“I’m Diagnosed with a Chronic Illness; Now What Do I Do?”
When you feel sick, sad and lonely, it can be so valuable to connect with others who are going through a similar situation. Within the chronic illness community, you can find support from people who get you, share practical tips and learn from their experiences.
Yes, you have to be careful that you don’t fully identify with your diagnosis or get stuck in an online competition of who has it worse. But sometimes, online strangers can turn into virtual friends when you notice you have more in common than the ‘spoonie’ label.
The ladies below balance the hardship of living with chronic illness with hopeful messages and hilarious hiccups. Reading their stories can make you feel understood or put emotions into words you didn’t know how to express yourself.
So start following these 10 spoonies for your daily dose of support, inspiration and motivation!
1. Amanda – A Spiral Dance
Amanda is a British 30-something mom, wife and writer with multiple chronic illnesses. On A Spiral Dance, she thoughtfully shares how she leans on faith, creativity and simple self-care practices to move from overwhelmed to empowered. Amanda also doesn’t avoid difficult topics, like her article ‘We Need to Talk About Ableism’ shows.
But to me, what characterizes Amanda the most, is her warm-hearted personality. Her kindness and compassion shines through in every post, even when she’s struggling. She’s not afraid to open up about her hardships, but always with a glimmer of hope. Amandas words make you feel like someone understands what you’re going through, and that can be just what you need when you feel alone and helpless.
2. Natasha Lipman
You know how you have all these thoughts and feelings about what it’s like to live with chronic illness? Well, chances are, Natasha Lipman has already found a way to put your experience into words.
The chronic illness blogger and BBC journalist from London writes thoughtful pieces about all aspects of chronic illness and disability, from accepting the use of mobility aids and getting your first power wheelchair to her frustrations with pacing. I loved how eloquently Natasha once explained the pain of unfulfilled potential, that gap between knowing what you could do if only your body would cooperate and what you life looks like now. All those things about chronic illness that no one really talks about, Natasha finds a way to describe them.
If you like a non sugar-coated look into spoonie life too, check out Natasha’s blog, social media posts or her podcast ‘The Rest Room’.
3. Mindfully Evie
At only 24 years old, Evie’s words show wisdom beyond her age. When she became housebound with ME/CFS and chronic Lyme in 2016, Evie embarked upon a journey of personal discovery and growth.
For over three years, she could not leave the house, spending most of her days alone in a dark bedroom. Somehow, Evie learned to find happiness within herself and the confines of her home. Without ignoring the harsh reality of chronic illness, her book ‘Within These Four Walls’ is a beautifully written testament that, no matter the circumstances, there’s a life to be lived.
So whenever you’re looking from comforting and inspiring words from someone who’s lived through what she ‘teaches’ – and not just utters well-meaning but hollow phrases – turn to Evie’s prose and poetry. You’ll instantly feel more mindful.
4. Rhiann Johns – My Brain Lesion and Me
From a young age, Rhiann Johns has struggled with neurological symptoms like chronic dizziness, vertigo and weakness in her legs. After many years, she was finally diagnosed with Functional Neurological Disorder (FND).
On her blog My Brain Lesions And Me, Rhiann candidly reveals the most painful parts of living with FND: the uncertainty, the limitations and watching everybody move forward with their lives. She also describes the identify crisis so many of us face when chronic illness strips aways parts of who you are.
Rhiann documents all the aspects of life with an invisible illness in a moving way. Her articles and social media posts give insight into what it’s really like to live with a neurological condition. So if you want to raise awareness about chronic illness, make sure you follow Rhiann’s writings.
5. Zoe – Actively Autoimmune
We all know how important it is to move your body, but that’s easier said than done when you’re chronically ill. Thankfully, that’s where Zoe comes in!
As a young woman living with multiple chronic conditions, Zoe is the perfect person to provide accessible Pilates lessons through her website Actively Autoimmune. You can join her online exercise videos and or 1-on-1 sessions from your bed, yoga mat or wheelchair – whatever works best for you.
Her social media updates also exude sweetness and a sense of humor. After all, Zoe introduced us to the now infamous #waitingwiggle – the nervous foot taps seen in waiting rooms around the world.
When you’re ready to move your body in a way that suits you, look up Zoe’s Actively Autoimmune for helpful tips and exercise programs.
6. Cheryl – Arthritis Life
What do you get when you mix a love for occupational therapy and visual storytelling with an arthritis diagnosis? Highly entertaining TikTok videos, Instagram reels and a YouTube channel packed with daily living tips to thrive with rheumatoid arthritis (RA).
Cheryl shows that educating yourself about illness can be done in a light-hearted, humors way – without sacrificing on impact. On both her social media and website Arthritis Life, Cheryl features life hacks for everyday living challenges, patient stories and general education in a fun, talk show-style format. Her Rheumatoid Arthritis Roadmap helps newly diagnosed people navigate real life with RA.
No matter if you’re looking for in-depth advice, arthritis support or a quick laugh, Cheryl’s videos and posts will put a smile on your face.
7. CB – Pajama Daze
If anyone knows what it’s like to roll with the punches of illness, it’s this lady. CB survived multiple heart attacks and cancer, while also living with chronic conditions like Fibromuscular Dysplasia (FMD), arthritis and asthma. But that doesn’t stop her.
On Pajama Daze, CB not only shares her own experiences, but also curates helpful tips, feel-good entertainment and ‘pajama job listing’ that are compatible with your health. What’s more, she’s the author of ‘When Bodies Break’, a compilation of 32 stories of struggle, strength and survival through chronic illness.
Have your PJ’s become your superhero attire too? Then Pajama Daze is just for you.
8. Jenna Green
Ever since she was diagnosed with Multiple Sclerosis (MS) in 2016, Jenna Green has committed herself to bring awareness to those who suffer from MS and other invisible illnesses. This fierce lady is on a mission to change public perception and policies, through public speaking , fundraising for MS Society, her outspoken social media posts and website Full of Grit and Grace.
Jenna’s inner fire shines through in all she does, from pointing out systemic racism and ableism to discussing the stigma around mental health problems that often accompany chronic illness. She has also launched the Full of Grit and Grace Facebook group to help people that cannot work a standard 9-to-5 job make extra income.
So let’s follow Jenna to support her important advocacy work!
Website Instagram Facebook Group
9. Jemma Hunt – A Wellness Tale
In need of some soothing? Then go on a virtual walk with Jemma through the British countryside.
On her Instagram, Jemma Hunt shows how Natural Mindfulness helps her cope with being chronically ill for many years. She’s transformed her daily walks into therapeutic sessions, by connecting with the healing magic of nature and being in the present moment. How often do you really notice the soft breeze and birds chirping, the changing of the seasons and the sensations of plodding through the mud?
Jemma’s authentic stories of what mindfulness in a nature setting can feel like will inspire you to level up your walking routines. And through her reflective writings, the details and patterns you notice in the world around you can even be a mirror for what’s happening inside of you.
When you can use a welcome addition to your mental wellness toolkit, check out Jemma’s natural mindfulness guide.
Instagram Natural Mindfulness Tips
10. Marina – Parenting with Migraine
Coping with chronic illness can be challenging enough as it is. But when you have to put your baby’s needs before your own – when all you really want to do is crawl under the covers in a dark room – you may find yourself in a constant survival mode.
When the hormone fluctuations of pregnancy and labor worsened her chronic, episodic migraine, Marina became passionate about raising migraine awareness, making others feel less alone and educating about migraine. Because it’s much more than a headache – it’s a disabling neurological disease. But with the right headache specialist and migraine management plan, there is hope.
On Parenting with Migraine, Marina shares more valuable information and helpful migraine relief products, while you can catch a glimpse of the beauty and chaos of parenting with migraine on her Instagram account.
Obviously, with all the inspiring social media accounts and helpful chronic illness blogs out there, this list is far from definitive. So please share with us; which spoonies do you find inspiring to follow?
Because we’re in this together.
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