Published on 12, July, 2020
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.
I'm seriously ill with numerous health problems. I wasn't diagnosed as Asperger's but my inability to deal with stress and the continual bullying at work and some other serious events meant I developed Pan-Ulcerative Colitis. This causes a disintegration of my whole intestine leading to Sepsis, internal bleeding and a bunch of other problems.
My undiagnosed AS meant I could maintain my health much better than others with the same condition by modelling and mapping my body's rhythms. (I'm 20 years down the line where most people only manage 4-5 years).
Unfortunately, I was intolerant of all the normal meds so they quickly worked up through the range until I was on heavy Chemotherapy.
Unfortunately, this resulted with me having no immune system which made me vulnerable to low-level infections.
Unfortunately, I ended up with Meningitis which blew my brains out.
I now suffer from CFS and Chronic pain and serious memory problems now - as well as the original U.C.
I was diagnosed with Aspergers 10 years ago so I fully understand my inability to deal with stress - a bit too late.
I keep being diagnosed with serious depression, but as I don't really understand emotions, I can't work out what this means. I've been on all the usual meds over the years, but I can't function in the fog they cause so I prefer to have a clear head without them. I can't tell if the psychiatrists are projecting their own image of how they would feel in my position.
Probably seems a bit odd, but I carefully self-harm to effectively redirect my brain onto a different, real pain rather than the mentally-generated pain/despair - not that I advocate that for anyone..
Thanks for the reply plastic. Am I reading that right when I think you're saying you can tolerate more physical pain than others with your condition?
That is very interesting what you say about not really working out what the serious depression means because of difficulty with emotions, I have that difficulty too but apparently depression can manifest differently in people. That's a phrase I've heard a lot now since ASD diagnosis and I think it really means we can't fit you into any box but we know you have problems.
You're last paragraph, does that mean you also think then the experience of your physical illness is worse because mentally you make it worse? And if so, how? Thanks