Third year on the list and I've gone quiet about it. How do you keep going?

Referral went in October 2023, so I'm two and a half years in now. Second assessment was done and dusted last autumn, letter says I'm on the surgical waiting list, and since then, nothing. No estimate anyone will stand behind. The coordinator I got through to was lovely and completely unable to tell me anything.

The thing I've noticed is I've stopped talking about it. For the first year I told friends "probably next year" and now I just change the subject, because saying "still waiting" out loud makes me feel like I'm standing still in every other part of my life too. Which I'm not, mostly. But you know.

So, question for the people further along: how did you keep going through the long quiet bit? Not the practical stuff, I have the checklists. The part where you have to keep living a whole life around a date that doesn't exist yet.

No wisdom, just solidarity, I'm eleven months behind you on the same road. The "still waiting" thing hit hard, I've started saying "it's moving" instead, which is technically true and ends the conversation kinder.

Three years from referral to top surgery for me, so I've stood exactly where you're standing.

What actually helped, in the end, was making the wait contain things that were mine and didn't depend on any letter. I started voice work about a year in, sorted my documents, found a weekly climbing group where I was just Sam. None of it was a substitute for surgery and I won't pretend it was. But it meant the date, when it finally came, landed in a life that had kept moving, instead of one that had been holding its breath for three years.

The other honest thing to say is there were bad months, and one properly bad one around the two year mark. A therapist who understood the territory made a real difference there. Not because anything was wrong with me, but because carrying an open-ended wait alone is heavy, and it isn't a character flaw to put some of it down somewhere.

This thread is why the community exists, thank you all for the honesty in it.

Annika, the going quiet thing was me too. In my second year of waiting I realised the surgery had felt both certain and unknowable for so long that I'd stopped letting myself picture anything past it. What helped was almost embarrassingly small: I kept a note of which stage I was actually at and what would trigger the next one, so the silence stopped feeling like the system had forgotten me. If it's useful, the site has a plain walkthrough of the pathway, stage by stage, including which waits are normal and who to chase when one isn't.

And echoing Sam gently: if the wait ever tips from frustrating into something darker, please bring in real support alongside the forum. There's no prize for carrying it alone. We're here for the company either way.

Small update because I'd want to read one: a letter arrived last week with a date for my pre-surgical consultation in September. Not a surgery date, I know, but it's the first piece of paper with MY name and a date on it in over a year and I cried in the hallway.

Also took Sam's advice and joined a choir in May. Jury's out on my singing. Thanks all, this thread helped more than I expected.