A thread about #autism and #health #anxiety.
I didn’t know I was #autistic until I was nearly 59. But by the time I was in my mid-twenties I knew I was probably more anxious about my health than most other people.
#AllAutistics
#ActuallyAutistic
1/

The reason I knew I probably had some heightened health related anxiety was that (back in the old days before Google was invented) I would phone my mum and ask her to look up my symptoms in her Family Health Encyclopaedia.
#autism
#autistic
#AllAutistics
#ActuallyAutistic
2/

When my mum gifted me her Family Health Encyclopaedia, so I didn’t have to keep phoning up, it occurred to me that health anxiety might be a thing for me. What I didn’t know way back then was that I was actually #autistic.
#health
#autism
#anxiety
#wellbeing
#AllAutistics
3/

Knowing what I know now about #autism related sensory issues, proprioception, interoception, as well as the discrimination autistic people often experience, I’m not surprised I felt anxious. I was living in a body and world that didn’t make sense to me.
#autistic
#AllAutistics
4/

I was a heart-sink patient when doctors couldn’t find anything wrong with me. I got a rapturous reception if they could write me a prescription for an easily treatable physical condition. I felt like a nuisance and a hypochondriac. I knew what I was feeling didn’t make sense.
5/

In my early 30s my medical records were sent to me for verification after my GP was arrested for fraud. I was horrified, not just by the falsified entries, but by the number of genuine unresolved #health issues I’d had. This only made sense to me after my #autism #diagnosis.
6/

With hindsight I see how stress often manifested itself in physical conditions. Gastric and dental problems, visual disturbance and blurred vision always tended to coincide with life events. And I know why I didn’t realise I was seriously ill until it was pointed out to me.
7/

I probably seemed like a time waster when audiology tests didn’t explain my inability to hear. I never considered Auditory Processing Disorder and nor, it seems, did they.
My sensory sensitivity alone should have alerted them to significant differences and flagged up #autism.
8/

When I became a #parent I had my children’s health to worry about too. I had to try and steer the same difficult course between over and under reporting. And there was no internet or @MumsnetTowers to consult with back then.
#autism
#autistic
#AllAutistics
#ActuallyAutistic
9/

I ended up working on mental health issues professionally while managing my own mental health issues. It was a struggle. Being autistic and undiagnosed meant I had no explanatory framework for meltdown, shutdown or burnout. What on earth was the matter with me? I felt feeble.
10/

Putting my effort into trying to be more like other people wasn’t the answer. I needed to know my differences were real, legitimate, and not defects. The medical model that we get diagnosed by isn’t terribly helpful. It labels us as having a “disorder”.
#autism
#AllAutistics
11/

While #autism itself gets medicalised, actual physical health issues that sometimes seem to go along with being autistic often don’t get a look-in. I’d love to know more about how my recurring gastric and balance issues connect with the fact that I’m #autistic.
#AllAutistics
12/

It was only in my 50s that I had more serious health issues to contend with. The impact of developing Dupuytren’s Disease in both hands was enormous because it threatened the things I enjoy doing most. I found it hard to imagine not being able to drive, or draw, or garden.
13/

With an unclear prognosis and imperfect treatment ahead the future seemed bleak. I ignored the GP who told me to wait until my fingers contracted and enrolled on an NHS Dupuytrens radiotherapy trial. While I was being zapped my partner was in a hospital two hours drive away.
14/

I did well to have 2 courses of radiotherapy and only one meltdown considering everything that had been going on. My partner had had 6 episodes of respiratory failure, 5 ambulance calls, 2 hospital admissions and a final dash to A&E driven by me. My anxiety was off the scale.
15/

It took a long time for a diagnosis to be made and I watched my partner nearly die of respiratory failure on several occasions. The legacy of this terribly stressful time was health related trauma. Unsurprisingly the Covid pandemic has acted as a massive trigger for anxiety.
16/

Like many relatives of people who are shielding I’ve tried to carry on going out to work. I monitor Covid statistics and health and safety guidance as if my partner’s life depends on it. But being ultra vigilant and social distancing from him when I’m at home takes its toll.
17/

In many ways my anxiety is rational and proportionate. The end is in sight, but so far away. Even as the risk level is coming down in our area I’m bracing myself for a Covid post Christmas spike. It’s being forecast and it’s virtually inevitable so I feel justifiably anxious.
18/

Health anxiety seems to be intrinsically connected to the fact I’m #autistic. Anxiety itself is a well-recognised co-occurring condition and autistic people in general tend to have poorer health outcomes. My health would be improved by addressing my anxiety about it.
#autism
19/

I’d love a health appointment where I set the agenda. A tick box practice nurse health check with standard follow up letter didn’t improve my wellbeing at all. If anything it made me feel more hopeless. Lots of things related to being autistic aren’t medical, but some are.
20/end