A peer support community, independent and not for sale. Since February 2024.

GLP CircleA peer support community

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 am aware some of this may be nothing. I would still like to know whether other people have had it, because I have spent a fortnight assuming I am the only one.

I have read the guides here, which were more useful than anything else I have found, and I still have a question they do not cover.

Sorry for the length. If anyone has been here, I would very much like to hear it.

34

ObieNashville, TN
#1

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

8me too 6

NixLeith, UK
#2

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

10

KikiFacilitatorGlasgow, UK
#3

Two things, both boring. First, none of us can tell you what to take. Second, the conversation you want to have is with your prescriber, and we can help you write it down.

12

WilfStoke, UK
#4

What helped was lowering my own expectations of the week rather than trying to hold the week together.

7

TacitaRome, IT
#5

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

5

TarqWindsor, UK
#6

Building on what the reply above wrote rather than answering the original question.

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

10

TobiasHamburg, DE
#7

the reply above said something I want to sit with for a second.

I did exactly the same and felt terrible about it. You have not done anything wrong.

7

EsmeAix-en-Provence, FR
#8

Practical, boring answer: write the three questions down before you go in. I have never once remembered them otherwise.

8me too 7

Bryn MNeath, UK
#9

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

7

AnnikaStockholm, SE
#10

Yes to the burping. It is real, it is unbeautiful, and it does settle.

4

GwilymCaernarfon, UK
#11

Reading the reply above, I recognised more of that than I expected to.

I have been in this circle a year and this question comes round every few months. It is not a silly question. It is the question.

6

KikiFacilitatorGlasgow, UK
#12

I will leave this open for a few more days and then add it to the circle's resources, because the answers here are better than anything I would have written.

9

ObieNashville, TN
#13

I asked my nurse the same question and she said something I have repeated ever since: that the aim is to keep you on treatment, not to get you up the schedule.

8me too 4