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Neurodivergent members

Interoception was already unreliable and now it is worse

Started 10 January 2026 · 13 replies · 101 hearts · read 2k times

LeifTrondheim, NO · 10 January 2026
6 months ago

Interoception was already unreliable and now it is worse Writing it down partly to work out what I actually think.

Not asking anyone to fix this. Mostly saying it out loud somewhere it will be read kindly.

I have spent a long time managing everybody else's feelings about this and I have not looked at my own, and that is what this post is.

This is difficult to write and I have deleted it twice. I am posting it now mostly because leaving it in drafts has not made it any easier to carry.

That is all. Thank you for being the kind of place where this can be written down.

34

ObieNashville, TN
#1

My eating became much more repetitive and my dietitian was entirely relaxed about that, which I had braced to be told off for.

8me too 6

NixLeith, UK
#2

The hardest part was that advice kept coming in the form of listening to my body, and my body does not speak clearly enough for that.

10

KikiFacilitatorGlasgow, UK
#3

Facilitator note: this is a circle for saying things out loud, and there is no obligation on anybody to act on what they say here.

12

WilfStoke, UK
#4

I found appointments difficult for reasons unrelated to the subject, and writing everything down beforehand solved most of it.

7

TacitaRome, IT
#5

Somebody in this circle described a body that does not send clear signals, and it was the first time I had seen that written down anywhere.

5

TarqWindsor, UK
#6

Reading Wilf, I recognised more of that than I expected to.

What I got wrong was assuming I would remember. I do not remember. Everything that works for me is written down or automated.

10

TobiasHamburg, DE
#7

Tacita — yes, and the bit that took me longest to accept was the next part.

I would say build the structure before you need it. I improvised for three months and it went badly, then I built a system and it has held for two years.

7

EsmeAix-en-Provence, FR
#8

The thing I could not do was notice a symptom in the moment. I could only notice it in retrospect from notes, so notes became essential.

8me too 7

Bryn MNeath, UK
#9

What helped was making everything the same. Same day, same time, same order, same place, and removing every decision I could.

7

AnnikaStockholm, SE
#10

My ADHD medication and everything else needed a proper look at together, and a pharmacist did that better than either prescriber had.

4

GwilymCaernarfon, UK
#11

What Bryn M described happened to me too, in a slightly different order.

I would gently say that if you need things explained differently, ask. Mine were, once I asked, and the appointments improved immediately.

6

KikiFacilitatorGlasgow, UK
#12

Adding this thread to the circle's standing resources, with the poster's permission, because it says something better than any guide has managed.

9

ObieNashville, TN
#13

My experience is that the medical part has been simple and the logistics have been the entire challenge.

8me too 4