Still Waiting

This week feels a bit like déjà vu. I’m still waiting, still in pain and still checking my phone for updates that never seem to come. I thought I’d have something new to share by now, even a small step forward, but nothing has shifted. If I’m honest, I wasn’t sure whether to write anything at all, because it feels strange sending an update when there isn’t much to update. But this is the reality for so many of us. The standstill is part of the story too.

Living with a skin condition that changes day by day is tiring at the best of times, but it hits differently when you’re stuck in a queue that doesn’t seem to move. I’m trying to be patient, trying not to jump to worst case scenarios, but it’s hard when my keloids keep growing and the pain hasn’t eased for months. It’s also hard when you’re told to expect a certain level of aftercare, only to realise it isn’t happening. I know a lot of you will understand that mix of worry and disappointment.

The most recent appointment I did have was for new pressure splints. The team there were kind, and they listened. They could see I was drained before I even opened my mouth. I explained everything that’s happened over the last few months, and they were honest about how confused they were as well. Hearing a doctor say they’re shocked by the lack of follow up doesn’t fix anything, but it did make me feel a bit less like I’m imagining the whole thing.

When I first agreed to the treatment plan a couple years ago, I was told the procedures would be spaced closely together to prevent new growth. That was one of the reasons I went ahead with it. Now it feels like the plan has fallen apart and I’m the only one trying to hold the pieces together. The part that stings is how easily this could have been avoided if things had been kept on track.

So here I am again, weighing up my options. Do I give the system one more chance to sort itself out, or do I start looking elsewhere? Even the idea of another round of consultations sounds draining, but at some point I need progress, not promises.

Even though this isn’t the update I wanted to write, I’m still here, still trying, still refusing to let this condition decide everything. I can’t give up on myself, even on the days when it feels like the system already has. If you’re in a similar place, I hope you hold on too. We don’t have to move fast, but we do have to keep moving.

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