I’m Grateful for Celebrities Who Shed Light on Autoimmune Disease

A columnist with NMO is inspired by those facing similar health challenges

Jennifer van Amerom avatar

by Jennifer van Amerom |

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As I watched actress Selma Blair try to formulate a sentence in her 2021 documentary, “Introducing, Selma Blair,” I couldn’t stop the tears from running down my face. I didn’t mean to watch it alone, sitting in the dark, but I’m glad I did. My heart ached for Blair, as I know that feeling of helplessness, struggle, and frustration all too well. The filmmakers had captured her most vulnerable moments in life with multiple sclerosis (MS), an autoimmune disease similar to neuromyelitis optica (NMO) — the condition I live with.

Many celebrities have shared their journey with chronic illness, and for that I’m grateful. Like Blair, Christina Applegate has MS. Zoe Saldana and Gigi Hadid have Hashimoto’s disease. Selena Gomez has lupus, Venus Williams has Sjögren’s syndrome, Missy Elliott has Graves’ disease, and Lady Gaga has fibromyalgia.

Feeling a little less alone

It was difficult to watch Blair struggle in her documentary, but for a moment, I didn’t feel so alone, so different from everyone else.

I felt the same way watching the 2022 documentary “Selena Gomez: My Mind & Me,” which depicts her struggles with lupus and mental health. At one point, her neurologist explains that it’s time for her to start the monoclonal antibody medication Rituxan (rituximab). Gomez is filmed being hooked up to an IV for an infusion. In that moment, she’s just another human being, without the hair and makeup team, who’s donning her favorite sweats and trying to settle into the treatment chair. I’ve been that person, too, fidgeting to get comfortable and frustrated by how long I needed to sit still during treatment.

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In 2019, Blair made headlines by walking the red carpet at the Vanity Fair Oscars Party with a fashionable cane. Since then, she’s done photo shoots that somehow make her cane look cool. She was even a contestant on “Dancing With the Stars” this fall.

I’ll admit, using walking aids still embarrasses me. My one and only cane, which I occasionally need, is tucked away in the depths of my closet, hidden like a dirty secret. I don’t want it to remind me of my struggle with NMO. But maybe the next time I need it, I won’t feel so bad. I’ll put on a high-fashion look and pose confidently before attempting to go somewhere.

A life (still) worth living

When we’re diagnosed with an autoimmune disease like NMO, we tend to have many questions. How will we contribute to society? In what capacity?

Applegate was diagnosed with MS in the summer of 2021, just as filming began for the third and final season of her show “Dead to Me.” Production was halted for five months as she began treatment, and while cast and crew say it would’ve been OK to quit filming entirely, Applegate insisted on finishing out the season.

Still, in a recent interview with The New York Times, Applegate said that “finishing the series was the hardest thing that she has ever done.” One of the sound technicians even held her up for several scenes, supporting her weak legs just out of the camera’s view.

No one would (or should) have been disappointed had she backed out of filming, but her persistence inspires me to fight through my tough days. If Applegate can continue to work, so can I.

Facing my hard truth

In Lady Gaga’s 2017 documentary, “Gaga: Five Foot Two,” there’s a moment when her fibromyalgia flares up, leaving her in tears. It’s an incredibly raw moment, again, captured on video.

As I watched her struggle, I was overcome with a feeling of fear. While I’ve experienced several similar moments with NMO, witnessing it from the outside was somehow even scarier.

Watching celebrities like Gaga, Blair, and Gomez struggle with pain is an out-of-body experience. Like them, I don’t want to be sick, either.

To exist in my everyday life, I need as much distance from NMO as possible, which is why I’ll only ever be able to watch their documentaries once. I’ve had to come to terms with my own illness, so it’s difficult to be reminded of those feelings — on screen or in my mirror. That said, I know these celebrities are owning their truth, and in doing so, they inspire people like me to do the same.


Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).

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