From 10:00 in the morning until 21:30 at night—that’s how long it took to get today’s “issue” sorted out.

The problem? My ECG is always abnormal. My troponin levels are always elevated. For me, this is baseline—caused by kidney failure. But every time I arrive in an emergency department, those readings set off alarm bells. No amount of saying “this is normal for me” convinces anyone.

Today, they finally compared my ECG with a previous one. Surprise: it was exactly the same. Argh. Now we’ve photographed the chart, so next time we can show proof instead of trying to explain.

This isn’t just about me. It’s about how people with chronic conditions live in a cycle of repeated tests, repeated panic, repeated delays. Our “abnormal” is our normal. Yet the system isn’t built to recognise that.

📣 Advocacy matters here:

• Patients with long‑term conditions need their baselines respected.
• Emergency departments need better ways to flag “known abnormal” results.
• Time and resources could be saved if lived experience was trusted alongside the machines.

Because sometimes the hardest part isn’t the illness—it’s persuading the system to see you instead of just the numbers.