Struggle With Life On The Spectrum

Hi I'm Emily. I was diagnosed early on, now in my 20s and finding life on the spectrum extremely challenging in lots of different ways. I find it almost impossible to communicate with others other than writing things down. Verbally I'm almost mute. I have sensory issues especially with pain, I'm in pain 24-7, always feel like I'm ill and dying because of the pain but I've been to hospital oh so many times and tests says there's nothing wrong. A lot of the doctors I think believe I'm just taking the piss and want the attention, that isn't the case though, I sort of wish it was because the pain at times is unbearable to live with. I also have severe anxiety, hardly ever leave the house now too afraid. Of what? Basically everything. Everything out there makes incredibly anxious. I'm so anxious now I can't even go to see my therapist. Which is a shame because I feel like she helped me a lot. My mental state is appalling. God knows what's going on inside my head but it's not good. Not sure if it's AS or something else. I spend most of my time writing. I get lost in my writing, almost go into my own little world which allows me to escape the horrors of my own life. It is a nice thing to do but sometimes I worry I won't be able to get back again. Anybody else feel like this? I've been through so much in my 20 years on this rock, seen both my parents die which was horrible and I've lost everything in my life including my daughter. I'm back out of the hospital unit determined to make things better and happier this time but I don't see it working out. Hospital is like my home now and no matter what happens I always end up there again. But I'm going to keep writing and trying to flip things over for myself. Hoping being here will help as well, maybe might be able to improve my AS as well.

...Emily.

Parents
  • Bless you. This must be awful.

    As for the hospital, you sound like you've got a sensory issue with pain. It sounds like you need a 'passport' to say you have unusual pain and can't tell if it indicates a problem or not, so that they take you seriously.

    As for the rest. You've been through a HELL of a lot. Can your therapist zoom, if she's helping. Have you any other support to draw on?

Reply
  • Bless you. This must be awful.

    As for the hospital, you sound like you've got a sensory issue with pain. It sounds like you need a 'passport' to say you have unusual pain and can't tell if it indicates a problem or not, so that they take you seriously.

    As for the rest. You've been through a HELL of a lot. Can your therapist zoom, if she's helping. Have you any other support to draw on?

Children
  • Hi Dawn. I've never heard of a passport like that before, can I get that from my doctor or is it from somewhere else? I think I do definitely need one.

    I get zoom with my care coordinator but I don't really talk to her I struggle with that. I could ask about having a zoom call with my therapist though. Thanks I will try and make that happen. No, sadly no other support. I have tried but the GP just keeps giving me medication.