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.

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  • 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

  • Hi - I've no idea how other people experience pain so I can't compare that.  I'm the only one experiencing my pain so I'm the only one who knows how much I can tolerate. The pain used to come and go in sympathy with the UC flares so it was a good indicator of the severity of the flare. 

    Since the brain injury, I'm in that pain all the time. The best analogy is if you imagine falling down 10 flights of concrete stairs bashing every bone, muscle, joint and straining everything at the same time. Similar to the pain when you bash your knee on a low table as you walk by - it's a deep pain that is inside and you can't hold it to get relief. 

    Another problem is the huge doses of steroids over the years ripping Calcium out of my bones and depositing it in my muscles. It means I have Osteoporosis and my muscles are solidifying. The bone fractures are painful too - ribs hurt like a *****.

    Some people are genetically pre-disposed to certain conditions and UC is normally triggered by stress. (stress does terrible things to the digestive system). My total inability to deal with stress and anxiety normally (like most of us) meant it was onlty a matter of time before my body gave out.

    Most people with UC (as extensive as me) only last a few years before major surgery because they accidentally mis-manage themselves. When you end up in A&E and intensive care too many times, decisions have to be taken to save your life.

    The surgery often has serious, life-long complications and I'm not sure I can mentally accept the body image of being hacked around like that.

    Depression is another personal thing so it's impossible to truly put yourself into anyone else's place to feel like they do and compare.

    You ask if my illness is worse because I'm AS? I don't know - maybe - but my AS 'superpower' of being able to accurately measure and track my body means I'm able to maintain my health better than most. The fact I'm here with all my bits still in me and not in a stainless dish would seem to prove that.

    I'm so far off the consultant's graphs that they don't know what to do with me - I'm unique - so they are relatively happy to let me manage my own health and they free-issue whatever drugs I need to keep myself going.  They keep trying to push me onto Biologics but they understand my reluctance to risk my body again.

  • Yes - I've seen a similar program about a bloke with cystic fibrosis using pain to make his life bearable. It's amazing how you can take advantage of your body's systems to keep you going.

  • Managing sensation and pain  is a fine art, it takes understanding .

    I once watched a programme where it had a man paralysed from the neck down. As he lay doing nothing every second of every minute of the day, he decided to watch hundreds of medical footage to fully understand all parts of the human body.

     He finally managed to control his hand and arm by shear belief and using his muscles as the wiring to send signals. He pictured every single part of the journey from mind to muscle, if he stopped thinking his hand would suddenly just drop.

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  • Managing sensation and pain  is a fine art, it takes understanding .

    I once watched a programme where it had a man paralysed from the neck down. As he lay doing nothing every second of every minute of the day, he decided to watch hundreds of medical footage to fully understand all parts of the human body.

     He finally managed to control his hand and arm by shear belief and using his muscles as the wiring to send signals. He pictured every single part of the journey from mind to muscle, if he stopped thinking his hand would suddenly just drop.

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