• Actress Selma Blair revealed her first appearance since revealing she was diagnosed with multiple sclerosis in 2018. (FilmMagic / Getty Images )Source: FilmMagic / Getty Images
It’s not easy to be powerfully, unapologetically visible with when you’re chronically ill.
By
Chloe Sargeant

26 Feb 2019 - 8:52 AM  UPDATED 26 Feb 2019 - 9:47 AM

This year’s Academy Awards ceremony has received a positive response for its improvement in representation and diversity — a huge amount of women and People of Colour took home statues, the first Indigenous Mexican woman was nominated and the first African-American woman won for Costume Design, and Oscars were given for stories about menstruation, a queer singer who died of AIDS, the class and race disparity in Mexico, and an African-American cop who infiltrates the Ku Klux Klan.

However, it was yet another of these incredible moments that brought me to tears: Selma Blair arriving at the Vanity Fair Oscars party with a cane.

This was the actor’s first public appearance since she was diagnosed with Multiple Sclerosis last year — and it has made an enormous impact on chronically ill people.

 

I have fibromyalgia — a surprisingly common, yet little-understood and incurable chronic illness that affects my nervous system. Everyone experiences fibro differently, but mine constantly sends signals to my brain saying I’m in pain, even though I’m physically not.

This means I feel pain around my body every single second of the day, which is often accompanied with extreme fatigue, nausea, a visual and mental haziness referred to as ‘fibro fog’, and a host of other bizarre, seemingly random symptoms that make my life hellish, to put it lightly. I have rare days where I feel almost normal, but then there are days when I can’t walk properly, and my body pulsates with terrifying pain like I’ve been dragged behind a truck for hours, while simultaneously having the flu. Most days are somewhere between those two ends of the spectrum, and it’s a complete gamble.

At age 27, nearly a decade after I developed symptoms, I can generally manage my pain, with a complex combination of drugs, exercise and psychology techniques. But my illness is still highly detrimental to my life and day-to-day happiness; I have to work very hard in order to minimise my condition, and even then, I still have debilitating flare-ups.

Doctors have told me that fibro gets worse with age. Some who live with fibro and similar illnesses end up not being able to walk, and need mobility aids, like Selma’s cane. This is a scary thing to hear at a young age, that your sucky-but-still-somewhat-functional body might one day completely fail you.

So, seeing Selma opening an Oscars party with a cane was an emotional moment for people like me. Watching footage of her speaking at the event about how physically difficult it was to be there, made me cry. Selma looked brave and beautiful. She was commanding a room to talk about her chronic illness and how exhausted she was! She was on a red carpet at a damn Vanity Fair party with her cane, and she is living! What a queen! A glowing spoonie* icon!

The actor speaks out about her MS in ways I’ve never seen a celebrity do before. She posted an Instagram photo of her mobility aid and how much she loves it (it’s personalised with her monogram), and has repeatedly spoken out on social media about her symptoms, her immobility, her hopefulness for the future, and her frustrations with being ill. That last one is my personal favourite — it really does help hearing other people get p***ed off about their situation, because I certainly do.

Invisible illnesses like MS and fibromyalgia can leave us feeling pretty isolated: we’re constantly misunderstood, delegitimised and underrepresented. People can’t physically see our illnesses, and so our existence is doubted, ignored, invalidated.

Blair’s red carpet appearance reminded me just how much representation of our experiences and existence really does mean. My tears were reciprocated by every chronically ill friend I have, and the appreciation for Selma’s defiant public appearance with her cane was spoken about voraciously in every chronic illness social media group that I’m a member of:

 

 

 

 

Selma Blair in her first appearance since her MS diagnosis. Using a cane!

Posted by Disabled Feminism on Sunday, 24 February 2019

Representation is important, and I am thankful to Selma for doing what she did. It’s not easy to be powerfully, unapologetically visible with when you’re chronically ill (and it’s damn near impossible to be glamorous while you do it) but I really appreciate that she was.

Solidarity Selma, my fierce spoonie queen.

*spoonie - a common term for people with chronic illness and chronic pain, derived from The Spoon Theory.

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