13 Spoonie Role Models You Should Celebrate This Women’s Month
Are you looking for a woman who is facing similar chronic health challenges? Maybe you’ve just been diagnosed and you’re clueless on what to do next. Perhaps you’ve been struggling for years and hoping you find another spoonie who has the drive and resilience despite the devastating illness and pain.
Someone who can inspire you that no matter how ill you are, your life is still worth living and fighting for. Someone who shows you how to live with grit and grace. Someone who motivates you to share your story and be unstoppable.
Someone who simply... gets it.
I asked our spoonie communities to share who this woman is in their lives. Check out these 13 spoonie role models you’ll want to follow and meet someday.
Inspiring Women with Chronic Illness
1. Jessica Taylor-Bearman
"My spoonie role model is Jessica Taylor-Bearman, author of 'A Girl Behind Dark Glasses' and ME awareness activist.
Her courage, kindness and determination to enjoy life despite the challenges of living with severe ME, inspires me to embrace life and share my ME story. Along with raising awareness, she also set up a charity called 'Share a star' which helps seriously ill children by bringing some joy back into their lives through a variety of projects they run. Jessica has achieved so much in her young life, and she has taught me that no matter how ill I am, my life can still have meaning, and still be worth living." ~ Jo Moss
Jessica's courage, kindness and determination to enjoy life despite the challenges of living with severe ME. @jayletay
2. Amy from @the_migraine_life
"My spoonie role model is Amy from @the_migraine_life on Instagram as she provides so much information and help to people with chronic migraine, and has a great sense of humour as well. She doesn't give up in trying to find new treatments to help treat her migraines, and is so encouraging to others." ~ Claire G
3. Anita Roddam
"My role model is Anita Roddam. She's been connecting warriors and fighting to be heard since before social media was around.
Despite being 100% bedridden with severe illness for decades, she continues to raise awareness of M.E. and organizes advocacy events from her bed. It takes so much out of her, but she keeps at it for the millions missing.
Her drive and resilience, despite devastating illness, pain and disability over the years, is amazing to me and motivates me to continue sharing, not only my own story, but those of other warriors too and to use my limited energy and strength to keep on raising awareness." ~ Char Schoeman
4. Rachel Tait's Mum
"My spoonie role model is my Mum. She was diagnosed with Rheumatoid Disease several years before my own symptoms began. Her whole life changed in a very short period, and I watched her go through things I just couldn't imagine surviving. She faced it all with grace and grit, from the battle to be diagnosed to losing her ability to work, run and cycle.
I watched her and my Dad go through grief and turmoil for the life they had once imagined having. They were honest about how hard that was as a couple, and as individuals. Then I watched them rebuild; their hope inspired me.
When my own symptoms started, and I was diagnosed with Rheumatoid Disease myself, I was only able to survive because I had witnessed my Mum survive. She showed me how to handle such a devastating diagnosis with grace. She also taught me it was okay to be mad, be sad, to cry and to grieve. Most importantly she showed me that life wasn't over and there is always hope.
My parents' honesty about the impact of chronic illness within their marriage, helped my husband and I in our own marriage. It showed us that is was possible to adjust, reframe and move forward stronger and better.
When people comment on how positive I am, or how I am strong to handle the life I now lead with a chronic illness, my answer is always the same...I learned from the best." ~ Rachel Tait
5. Charis Hill
"Mine is Charis Hill of Being Charis blog.
She’s so kind and considerate, and she fights unfailingly for disability rights. She has AS, so her focus is on that, but she is inclusive to other chronic conditions. She’s an amazing writer and says many things I can’t seem to put into words. She’s unflinchingly honest about how f*ing hard life is for us, but she tells it with grace and empathy." ~ DS George-Jones
@BeingCharisBlog is unflinchingly honest about how f*ing hard life is for us, but she tells it with grace and empathy.
6. Lianne Beyerl
"Mine is Lianne Beyerl, amazing mother of a spoonie and supporter of my spoonliness (if that's a word 🙂 ). Also President of our state MN MECFS organization.
She gets it - she knows the exact right thing to say on a tough day, she knows what I mean when I say things that others don't get (i.e. chewing is an exercise for me today), and she is endlessly there for support. She also gives me friendly reminders to make sure I don't do too much and when I am to slow down - all in a way that makes me feel fully supported and capable at the same time." ~ Lisa Alioto
Lianne Beyerl gets it. She knows the exact right thing to say on a tough day. @MinnesotaMECFS
7. Dawn Kulesa
"Such a challenging question, as there are so many beautiful and brave spoonies worthy of such recognition. I suppose if I must narrow to one, I am in awe of my lovely warrior sister, Dawn Kulesa.
She has been fighting lymphoma for over 10 years now, and is the epitome of the consummate chronic illness fighter and spoonie. We are blessed to be neighbors, and help lift keep each other up, and cheer the other through the smallest of victories. She is such a giving soul, even as she fights fiercely through her own life battles. Love her, and so many of my warrior/spoonie sisters (and brothers)."
~ Terry Mayfield
8. Lady Gaga
"My spoonie woman role model is Lady Gaga who is living her life with Fibromyalgia in the open and without shame. She's showing the world that you can have a career, but sometimes, you have to put the brakes on it, in order to treat yourself and your condition - just like everyone else who has this nasty illness."
~ Pamela Jessen
@ladygaga lives with fibro in the open & without shame.
9. Rachel Jury
"My Spoonie role model is Rachel Jury of Rocking2Stomas
Rachel has inspired me both as a fellow Spoonie as well as in my blogging/advocacy work. She is passionate, knowledgeable, engaging, warm and interesting. The amount of work she has done for people who have ostomies is phenomenal and she is really making a difference to people in the urostomy and double bagger worlds through her strive for awareness.
Meeting her was fantastic, not just as friends, but the fact she was engaged and interested and helpful with the work I want to do and the messages I want to get out there - leaving me feeling really positive and empowered to follow my goals too. She will often put herself out (and often too far out) for others and takes a long on, despite her own health issues. A beautiful person, inside and out."
~ Natalie Gardner
@rocking2stomas is making a difference to people in the urostomy and double bagger worlds through her strive for awareness.
10. Alesha Trinowski
"My Spoonie Woman Role Model is my daughter, Alesha Trinowski. She has had Juvenille Arthritis since she was 2 years old. It has NOT stopped her!
As a single mom, (now with Fibromyalgia, as well) she had attended college, works full time and still manages to pull off the everyday life we all have to survive. Her life is not perfect and she doesn't pretend it is, but she never lets her illness come before an opportunity!
She has inspired me everyday of her 28 years, but now that I struggle with PsO, PsA, Fibro, epidermolysis bullosa acquisita and bullous pemphagoid, I am blown away by her perseverance!" ~ Ellie Mintell Trinowski
11. Lainie Ishbia
12. Jessica Keenan Smith
13. Jade Nelson
"I don't necessarily have a spoonie role model. I definitely admire a few amazing people like Lainie Ishbia Trend-ABLE, Jessica Keenan Smith of Living Well With Epilepsy, Jade Nelson. I admire them because of their passion, commitment, and determination to educate and support the spoonie community." ~ Christalle Bodiford
So tell me. Who is your spoonie role model? Share in the comments below.