If you missed out on the first part of this series about living with a chronic condition (lupus), catch up here. You can also see the next parts here and here. In this post, I’m going to focus on life before I got my diagnosis…
In my late teens and early twenties life seemed harder to me than it did to my friends. Living with pain and exhaustion, especially before I got a diagnosis for what was causing it, was miserable.
It wasn’t just the tiredness and pain of, well, being in pain. It was the fact that nobody could tell me what was going on. Nobody could give me any hope of getting better. And some of the time, people didn’t believe me.
The worst thing was the uncertainty. I was told countless times that it would be ‘very unusual’ for me to be experiencing the pain I was experiencing, and one consultant totally wrote me off as ‘an anxious young woman’. He was right that I was incredibly anxious, but that was because I was in agony and it felt like doctors wouldn’t listen to me. I was made to feel like a time-waster. I was terrified that I’d live the rest of my life with no way out and nobody believing me. I even began to doubt myself at times and wonder if I was somehow making all this happen just by thinking there was something wrong (those doubts would eventually be laid to rest by tests which showed there really was something wrong).
I will be forever grateful to the one consultant who calmly gave me my latest set of test results and then looked me right in the eye and said
“There’s nothing in these results to suggest why you’re in pain. But I can see you are in pain. I believe you. It’s not something I can fix in my specialism but I’m going to keep seeing you until we can find someone who can work this out and help you”.
The reassurance I got from that, from being taken seriously EVEN THOUGH he’d admitted he couldn’t treat me, was immense. He referred me for some more tests and passed me around departments a bit, and eventually thanks to him I got my diagnosis.
Getting those answers and that diagnosis was magical, even if I was given it in a letter rather than face-to-face (but that’s another story). I was euphoric. The doctors believed me! AND they had a name for it! This was real. There would be treatment. I could finally explain to people what it was that was causing me to be so tired and grumpy.
I’ll talk next time about what came next, but if I could say one thing to medical professionals meeting someone like me, it would be to listen and to remember that this is a real person, who is probably dreadfully scared.
They’ve waited weeks or months to get to see you and for them a huge amount rests on the few minutes they get with you. Please don’t waste that time by belittling their symptoms. Yes, there’s a chance that their symptoms are down to anxiety or stress, but if that’s so, get them help, don’t make things worse by dismissing them. And remember that, expert as you are, it might just be that something ‘very unusual’ or ‘very unlikely’ is actually happening to this patient, and they need your help.