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.
Hi there,
I can relate to some of the items mentioned in your post. I have recently been diagnosed with NEAD (Non-epileptic attack disorder) and suffer with chronic fatigue as a result. I also suffer with chronic asthma and digestive issues as well. Like you I managed my breathing and digestive issues much better than most people - it was only when my symptoms reached a point where I could no longer manage them that I sought medical intervention.
The most recent diagnosis of NEAD has been the hardest as the effects of the condition can be debilitating. You suffer the seizures and auras of epilepsy, but cannot be treated - sensory processing also becomes very heightened and you have to battle just to carry on each day. This has taken its toll on my and I now have to take Mirtazapine (other medications have been disastrous in the past due to be very sensitive), which doesn't solve the problems with anxiety but does make them manageable for most of the time. The worst bit about all of this is exercising and being outdoors used to make me feel great. I coped with stress and anxiety much better, but having NEAD means I never know when I have an attack and the fatigue sometimes means I cannot leave bed on some days. I have become unfit and feel unwell, but there is no 'cure' or anything I can do to feel better. My biggest wish is to be able to exercise regularly again and be fit and active.
CFS is a real problem. I hate having to ration what I do because of it - but other people can't see the times when I'm asleep or wrecked and non-functional, they only see me when I go out to social events and I'm bright & bouncy so I seem absolutely fine to them. The fact I've had to 'save up' some energy to spend it on going out means nothing to them. I've had to 'not do' neccessary things and arrange my life to give a few hours to them instead.
On the other hand, if I didn't do that, I'd be stuck in the house too much - so it's a fine balance.
I think there definitely needs to be more awareness of this and what saving energy up really means to someone on a day-to-day basis. I am becoming all to familiar with seeing comments online that judge people because they don't 'look ill enough' or they claiming someone is exaggerating their symptoms - the scrounger lifestyle seems to be a stereotype that gets thrown around way too easily.
I watched my dad battle Fibromyalgia, ME as well as other spinal and neurological conditions. Because he would save up his energy so he could go out for a couple of hours at the weekend, he was accused of being a benefit cheat by some locals and was also physically threatened.
It makes my blood boil when you hear these same people saying that a disability shouldn't be debilitating, but then they criticize those with potential hidden disabilities that are trying to make the best of their life and contribute towards society. You just can't win.