two major differences: for my autism, I managed to find support. For my physical condition, not so much.

In my early teens, I found this awesome, supporting forum meant for autistic people. At first I mostly read what others wrote, putting a comment in every now and then if someone said something that brought me an "aha!" -moment, but later I started taking part in the conversations, telling about myself and receiving support. Those people understood my problems, more than the people who I'd known my whole life even. I felt accepted and, which felt even more important back then, I felt for the first time that someone actually listened.

But so far I've found no such a forum regarding a physical condition like mine or any other place where to talk about it. I've tried to talk about it with my mom, but she doesn't want to, she's made it very clear. I suppose talking about it is hard for her, since it was her who mostly took care of me when I was a child and in the worst condition, but I still think she's being a bit too jumpy about the subject because it's my body that has the faults, not hers. Sure, she had it hard having to come to the hospital every day to see me, spend sleepless nights when my life was hanging off the edge but c'mon, it was me who suffered all that pain, it's me who has a never leaving fear of death now that I actually understand how this works and know that my body can give out any day in a way that healthy people don't ever have to worry about.

It makes me so mad when I google my condition and all I tend to get is sites telling about the condition on children, how it affects their entire families, how hard it is for the parents of such children. Seriously? How hard it is on the parents? I mean of course I won't deny it that the parents must have it hard, but c'mon, don't those who actually feel the pain and are in the danger of dying have it a lot harder!? It's like if someone went to war, fough for their country in the front lines and news would focus only on how hard it was for their family to be worrying about them.

Anyway, that was more like background information than anything. The real point is that my disability seems to be starting to act up again (unless this is something else, which is also a very worrying idea.) What makes it so mentally taxing is that I have no one to talk to about it. I'll try to get a doctor's appointment tomorrow, but I'm not sure it'll help since doctors tend to not take me seriously (perhaps it's because of my autism; either they see the diagnose and decide I don't really need to be listened or they don't take that in to account at all and read stuff that isn't really there from my body language and misunderstand stuff because of it.) And it's not like your normal every day doctors understand a lot about this; a specialist is usually needed. But it's hard to get an appoinment with them, not to mention expensive, and from my experience they don't exactly listen either. There have been a few times I've been in terrible pain, yet the doctors have been hesitant about operating me since the test results didn't show anything worrying. After my mom and I managed to convince them to do it anyway, their attitudes have done complete 180s after the operations, for despite what the tests showed, the situation had been freaking bad. So excuse me for not having any faith in experts.

I feel like it'd be easier to just have someone to talk to, preferably someone with personal experience on the matter, but at this point, anyone with at least a bit knowledge on the subject who'd actually listen would do. At times I wonder if I should try to get myself a therapist for my fear of death and the mental issues my condition causes, but therapy tends to be very hard to get unless you get it from a private hospital and it's expensive on both sides. Plus, I have serious trust issues when it comes to medical experts due to previous bad experiences, so it'd probably take a few visits for me to actually be able to talk about the problem to the therapist.

Ugh, sorry for ranting, just had to get this out somehow... I'm just so done with this.

Can you tell us more about the physical disability?

I am physically disabled from a spine defect, but it doesn't threaten my life. But there might be people here, including me, that could be supportive of you, if we understood what you are talking about.

Perhaps you could find a forum for a similar disability? For instance, a number of people don't have MS, but are accepted in MS forums because they have very rare diseases often diagnosed initially as MS. For normal people, that is "close enough."

this is only natural to feel strained in situation like that. related. i am a wreck at the age of 31, and cant get anything fixed, because our medicine is like "come when u die". i know how it feels. as to finding psychological support for the exact condition, well, i think everybody who is disabled for any reason, can have some understanding for other disabled ppl, no? u dont have to get exact same condition cases. informational support? cant say for sure, when not knowing what is it exactly u have. anyways, hold on. this is a hard life to live, overwhelming more often than not. still worth it for rare bright moments.

It's a little hard to explain without giving away the actual diagnosis, which is something I'd rather not do on this particular forum. One of the biggest issues during my life was that when it was time for me to choose what to study for my future career, I couldn't think about what I'd like, I had to think about what jobs would put me in as little physical strain as possible because my body wouldn't be able to handle something too physical. It has always limited what hobbies I can have as well and makes me tire out faster than an average person would. It's also a very rare condition; in my country, only about one or two people are born with it in a year, so trying to find support from someone who knows what it's like isn't really easy. There are similiar conditions caused by other things than mine that are far more common and talking with someone like that would probably help too, though.



Maybe. I've also considered trying to talk to other people who were born with something that would kill them without treatment, even if it's a completely different thing. It's just that someone who has lived at death's door all their life might be able to relate, even if it's not the same door I'm camping in front of.



Maybe some understanding, but I don't want sympathetic looks and words, I've gotten those and they don't help, I want to talk to someone who more or less knows what I'm going through, who can put themselves in my shoes, who can give me empathy. I mean logically thinking, I'm sure there are others who have the same problem, but I think that it'd really help my mental issues to actually talk to someone like me.

Someone here who comes to mind right away is EzraS. He has had severe health challenges since birth. He doesn't talk about it a lot, but it might be good for both of you to chat about this doomsday threat hanging over your heads.

that is what i was trying to say. empathy is possible without having the same condition. but maybe i am deluded, ofc. maybe its about exact level of relating. most of my issues are obtained. starting with spinal trauma at the age of 6, that gets worse with age and messes up my daily life. i've seen my fair share of hospitals, to an extent of not being able to stand them any more. i may be not what u want, i understand and accept. but if i can help, please do let me.

Yes, the bold part is the main problem. For example, someone who gets a cancer, say, at their mid twenties, can definitely relate to the fear of death on some level, but I don't think someone like that could relate with me as much as I feel like I need since they haven't had to fear it since birth and it's cureable (depending on the case of course.) My condition is under control with treatments, but it's not cureable, at least not in these times and I highly doubt any cure or foolproof treatment will be found in my lifetime, if at all.
I don't know if you could help, and to be honest I kind of doubt it... but still, I don't see how trying could do much harm. Is it okay if I send you a PM?

i had gone thru cancer at 19. i had barely escaped a couple of terroristic acts and had several other close calls. i have extensive cptsd, with earliest flashbacks predating school age. i feel pain as a norm, it doesnt go away, and sometimes flares and prevents me from moving. i sometimes dont know if i am alive or i actually did die and all i am perceiving is only a figment of my post-death imagination. i had attempted a suicide just to end that uncertainty. which only added to it, tbh. still get the cramps to try again - less with time, because of how many people are taking shifts to watch over me. i am writing all that just to provide u with level of understanding i have on NDE and impending doom. u are very welcome to my PM if that is easier for u.

Fireblossom I am sorry you have been going through such a rough patch over your entire short life. As a young child, I was kicked in the head by a large bull and knocked unconscious. My life held in the balance. My parents found me and brought my limp body back into the house and put me in my bed and waited to see if I would live or die. (That was a long time before they had 911 phone calls. I do not even remember if we had a telephone in the house then.)

Over my life I have been almost killed several times. In some ways I am like a cat with 9 lives. So although I am an Aspie, I am very different than most Aspies. The fact that I am a different Aspie is because I have developed a very unique skill. I am fearless. I can stare death right between the eyes and not flinch. And that unique skill has set me free.

My best friend has been dealing with serious health issues since her 20s. She's now 61. I can't possibly understand what either of you are going through, since I have had generally good health my whole life. I hope you can find the support and comfort you need, Fireblossum. All the best to you!

I don't think I'm in the same boat. I do have a respiratory condition that's put me in danger a few times, but for the most part doesn't cause me problems on a daily basis. My main physical disability is the motor dysfunction that needed corrective surgery, but that was elective. Then again I've been referred to as "fragile" so maybe things are worse than I acknowledge.

I can understand it if you don't want to reveal the disability. And (of course) you don't have to.

But--to reveal the disability would aid anybody in seeking to offer practical solutions.

I'm guessing, maybe, you could PM somebody whom you trust.

I know, but some people can be a little... well, just no. I just don't want many people knowing, especially since my condition is a very rare one. Someone who knows me IRL might even be able to identify me with that information added to some other things I've told here, assuming they'd read this of course.

I already did send a PM to someone. I don't really know anyone here that well, but then again, in a way it might actually be better to talk to a stranger, not that it's actually easy, but perhaps easier.