Blog: Disease Begins Before Diagnosis - Feb 2020

[Sly Saint]

When I was 29 years old, I got so sick that I had to stop working. I had this intermittent burning pain in my legs, I woke up each morning with sore and swollen joints, and I had a visible tremor. My body was so sluggish that I often needed help to get to the bathroom, and my brain was so foggy that I could barely read. I eventually quit my job as an editor before I was fired for making too many obvious mistakes. I rarely left the house.

Presented with all of these symptoms, my doctor ran a few standard tests and told me that everything looked fine. She didn’t see any reason to refer me to a specialist and she suggested an antidepressant if things didn’t improve.

I was devastated. I’d lost my income and my social life and I didn’t know where to turn for help. My husband of less than a year thought I was dying. My world was crumbling.

I bet you know someone with an undiagnosed chronic illness. Maybe they complain about their health all the time or they always seem to cancel plans. Maybe this has been happening for years and you’ve started to write them off as a hypochondriac, a drama queen. Maybe you believe that if something was seriously wrong, their doctor would have figured it out by now.

That’s what I believed. I believed that if you had a good doctor and a real illness, then diagnosis and recovery wouldn’t be far behind.

So why wasn’t that happening for me?

Most people I interview have spent years wondering if their symptoms are all in their heads. And even worse, they often feel like their loved ones believe that too. Like their loved ones are writing them off as weak or lazy. Without medical confirmation of their illness, a lot of people feel uncomfortable asking for accommodations or using mobility aids. And without a diagnosis, people can’t access benefits, disabled parking passes, or even patient support groups.

And it turns out that diagnosis isn’t as clear cut as I’d always believed. Not only does it take a long time, but people are often misdiagnosed along the way.

quite a long piece