Living With Multiple Sclerosis In A Post-Selma Blair World
Actor Selma Blair was diagnosed with MS in August 2018 and her emotional return to the red carpet at this year's Vanity Fair Oscar's party with the support of a walking stick made headlines around the world.
She revealed to U.S media that she began experiencing "flare-ups" for years and that she cried "tears of relief" when she was finally diagnosed.
"They were tears of knowing I now had to give in to a body that had loss of control, and there was some relief in that."
So, what impact will the Hollywood star's diagnosis have on the disability's profile?
Mike Welsh, a digital leader and Astrid Edwards, a university teacher are two of about 25,600 Aussies living with MS -- both are also national advocates for MS Australia.
Mike, 43, was diagnosed 13 years ago while RMIT University teacher Astrid, 38, found out she had the disease in 2013.
At first, Astrid didn't give Blair much thought -- but then she watched Blair's interview and burst into tears.
"The red carpet is not where you see anyone who is different -- to see [Selma] share her experience which includes trouble walking and speaking was meaningful," she told 10 daily.
Astrid hopes Blair's public journey -- with its inevitable ups and downs -- will help destigmatise and demystify what is a very complex illness that is often misunderstood.
For Mike, Blair's very public diagnosis hasn't had much of an impact on him but he can see the potential to create more awareness -- people might say, "Oh, that's that thing than Selma Blair has?"
"Hopefully, her sharing her diagnosis will make it less scary for other people [with MS] as they go through that and give them a reference point," he said.
At the time of her interview, Blair's symptoms were very visible -- she had spasmodic dysphonia which affected her speech and used a cane to walk.
Howver she was quick to point out that the disease is "different for everyone like a fingerprint" and that things could change in a short period of time.
"This is what my particular case looks like right now and it can be very different in a year -- for the better," she said.
MS -- the facts And The Future
MS is a lifelong, unpredictable, chronic disease that attacks the central nervous system -- the brain, spinal cord and optic nerves -- and currently has no cure.
It's often called a "snowflake disease" as symptoms are hard to predict and vary widely from person to person -- and day to day.
So, it's often not possible to identify someone living with MS just by looking at them.
"You would not know I have it to look at me, and you probably think I’m being rude when I’m yawning during our conversation, but it’s just sitting there, draining my energy and making almost every moment a battle," Mike explained.
He told 10 daily that he feels "quite lucky" as his MS is fairly mild and he doesn't take any drugs as long as he avoids pushing himself too far.
Astrid's experience with MS can change from day to day and many of her symptoms are "invisible."
Her condition may one day worsen however her doctors are positive -- "They told me that I may need a cane but that's probably it," she said.
Another challenge with MS is the time it takes to get a diagnosis. Blair revealed that she lived undiagnosed for seven years and was continually dismissed by doctors -- her story is not unique.
Astrid's journey from illness to diagnosis several weeks-- which is "relatively good" -- but it wasn't easy.
After a dramatic first episode six years ago which involved a loss of feeling from her abdomen down to her feet, Astrid had to fight for it to be investigated.
"I was told by GPs that I was working too hard or that I was depressed,' she said.
In the end, it was a "relief" to be diagnosed because she now knew what she was dealing with.
Mike admits he had to "push quite hard" to get a referral for an MRI after briefly losing half his vision -- and it was someone close to home who suggested it might be MS.
"My mum has MS and ... while going through the various tests to determine what happened to my vision, it was her who pushed me to ask about MS," he said.
Lo and behold his mum was spot on and the scan showed MS lesions in his brain.
Mike hopes that researchers find simpler and cheaper methods of diagnosis so that people don't have to fight to find out if they have the disease. One day there may even be a cure.
Astrid wants people to know that MS has changed over the years -- nowadays the long term outcomes for people with MS are far better than they were.
"It's not as scary as it used to be," she said.
As for Blair, she hopes to "help people to be more empathetic" to MS and aims to design a range of adaptive clothing for people with disabilities -- she's also determined to keep working as an actor.
World MS Day is on Thursday, May 30, 2019.
Feature image: Getty.