Celine Dion announced this week that she’s been diagnosed with Stiff Person Syndrome. This was not a major news story that I ever thought I’d wake up to. After all, I’ve spent years living in a world where no one knew what the heck I was talking about when I mentioned my illness, even most doctors.
At my slew of medical appointments, it is rare that a new doctor or nurse I speak to has heard of SPS. I usually get a look of confusion and the response of “Hmm I guess I’ll look it up later”, or they repeat back to me “Stiff person Syndrome?”, as if I just spoke alien to them.
But living in Montreal, where here in Quebec she’s our hometown hero who we love, that response is already turning into, “Oh, like Celine Dion!”
My mom, my dad, my grandmother, and I were all flooded with texts sending us links to articles or asking if we’d seen the news.
Watching the video Celine posted was heart-wrenching, because I could see the pain in her face and hear it in her voice. She must have been going through hell for a long time, and it brought me right back to the early days of my disease before my diagnosis was figured out. And the world just felt so unfair when I heard that her spasms were affecting her diaphragm, and therefore her voice.
This disease is torturous and unrelenting and painful to go through to begin with, and for it to affect what she loves most just seems so unfair.
A few years ago I wrote this quote about living with Stiff Person Syndrome; “When you have a rare disease you face two challenges. One being the illness itself, and the other, living in a world where so few people understand what you’re up against.” Thanks to Celine’s openness about her diagnosis, I think a lot of us will feel a little less alone after this week.
If I could give one message to Celine, apart from a big hug, I would tell her that she’s a fighter. I would tell her that I’m sending her all the love and good vibes and prayers in the world for her team to find the right treatments so she can continue doing what she loves for a long time. I would tell her that she’s not alone, and all of us in the small but mighty SPS community are standing by her and lifting her up. I would tell her how she’s already changed our lives by the awareness she’s brought to this disease. I would tell her that she has the biggest cheering section, and we’ll all be fighting right alongside her. You’ve got this Celine, and we’ve got you!
Courage, Céline 🤍
It is a little known condition. But including you and Celine Dion, I now know of three people with standing stills disease (standing stills is what it is called in the US). It is a tough DX. Blessings.
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