For a long time, I did the one thing that quietly sabotages every IBD appointment: I told the doctor I felt better than I did.

Not on purpose. You tell yourself you feel better because that's what you desperately want to be true - and then you carry that hopeful version into the appointment and hand it to your consultant. It feels harmless. It isn't. Because the doctor can only act on what you tell them, and if you undersell how rough things really are, you walk out with less help than you needed. I learned that the slow way. This is what I wish I'd known before I did.

An appointment is not something to fear

Let me start with the thing that took me longest to feel: a good appointment is reassuring, not frightening. If you've got a doctor you get on with - one who treats you like a human and not a chart - these can be the moments that steady you rather than scare you.

Remember that they have seen it all. Whatever you're embarrassed to describe, whatever you think is too much detail or too grim to say out loud, they have heard it a hundred times. So don't be afraid to ask any question, however small it feels. In my experience most of them will give you the time and won't rush you out the door. And if it helps you feel steadier walking in, take a family member or a friend with you. You're allowed.

The mistake that cost me the most: not being honest

Here's the big one. The single most damaging thing I did in those early years was not being honest enough about how I was actually feeling physically.

You want to feel better. So you convince yourself you do, and then you pass that on to the people treating you. But lying - even the gentle, hopeful kind you tell yourself first - gets you no help. The consultant makes decisions based on the picture you paint. Paint a rosier one than the truth, and the plan you leave with is built for a version of you that doesn't exist.

You tell yourself you feel better because that's what you want to feel - then you hand that to the doctor. But lying gets you no help.

The other half of the same mistake: I had questions and I didn't ask them. I'd sit there thinking there wasn't time, that I'd be a nuisance, that the doctor had somewhere else to be - so I swallowed the question and left. I wish I'd asked every single one of those. The unasked questions don't go away. They just follow you home and sit with you until the next appointment.

What I do differently now

Two things changed everything, and neither is complicated.

I bring someone who knows me inside out. Not just for moral support - for their memory. When you're anxious and trying to describe months of your life in ten minutes, you forget half of what you meant to say. The right person sitting beside you catches the questions you miss and the things you've quietly played down. Pick someone you're comfortable with, someone who actually knows how you've really been.

I don't let myself feel rushed. Even when the clock is against you, I make sure the questions get asked. That shift - from passively nodding along to actually using the time - is the whole game.

Write your worries down before you go

This is the practical habit I'd give anyone, and it's the thing I do before every appointment now. In the days before, when a worry pops into your head, write it down. Then, before you go in, turn each of those worries into a question you can actually ask.

It sounds almost too simple, but it works because it moves the thinking out of the panicky ten minutes in the chair and into the calm days beforehand. You arrive with a list instead of a blank mind. Nothing important gets left in the car park.

Finding a doctor who actually listens

Not every doctor is the right fit, and that's allowed to matter. I saw some over the years who just didn't seem to listen - one in particular always seemed to be rushing me out, and I never felt like I was in good hands. That feeling is information. Don't ignore it.

At one appointment I was fortunate to see a different doctor, and I explained honestly how I'd been feeling - and she actually pushed for change on my behalf. That's the difference a doctor who listens makes. I also, at one point, found my way back under the care of a consultant I'd previously been moved away from. I trusted him, he's well known for being good in his field, and getting back to him mattered. You are allowed to want to be looked after by someone you trust, and it is worth quietly working towards that.

Don't get lost in the system

The NHS is a big machine, and it's genuinely easy to get lost in it between appointments. A few things I wish I'd known sooner:

Keep your consultant's secretary's number to hand - that's your first port of call when you need to get through to your team, chase something, or ask about being seen. If that doesn't get you anywhere, your GP should be able to point you in the right direction. The thread running through all of it: don't be afraid to be heard. Being politely persistent is not being difficult. It's how you get the care you're entitled to.

If I could say one thing before your next appointment

Don't be scared. These people are there to help you, and they've seen an enormous amount over their careers - there is nothing you can say that will shock them. Before you go, write down all your worries and turn them into questions you can ask. Then go in, be honest about how you really feel, and let them do their job.