Diagnosed Before Her 13th Birthday. Now She's a Social Worker, Author, Mom
Episode 84 of Invisible Strength
Jodie Nimigon-Young was diagnosed with lupus the week before her 13th birthday — after almost a decade of symptoms nobody could name. She was told she wouldn’t finish high school, wouldn’t complete post-secondary, and wouldn’t have kids.
She’s now a social worker in healthcare, a mom of two, and co-author of Fabulupus: How to be young, successful and fabulous (with lupus) — written with Jessica Kundapur, and for a long time the only book of its kind for young people with chronic illness.
In this conversation with Karin Wagner and Chris Burton, @
Jodie gets into:
Why she modifies the timeline instead of dropping the goal
How to request workplace accommodations WITHOUT disclosing your diagnosis — and the safety exception nobody talks about
Why “should” is the most damaging word in her vocabulary
The two hardest stretches of her life (neither one was a flare)
How she tells a new partner about lupus — and why a bad reaction is useful information
What invisible strength actually means when you’re not the “rah-rah” type
📘 GET THE BOOK
Fabulupus by Jodie Nimigon-Young & Jessica Kundapur: https://amzn.to/4wTViHJ
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🔗 FOLLOW JODIE
Instagram: @fabulupus.book
CHAPTERS
00:00 Intro
00:44 Who Jodie is: social worker, author, mom
02:05 The mindset behind “young, successful and fabulous”
04:16 Symptoms at 4, diagnosis at 12
06:27 The hardest years: ages 13 to 16
08:47 Sick Kids, and seeing what happens without support
10:01 Why she never hid her diagnosis
13:30 Telling your employer — what you do and don’t owe them
17:32 Rock bottom: fertility treatment and COVID isolation
21:30 Mindfulness, movement, and doing what the day allows
23:29 Her relationship with her body over 29 years
28:11 “Should is a bad word”
29:29 Managing projects with an unpredictable body
31:32 The gifts inside the journey
35:48 “Be water”
36:26 Naming her privilege
38:11 Dating and disclosure
43:06 If you were diagnosed last week
44:20 What invisible strength means to Jodie
47:09 Where to find Jodie and the book
🌐 Resources, coaching & support to invigorate your chronic illness journey: https://www.invigorateyourjourney.com
⚠️ Disclaimer: This content is for education and shared experiences only and is not medical advice. Always consult your healthcare team before making changes.