Anyone Coping with Chronic Physical Illness when you have ASD

Hello Everyone

I would really like to learn of how other people cope with long term physical illnesses and how you feel your Autism impacts, if any, on your ability to be able to cope with it physically and mentally. For example, do you think you are more sensitive to pain? 

I have been ill a long time, 20 years now, but only diagnosed recently with Autism Spectrum Disorder.

For me, I feel if I hadn't have become ill I probably would never have been diagnosed with ASD as getting ill completely ruined my life and changed my personality, it also hugely changed my ability to be able to cope with stress as being extremely physically active was my coping mechanism (in retrospect). What I'm trying to say is that  before I got ill I could take or leave socialising, I liked it sometimes but it was not something I was able to sustain 24 hours per day 7 days per week. When I read of people with ASD being depressed because they can't socialise, that's not why I'm depressed and I'm worried my health care worker just isn't getting this.

I feel I've never come to terms with losing those physical abilities and every single day I have to live with awful physical symptoms and fatigue, both physically and mentally. I never get a break from it, my body never feels comfortable. 

I had several years of being on several different medications to try to help with the symptoms but eventually came off all of those as I was starting to get problems with side effects and interactions. So I always feel trapped in that whatever I try to do is no good. This causes me a great deal of depression, more so than having the ASD, that is my opinion anyway, but my health care worker keeps saying how now that I'm diagnosed with ASD perhaps this will help with the anxieties and then if that's reduced with the depression. I keep trying to tell them I think our interventions for the ASD will be limited unless I can get help for the depression because of being physically ill.

I've been told I can't get counselling for this on the NHS because of the ASD and the only counsellor they do have didn't really do much for me and those difficulties also contributed to the ASD issue being raised.

I had CBT through the NHS in the past for an eating disorder which was really good, it stopped the behaviour. I can't remember a lot of what it was we did, but it worked.

My depression also doesn't affect me in a 'typical' way, I don't lay around on the couch, I do as much as I can, but all the while just feeling utterly depressed and what the point of it all is.

Tried numerous drugs for depression, extremely sensitive and make me feel worse or a lot more anxious.

Parents
  • I'm sorry you have to go through all this.

    I've got no diagnosed physical illnesses or disabilities but have had physical problems for years. I struggle to digest most foods, including ones people wouldn't expect. I have weak muscles. Even kneeling on a floor for 10-20 seconds is painful. 

    I feel more vulnerable because of the physical issues. I've met people on the spectrum who are physically strong and notice they're more confident than me.

Reply
  • I'm sorry you have to go through all this.

    I've got no diagnosed physical illnesses or disabilities but have had physical problems for years. I struggle to digest most foods, including ones people wouldn't expect. I have weak muscles. Even kneeling on a floor for 10-20 seconds is painful. 

    I feel more vulnerable because of the physical issues. I've met people on the spectrum who are physically strong and notice they're more confident than me.

Children
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