It’s not all in your head

Sandra's story was included in Canada’s Rare Voices 2023.

_“I was in my late 20s when I started to have difficulty speaking. That’s a really big problem when you’re a radio broadcaster. I could barely get through a 90-second newscast without my speech starting to slur. It sounded like I was drunk on the air. It caused me constant anxiety, and so I became a master of concealment. Man, nobody wrote a tighter newscast than me, because I wanted to blitz through it and bail. ‘Traffic and weather next.’

I kept going to doctors, but every one of them was convinced it was in my head. My family doctor got so sick of seeing me in his waiting room. I could see the look on his face like, ‘Oh God, it’s her again.’ I was inevitably referred to a psychiatrist who diagnosed me with a psychosomatic condition, and that was that.

I lived like that for seven years. After my first child was born, things actually got worse. My eye started to droop. I could barely lift my arms over my head. I had trouble just holding my baby. And yet, the doctors still said, ‘It’s all in your head, kid.’

“I had worked so hard to get where I was in my career, and I was terrified that this was how I was going to go out.”

There isn’t anything more frustrating and insulting than knowing without a doubt that there’s something physically wrong with you and then having people tell you it’s your imagination. Unfortunately, mine is hardly a unique story in that regard.

Eventually, I moved from Toronto to Ottawa for a fresh start as a host on the morning show at a new station, and that’s when the cracks in all my expert concealment finally began to show. People were noticing. I got sent home in the middle of a show because I was too ‘exhausted.’ I had worked so hard to get where I was in my career, and I was terrified that this was how I was going to go out.

What saved me in the end was a sinus infection that exacerbated my issues to the point that my throat started to close. I drove myself to the emergency room in the middle of the night and, when I got there, I couldn’t even speak to tell them my symptoms. I had to write them down. I waited all night in the ER. 

In the morning, a neurologist came in to see me. He gave me an injection and said, ‘If you have what I think you have, then in one minute you’re going to be speaking perfectly.’

In one minute, I was speaking perfectly. 

‘Oh darling,’ he told me. ‘You have myasthenia gravis.’

I cried like I had never cried before. Seven years of emotion and frustration came out all at once. The neurologist looked at me as though I had lost my mind, but that was just it. I hadn’t. I had always told them I wasn’t making it up.

My treatment plan, of course, took some figuring out. Eventually we found the right treatment combination, paired with exercise, that works for me completely. I’ve been stable for 15 years now. These days, I check in with the neurologist once a year and it’s so quick. Nothing to report. Still happy. Still healthy. Still on the air. Or out on my motorcycle. But those years of not knowing... that was a nightmare I wouldn’t wish on anyone.

So, when people ask what I would do differently, the main thing I say is that I wish I had advocated for myself better. You have to know your own body. If something is going on and you know that it’s not in your head, don’t let anyone tell you it is. When I get upset about my illness now, it’s entirely about how much more I could have done with my life if someone had just said the words ‘myasthenia gravis’ to me seven years earlier.”

‍This initiative was supported by Alexion AstraZeneca Rare Disease. The content was developed by Patient Voice, and the supporter did not influence the final article or editorial themes.