I don't understand people

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I have a disability that is so incredidibly rare that as far as my doctors and therapists know, I am the only adult alive with it like possibly in the entire world. In fact, after talking about it very openly for nearly nine years, I finally met one person who knew one person who possibly may have had this. Of course, as would be expected with this issue, that person unfortunately passed away at a very young age.

So today someone (not the person I mentioned above) said to me, "Why don't you start a support group for people like you?"

Does anyone else see the problem here?

Lol!

Well...if you cant start an in-person real life meet up support group (like AA, or like an autistic adult support group in our town) you might start an online website. The few and far between folks with this thing you have might be able to start an online ...community...or at least an online coffee klatch. The point being that the internet enables you cast a wider net to catch more rare individuals.

We could have our meetings in the cemetary! We'll take roll count, 1,

I guess it might be easier to cast a net if this condition actually had a name

The other difficult thing about it is that if you have it, it's incredibly difficult to know you have it. Unfortunately the cause of death with this usually happens at such a young age that it's very difficult to catch. And it's not the kind of thing that parents will notice. The cause of death is pretty much always teen suicide. It's a psychological issue and it can be so subtle to onlookers that no one has any idea it's there. And the kid who has it usually has no idea. And it's so incredibly rare that it's not anything anyone would think to check for. In fact, most of the doctors and therapists I have spoken to did not know about it.

A friend of mine was quite blind, and was walking home one night when he came to a place where the sidewalk had been dug up, leaving a hole about 3m deep. Sawhorse type barricades had been used as a fence around the hole, with flashing amber lights on each. However, there was a gap wide enough that my friend walked straight through. He was not badly injured, and managed to climb out and get home. However, he was on the phone to complain to the City at 8:00 AM, and the fellow at the works yard must not have had his coffee. After getting the gist of the story, he exclaimed "Well, if you're blind, you shouldn't be walking around at night anyway!" My friend did not calm down.

What a ridiculous thing to say! I am just glad your friend was not badly hurt and was able to get out of the hole

Wait are you serious about being the only one with the disability or were you being sarcastic about autism?

I just have a undefined condition outside my autism and mental issues, so was just curious about if you are serious about having some weird condition or just joking.

I didnt wanna pry...but is this an actual medical condition? If so then how can a recognized medical condition not have a name?

I keep thinking about how...in this "wonderful" internet age folks with sick kinky kinks...like being sexually attracted to children in wheelchairs ... who had to suffer alone back in my day thinking that they were only ones with the said kink... now...can find others like themselves...and form a [yuck] "community" with others of the same kink.

So surely you can find others with this condition. But if the condition doesnt have a name then that would be a problem I suppose. I was thinking that you could set up a website dedicated to this thing.

We could have our meetings in the cemetary! We'll take roll count, 1,

I am serious. This is separate from my Autism.

it's psychological.

From the research that I have personally done and from talking to my medical support team and my therapists, I am pretty sure that this is not a known or recognized condition in the medical or therapy community. It's really that rare. We only figured it out with me after several years of things not quite adding up in my therapy and how I process psychological and emotional trauma. It's a psychological/emotional processing thing.

I used to think that whatever issues I had were completely unique and no one else had them as past doctors did not seem to know what the issues were and when I tried to describe things they kept jumping to conclusions which were not the same as the symptoms I was getting. It is only since I have joined this site that I have worked it out and it is spot on.

It came as a real surprize to me that my very unusual and unique personality had quite a lot of autistic traits mixed in. This may not mean I am on the spectrum, or I may well be on the spectrum. I am waiting to see.

I can totally relate though to what you have been feeling Skibum because in the past with previous doctors, they thought I was some sort of hypercondriact and they refused to listen to the issues I was facing, even though the issues meant I was often out of work and unable to sign on (I should have been off sick during those times but as I did jot have something that doctors could label, they would not do that as their system does not allow people to be classed as ill or sick unless it has a specific label. If I had said I was a hypercondriact I could have been off on sick! But I am not because the worst place for me is a hospital or a doctors surgery because they are enviroments which trigger shutdowns, but past doctors would not listen.

I totally understand what you saying. This is different in the sense that every doctor and therapist actually believes me. It was a psychologist who actually figured it out. I had no idea because it has always been my normal. It was like when I found out I am Autistic. That was my normal. I had no idea that I was Autistic. I wasn't looking for it just like I wasn't looking for this. I was pulled A-side by a friend one day who said, "Do you know you are on the Spectrum?" To which I replied, "What's the Spectrum? " I had never looked at or even known to think of Autism before that day because it was my normal. Same with this.

When the therapist told me, I had no idea what he was talking about. But once he explained it, just like when I found out I was Autistic, I understood and for the past few years I have been learning how to understand it more deeply in myself and I am learning how it affects me neurologically.

So this was never about me trying to convince doctors and therapists that I have something and neither was my Autism or my Misophonia or my hypertonia or my catatonia or my narcolepsy or any of the other issues I have. These were all very normal to me so I never thought that I should ask any medical professionals or therapists about them. Once they were pointed out to me by other people and I was told, these things aren't normal and you need to look into them, that is when I started looking into them. Otherwise I would have never even thought to bring them up.

I used to think my Autism, misophonia, and hypertonia were unique to me until I learned about them and then came here.

This particular issue is unique to me as far as the people in my support system know. I don't just think it's unique to me, we actually know that this is incredibly rare and that anyone who might have this, in all realistic likelyness, will not survive their teen years. Every doctor, therapist, and disability lawyer I have ever had cannot understand how I manage to survive. So as far as we know (my support team) and as far as the personal research that I have done over the past near decade, I have never ever heard of this mentioned anywhere by anyone. The only mention of it I have ever heard of someone possibly having had this was the one person whom I learned about last night. And, of course, there is no way of knowing for sure because he is deceased.

Interestingly enough, I have even talked about it on WP years ago and not one single person responded. So we (my support team) think that because I am the age that I am, it might actually really be unique to me.