Obscure illness gets star treatment

Thanks to Selena Gomez’s recent revelation that she suffers from Lupus, the world knows a lot more about an illness that once stood like a wallflower at the high school dance of diseases

By Shelley Page

The world’s teenage girls just got a crash course on lupus.

Selena Gomez has 34 million Twitter followers, 47 million Instagram followers and 58 million Facebook followers.

And she has lupus.

Suddenly, the obscure has become front-page tabloid fodder.

I feel horrible for her, but oddly happy for those of us who suffer from the fatigue-inducing, organ-destroying autoimmune disease.

October is one of those months when there are walks and talks for many major diseases. October is Autism Awareness Month. Ditto for Brain Tumor Awareness, Breast Cancer Awareness, Eye Health, Learning Disabilities, Psoriasis Awareness, SIDS Awareness.

And Lupus Awareness Month, at least in Canada.

It’s an obscure illness that doesn’t attract big banks as sponsors or celebrities as spokespeople.

I’ve always found it challenging to raise money to help find a cure.

It’s not that I’m against raising funds, as long as it’s for someone else’s disease. I’ve been route marshal for breast cancer’s ‘Run For The Cure,’ walked annually in the ovarian cancer walk and attended breakfasts to benefit mentally ill children. I’ve even answered phones in telethons for the University of Ottawa Heart Institute and the Easter Seals Society. How can you say no to kids who need wheelchairs?

But what I have done lately for lupus? I’ve successfully dodged manning the Loonies for Lupus booth at the local shopping mall. And beyond asking friends to pay a pittance to attend a Chinese banquet to raise funds to hire a hospital research assistant, I refuse to pick up a receipt book and make the rounds.

How can I go door-to-door visiting my neighbours to play, “My illness is worse than your other neighbour’s illness”? I feel defeated before I’ve begun.

I was raised in a family where we don’t talk easily about personal health issues and we certainly don’t beg. Most people don’t even know what it is. With people like me on the team, how can lupus sufferers ever find a cure or better treatment?

Perhaps we need a catchy slogan or a power-verb that resonates. Linger? Endure? Cope?

Other ill folk “fight” battles and “conquer” their diseases. What words are there for something that just goes on and on and on? What do we say at our neighbour’s door?

“Hey, it’s me again. I’m still sick. Same as last year, and the year before that. Ditto for the last decade.”

Beyond a slogan or a sponsor, we need a spokeswoman; someone who can make a pitch to potential funders and researchers.

Enter Selena Gomez.

While promoting her new album, Revival, the Disney pop star confessed to several interviewers that she has been suffering from lupus for a few years. Until that disclosure, the 23-year-old had endured rumours of drug use, rehab, and even fat shaming, which lupus sufferers on high-dose prednisone often endure, except on a global scale.

In 2014, Gomez cancelled the Australian and Asian leg of a concert tour, saying that she needed to spend some time with herself. Earlier this year, Gomez checked herself into an Arizona rehab facility, setting off a string of tabloid rumors about drug use. It turns out the ‘drug’ was chemotherapy, a common treatment for lupus.

Gomez recently told Billboard magazine: “I was diagnosed with lupus, and I’ve been through chemotherapy. That’s what my break was really about. I could’ve had a stroke. I wanted so badly to say, ‘You guys have no idea. I’m in chemotherapy. You’re assholes.’ I locked myself away until I was confident and comfortable again.”

And now she’s making the rounds, telling truths and tweeting about illness.

Add me to the lists of her followers. I now routinely search her name on social media looking for clues of how she’s feeling and faring under the spotlight. Any future flare — and I hope they are few — will be documented and dissected.

I feel horrible for her, having to cope with chronic illness in the spotlight. The fat-shamers who have no idea what corticosteroids (prednisone) do to your appearance have been relentless. But I’m also grateful for her strength, and that she decided to share her diagnosis.

Whether we’re 50 or 23, it gives a boost to the rest of us, who mostly suffer in silence.