Episode #67: Jessie Ace
Jessie Ace is host of the DISabled to ENabled podcast, a podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary - she wants to change this for other young people and support them through the process by being a patient advocate.
For the first few months after she was diagnosed with multiple sclerosis (MS), Jessie Ace felt like her life was over. She had been sent home from the hospital with a diagnosis, but she didn’t have answers to any of her questions about how to live with her condition. In addition, the first treatment she tried was incredibly painful and stressful. But, as she learned how to advocate for herself as a patient and reframe her mindset, Jessie’s experience changed. On today’s episode, Jessie and I talk about what it was like to be diagnosed at age 22 (on her last day of university, no less!), and how she felt when she was suddenly labeled as having a disability. We also chat about her work as an illustrator, writer, and podcast host, and why she champions the term “enabled” when talking about people with disabilities, chronic conditions, and invisible illnesses.
“There are so many people with invisible illnesses and chronic illnesses that need the support of the blue badge, the blue permit, who aren’t actually in a wheelchair...so why is there a picture of a wheelchair?”
Here are some of the things Jessie and I chatted about:
Why, when she woke up and one side of her body was paralyzed, she chalked it up to stress
Spending three days in the hospital and getting tests done she’d only seen on Grey’s Anatomy
Learning her diagnosis, and why she felt at a loss for answers after talking with her neurologist
The injectable treatment she tried first, and the pain that came with the 3x weekly injections
Transitioning to a capsule treatment, and why she didn’t mind taking a daily medication
Discovering The Miracle Morning, and how it helps her manage her health and mindset
The symptoms she deals with consistently, and why it’s a challenge to rattle them all off
The experience of studying to be an illustrator, and then not being able to hold a pencil
After deciding that she needed to rethink her career, why she chose to go into fashion
Why she started writing for MS charities and focused on content relevant to young people
Using her disabled permit and being judged for it because she didn’t look “sick enough”
Why she feels strongly against using a wheelchair icon to represent all people with disabilities
Her podcast, DISabled to ENabled, and how she felt when she was first labeled “disabled”
In her experience, the power that a positive mindset plays when navigating an illness
How she uses analogies to explain her invisible symptoms to friends and family members
Valuable MS resources, including:
“Why can’t we be called enabled rather than disabled?”
Listen Here: iTunes / Spotify / Stitcher / Google Play / Overcast
Follow Jessie: Website / Instagram / Facebook / Podcast / 5-Day Stress Challenge
(Plus, check out my interview with Jessie on the DISabled to ENabled podcast: Episode #31)
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