For years I was told it was nothing. A pulled muscle. Stress. Sleep on a firmer mattress. Take two of these and come back if it gets worse.
It did get worse. It turned out I'd been walking around on fractured vertebrae, and nobody had found them. Me included.
What being undiagnosed actually does to you
The pain is only half of it. The other half is not being believed, and after a while, not believing yourself.
You start to wonder if you're making it up. You stop mentioning it, because every time you do, you watch someone decide you're exaggerating. You go to work, you smile, you say you're fine. And you carry it somewhere nobody can see.
For me, that somewhere was gambling, drinking and shutting down. They weren't the problem. They were what I did with a pain I'd been told wasn't real.
The waiting room club
If you're in it, you know the routine. Scans. Bloods. "Everything's come back normal." A leaflet that describes somebody else's symptoms. Another referral. Another wait.
You become a walking diagnosis long before you ever get one.
What helped, eventually
- Writing it down. Dates, what hurt, what I'd done that day. When I finally sat in front of the right person, I had more than "it hurts".
- Saying it out loud to one person. Not everyone. One. It made it lighter.
- Humour. Not to hide it. To survive the waiting. Some days a daft joke about it was the only thing that got me out the door.
That last one is why I make the shirts. Walking Diagnosis and Pain Forecast are the jokes I told myself on the bad days. If you're in the club, you'll get them.
If you're still waiting
You're not making it up. Keep notes, keep pushing, and keep one person close who believes you. It took me years to get an answer. I'd rather it took you less.
Jason