Thread by @NortherlyRose

#Thread
Why it’s sometimes difficult to know how unwell I am.
A personal autistic perspective.
I’ve been feeling rotten since Sunday, with some kind of respiratory illness.
After 3 years of respite from colds and flu it came as a bit of a shock.
I haven’t had Covid yet either.
1/

I wasn’t too worried to begin with, as my partner was ill before me.
After 2 or 3 days he started to feel better, and I assumed I’d be the same.
Unfortunately I’ve been getting steadily worse.
Less energy.
More coughing.
Less desire to eat.
More sleeplessness.
Strange pains.
2/

I’m almost always in some kind of pain so that in itself isn’t a reliable indicator of being unwell.
Nor is severe fatigue, which occurs so regularly it seems normal.
I rely on objective symptoms like fevers, rashes and swellings.
Tests are a bonus, if they are available.
3/

I feel relieved of the responsibility of describing my symptoms accurately if someone can diagnose me based on a swab, or some kind of examination.
I’m haunted by a history of conditions which perplexed doctors and only made sense once I discovered I was #ActuallyAutistic
4/

Proprioceptive and interoceptive differences can have a profound effect on how we experience things as autistic people.
We’re more likely to have some co-occurring conditions too.
We may react differently to medications.
None of this is well understood, and so we struggle on.
5/

I can be both hyper and hypo sensitive to touch, depending on the circumstances, and the same applies to pain.
This sometimes makes it difficult to gauge exactly what is going on.
So often medical assessment relies on our ability to describe what we are feeling, and where.
6/

I often feel like a poor witness when I try to describe my symptoms.
I’m aware that I’m being a bit tentative and non-specific.
It sounds confusing, and it is.
Since discovering I’m #autistic I tend to tell #medical staff I find it difficult to know how unwell I actually am.
7/

This encourages them to take a more proactive approach where they examine me rather than relying on how I think I’m feeling.
In the past I sometimes got very unwell without realising it, ending up at hospital with preventable problems.
Some of that was due to avoiding doctors.
8/

Too many inconclusive consultations about mystifying symptoms had left me feeling like a hypochondriac.
Rather than keep putting myself through this, I avoided going to the doctor as much as I could.
I still went to screening checks, as they were largely communication free.
9/

The other kind of medical consultation often ended up in confusion and frustration due to lack of insight into how being autistic affects health, wellbeing, and communication.
I particularly disliked it when my GP asked what I wanted them to do, without giving me any options.
10/

I felt like replying “how on earth should I know?”.
It felt like they’d reached some kind of impasse and expected me to find my own way through.
I probably heard it as a dismissive “what do you expect me to do?”
Was I being unreasonable in asking them to offer me assistance?
11/

I frequently felt like a ‘heart sink’ patient.
I longed for clearly defined, easily resolved complaints.
But mine were often nebulous and recurring.
It’s hard to be a good patient.
Getting the timing right.
Not presenting too early, or too late. Giving an accurate account.
12/

At my local medical centre things are gradually improving.
They’ve introduced an e-consultation form.
I used it earlier this week to request a change of dosage for menopause hormone treatment.
The response was still a random phone call, but the GP already knew what I wanted.
13/

And yesterday morning I sought advice on my respiratory illness.
I got a phone call from a final year medical student.
I didn’t feel rushed, and I explained how difficult it can be for me to know how unwell I am.
As a precaution they made me an appointment to be seen today.
14/

They said that if I felt better I could cancel the appointment, but if I felt worse I could go and be examined.
I’m feeling so ill right now it’s reassuring that I’m going to be seen.
I no longer feel like I’m wasting their time.
A precautionary approach is perfectly valid.
15/

I’ve had a flurry of medical appointments recently, including a referral to a dental hospital.
It was such a shock to find myself in a huge open plan treatment room with cubicles which only had waist high walls.
No privacy at all.
To begin with I was almost unable to speak.
16/

Once I’d explained how difficult it is for me to give an accurate account of my history, or make decisions, when feeling so stressed, things got better.
Because I’m autistic the consultant said they would extend subsequent appointments to allow me some more processing time.
17/

There seems to be a bit of a sea change happening in terms of autism awareness in medical settings.
I hope this is a general trend and not unique to my locality.
It makes such a difference to be able to seek medical advice with confidence, rather than fear and anxiety.
18/

I’m pretty sure what I’ve got at the moment is a standard respiratory infection.
I’ve been checking my blood oxygen levels with a pulse oximeter which has been reassuring.
Although I feel very breathless, my oximeter readings are only down a bit.
A Covid test was negative.
19/

Here’s a good booklet on how to use pulse #oximeters.
It’s in easy read format which is so much more accessible in my current sleep-deprived state.
The clinicians who assess me are often exhausted too, so clear communication is especially important.
england.nhs.uk/coronavirus/wp…
20/end

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