Why it matters when celebrities go public about their lupus

It really sucks that Selena Gomez has lupus. I know how hard a lupus diagnosis can be because not quite two years ago I received the diagnosis myself, at 26 years old. When Selena opened up about her illness not long after I was coming to terms with it myself, I recognized that having such a public face for my disease could be a good thing.

Oftentimes people really don’t pay attention to a disease, especially a confusing, often invisible one like lupus, unless there’s a big name attached to it. But I never could have imagined how big an impact she would have on me, my province, and a little charity with a big heart that I’m proud to be a part of.

At this point we all know that Selena Gomez has taken time off to focus on her health as she experiences anxiety, depression and panic attacks that stem from her lupus diagnosis.

At the end of the summer when she announced the cancellation of the remainder of her tour, her next stop was my hometown of St. John’s, Newfoundland, Canada.

Immediately following her announcement, social media in my area blew up with posts about Gomez and lupus, a lot of them very negative. There were comments like “she should just suck it up and get on with the show,” and people wondering why our radio stations hadn’t already blacklisted her music from radio play. There were hundreds of comments about how Selena had let our province down, that it’s not fair for us to have been looking forward to a concert all summer only to be disappointed. It was apparent that a lot of people really had no idea the struggle that someone with lupus has to face on a daily basis.

"Because of one cancelled concert, the music and arts community in my area have banded together to spread lupus awareness, raise thousands of dollars towards research and education initiatives, and to help erase the stigma of mental illness."

Seeing those comments was very upsetting to me, because I know what it’s like to try to function with such an unpredictable disease. When you have lupus, every single morning when you wake up you have no idea how the disease will affect you that day. You could have an amazing, symptom-free day, or your immune system may randomly start attacking a whole new part of your body that you weren’t expecting. 

In the less than two years since I was officially diagnosed with lupus, I honestly couldn’t count how many times I’ve ended up in the emergency room or at my doctor’s office – sick, in pain and scared.

I have had panic attacks from the steroids they give me when the disease gets really bad. I have had a two-month period where a lupus flare-up manifested itself in the form of going into anaphylactic shock from a nut allergy I didn’t have just the week before. I ended up in the hospital ten times in two months and then the allergy vanished when my flare ended.

I’ve had muscle weakness so extreme that I couldn’t get up off my couch or get up the stairs to my bedroom. I’ve had half of my face become paralyzed. I’ve had trouble chewing and swallowing food.

I’ve had blinding migraines. I’ve had horrible joint and muscle pain. I’ve had a frozen shoulder. I’ve had countless infections just one after the other. And I have what most would consider a milder version of lupus. I haven’t had to undergo chemotherapy for my disease. Selena Gomez has. Of course having to deal with something like that can cause depression and anxiety. I would be shocked if anyone could come out of that without mental health issues.