The shame was the worst side effect

Started 18 June 2026 · 13 replies · 79 hearts · read 1.4k times

InêsPorto, PT · 18 June 2026

1 month ago

Starting a thread on this because it keeps coming up in ones and twos: The shame was the worst side effect

Writing this partly to ask and partly because writing it down usually tells me what I think.

The thing that has surprised me most is how much of this is about other people rather than about me.

Here is where I am. The medication side has been more or less as described, and the part nobody prepared me for is everything around it: what to say to people, how to plan a week, and how to tell the difference between a thing to endure and a thing to raise.

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

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

NikolaiSofia, BG

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.

AurelBucharest, RO

Please do not read the comments under news articles about this. I lost a fortnight to that.

BenediktFacilitatorVienna, Austria

Before anyone offers a remedy: what has been described here is on the list of things that need a clinician today rather than a thread. I am going to be firm about that, kindly.

MableBolton, UK

Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.

3me too 8

Gwen DAberystwyth, UK

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.

BobbieRochdale, UK

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

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

NerysRhyl, UK

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

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

ZoraSarajevo, BA

My experience was very boring, which I offer as data. Some of us just get a dull time of it.

InêsPorto, PT

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.

6me too 6

NikolaiSofia, BG

#10

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.

AurelBucharest, RO

#11

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

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.

BenediktFacilitatorVienna, Austria

#12

Noticing out loud that this conversation has drifted into comparison. That happens without anyone intending it and it does not help anyone. Let us come back to the person who asked.

MableBolton, UK

#13

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.