In my late teens and early 20s life seemed harder to me than it did to my friends. It took 10 years (and many, many doctors) before I was diagnosed with systemic lupus erythematosus (SLE or “lupus”) in my late 20s. I was in pain every single day, agony some days, and felt constantly exhausted. Living with pain and exhaustion, especially before I got a diagnosis for what was causing it, was miserable. I’d imagine this is something that is common to people with all sorts of conditions (now diagnosed or still undiagnosed) and hope that sharing how I felt can make others realize they’re not alone.
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 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 speciality 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.
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 their symptoms the result of 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.
Follow this journey on Megan’s blog.
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Thinkstock photo via Wavebreakmedia.
Megan is a tea-drinking writer, lupus patient and winner (mostly) of the daily battle against some pretty independently-minded hair. She works as Megan Rose Freelance, a Hertfordshire-based copywriter
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