When the Appointment Goes Right: Lessons from 15 Years in the Waiting Room

What one rare, positive hospital visit taught me about advocacy, endurance, and hope

Last week I sat beside my daughter at yet another hospital appointment — one of countless we’ve attended over the years. As usual, I carried that quiet dread that things might not go well. Too many times we’ve left feeling deflated, unheard, or more confused than when we arrived.

But this one was different. It was, against all expectations, good.

Now, it’s important to know that my eldest daughter is no longer a child. She’s 20. But she had asked me to come with her — as an extra pair of ears, as someone who could fill in gaps in her history, and, perhaps most importantly, as a steadying presence to keep her focused on what she wanted from the appointment. It’s so easy, even as an adult, to be swept along by the authority of a medic or the weight of a diagnosis.

From the start, things felt different. This was her second appointment with an exceptional doctor. It was half an hour full of genuine listening and meaningful conversation. We all discussed, explored, questioned, and finished with a clear, shared action plan.

Do I wish more appointments had been like this one? Absolutely. We’ve had more bad appointments than good ones, or at least that’s how it’s often seemed.

Afterwards, my daughter and I sat with hot drinks for nearly an hour, debriefing — checking that we hadn’t missed anything, that she felt heard, that we both understood what came next. Somewhere in that conversation, as we talked and reflected, I realised just how much these years of appointments have shaped both of us — not just her, but me too.

Driving home, I kept thinking about what made this different. Not just the doctor — though she was excellent — but what we'd learned to bring to the room. After twenty years, here's what I wish I'd known from the start:

1. This is a long-haul job — for them and for us.

We’ve been preparing, attending, engaging, researching, learning, defending, and adapting for as long as I can remember. There’s nothing “normal” about it, and yet it has become our normal.

It’s easy to forget how relentless this journey has been — how many years of forms, referrals, notes, late-night Googling, and quiet tears we’ve weathered. This isn’t a sprint; it’s a marathon with no fixed finish line. And somehow, we keep going.

So let’s take a moment to recognise that. This is a tough gig, and we’ve been doing it for years. That deserves acknowledgment — and compassion, not just for our children, but for ourselves.

2. As mothers, we really do know them better than anyone.

Even when they’re grown. We see things other people don’t. We hear things they never say aloud. We sense the small shifts, the subtle clues, the things that live between words. That intuition — that deep, almost cellular knowledge — is something no formal training can provide.

We might not have degrees or professional vocabulary, but we made these people. They are, quite literally often, our blood and bone. That counts for something. In fact, it counts for quite a lot.

Of course, it’s also important to stay open — to new ideas, professional expertise, and evolving science. But staying open doesn’t mean giving up your inner knowing. Take what works. Question what doesn’t. And remember that your insight doesn’t need to be a threat to the professionals in the room if you can communicate clearly and they are prepared to listen.

3. Advocacy is not the same as arguing.

But following on from the previous point, I’ve had to learn that difference the hard way.

When you’re ignored, dismissed, or treated as though you’re being “difficult,” it’s easy to slip into fear, defensiveness and frustration. But advocacy is not about confrontation — it’s about clarity. It’s about sharing information, expressing concern, and seeking solutions in a way that keeps communication open rather than shutting it down.

When we advocate, we teach our children how to do the same. We model how to ask questions, how to seek help, how to challenge authority and how to defend our positions when we know something isn’t right.  This is incredibly valuable given they may face challenges for a long time.

And even if your child isn’t able to advocate for themselves, doing it on their behalf still matters. It gives you peace of mind that you’re doing everything possible, and it shows professionals that yours, and your child’s voice matter.

4. Stay hopeful — even when progress feels slow.

We’ve had countless difficult appointments over the years. So many where we left feeling like nothing had changed.

This one didn’t solve everything either. Not all the problems were resolved, not all the answers found. But we left with something that mattered — a sense of movement. A feeling that things might, just might, start to shift again.

And that’s what hope looks like sometimes. Not perfection. Not certainty. Just a small flicker that tells you, keep going. If I hadn’t held onto that long-term belief — that “it will be okay,” even when it clearly wasn’t — we might have been in a very different place now. Hope isn’t naïve. It’s survival.

And maybe that’s the real lesson.

After years of waiting rooms, scans, assessments, tests, and operations the appointments that go well are like rare gifts. They don’t erase the exhaustion or the grief. But they do remind us that connection is possible — that there are professionals who listen, that progress can happen, that all those years of persistence have built something stronger in both of us.

Perhaps that’s what this journey is really about: learning to notice the moments that work. They don’t make the hard years vanish, but they make them bearable.

And maybe that’s also what love looks like — after everything — just keeping on showing up, together.

Are you affected by this topic? Have you had similar experiences? will you share them with me?

Would you be able to help me with my research by undertaking a survey and/or a phone conversation with me talking about your experiences?

Send me a message with your contact details and I’ll be in touch. And in the meantime remember to send this blog onto someone else who needs to understand they are not alone and to join our private facebook group for parents supporting children with chronic and invisible health challenges, Mamas In This Together https://www.facebook.com/groups/259165462952386