Hiding it, and being tired of hiding it

Started 1 February 2025 · 22 replies · 228 hearts · read 3.3k times

IkeChicago, IL · 1 February 2025

1.5 years ago

Hiding it, and being tired of hiding it Writing it down partly to work out what I actually think.

I have avoided asking about this for six weeks out of pure embarrassment.

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.

What I would find most useful is not advice. It is somebody describing what their version of this was, and how long it went on for.

What I keep tripping on is not the physical bit. It is the not knowing whether what I am experiencing is normal, and having nobody to ask who is not either selling something or frightened for me.

Thanks all. Genuinely.

PerrinNice, FR

I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.

GudrunAkureyri, IS

No advice, just recognition. That sounds exhausting and I am sorry you are in it.

11me too 3

AdaFacilitatorManchester, UK

If any of this has landed close to home for you while reading, our support resources page lists the kinds of services worth finding. No obligation and no drama.

FabianBasel, CH

the opening post said something I want to sit with for a second.

Different experience here, for balance. Mine did not improve and in the end I stopped, and that was the right call for me. Both outcomes exist.

MarthaCork, IE

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

OsmanAnkara, TR

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

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.

WystanCheltenham, UK

My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.

MairéadMayo, IE

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?

NyreeChristchurch, NZ

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.

NyalaAddis Ababa, ET

#10

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

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

EphraimBrooklyn, NY

#11

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

Two things that helped me, neither of them clever: small amounts more often, and drinking a lot more than felt necessary.

BlySheffield, UK

#12

I would take that to a clinician rather than to us, and I would do it this week. Not because it is definitely serious — because it is the sort of thing that is much easier to rule out than to worry about.

OttoPrague, CZ

#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.

9me too 5

CoralieMarseille, FR

#14

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

Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.

AnnikaStockholm, SE

#15

The phrase that unlocked my appointment was asking what specifically she wanted me to watch for. It moved us from reassurance to a plan in about thirty seconds.

MargueriteQuebec City, CA

#16

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

DillyNewport, UK

#17

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

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

WinnieCarlisle, UK

#18

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.

IkeChicago, IL

#19

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

11me too 8

PerrinNice, FR

#20

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

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

AdaFacilitatorManchester, UK

#21

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.

GroverPortland, ME

#22

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

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.