Life in the waiting room (even when you’re not in one)

Right now, I’m stuck in a kind of limbo. I need treatment where I’ll be an overnight patient, but I don’t know when I’ll actually be seen. My condition gets worse daily, but the appointment letter still hasn’t arrived. Like the rapture videos I’ve seen all over TikTok for the past 2 weeks, it feels like I’m living in that strange space of “not knowing the day or the hour.”

So what do I do while I wait? I make phone calls. I send emails. I remind departments that I’m still here. My mum always told me to keep on top of them, and a doctor once backed that up, saying if you don’t speak up you could easily end up at the bottom of the list.

It’s a bit exhausting, but that’s the system. The NHS is stretched. Getting a GP appointment can feel like winning a raffle. Funding is tight. Some conditions are treated as urgent, others less so, and it doesn’t always feel fair.

Keeping life going

I’ve learnt I can’t just sit around getting dragged down by things I can’t control. Yes, I’m waiting. But I still try to focus on my health, my wellbeing, and my life outside hospitals. If I let myself completely pause until I “get this sorted”, I’d be waiting forever.

I used to think, “once I fix this, then I’ll take the leap and do X.” The truth is, time doesn’t wait. This newsletter itself is proof. I could have delayed it until my health was better or my energy was higher, but I’d still be in the same place. The first step is always the hardest, but it’s also the one that gets you moving so just do it. (And no, this isn’t a Nike ad. Yet.)

Trying things, even when they’re small

While waiting, I also keep looking at ways to manage my keloids at home. This isn’t medical advice, just me being honest about what I’ve tried. Steroid creams, silicone gels, herbal teas that claim to reduce inflammation. I can’t say any of these have worked consistently for me, but I also haven’t been consistent with using them. I’ve seen others online say they’ve had good results, but so far I haven’t noticed the same.

Maybe it’s about persistence. Or maybe it’s about recognising that not everything will work the same for everyone.

Putting energy elsewhere

Another thing that helps is pouring energy into other projects. I’ve been working on something to collect and share information on specialist skin treatments. Right now, it feels like only a handful of places actually treat conditions like mine, and we’re all waiting in the same queues, competing for attention. If this project can raise awareness of our needs and widen access to treatment, then maybe it’s worth the effort.

Outside of that, I try to stay connected. I make time for friends, family, and small occasions. I remind myself that life isn’t just about hospital appointments or the lack of them.

Over to you

If you’ve had to wait months (or even years) for treatment, how do you cope? Do you chase the hospital, or do you just sit tight? Have you found small things that help you keep going while you wait?

I’d love to hear your stories, not just for me but for everyone who’s reading this and nodding along. You can contact me on social media @ttlnewsletter and I swear I’ll be putting up some content on those pages soon.

Closing thought

Waiting can feel like life on pause, but it doesn’t have to mean life stops. We don’t get to pick the dates of our appointments or how quickly the system moves, but we can decide what we do with the time in between. For me, that means staying as healthy as I can, keeping projects alive, and not letting the weight of “someday” stop me from living today.

Help us keep sharing real stories, you never know who your advice may help.