September 20, 2023
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There are countless chronic condition and disability advocates on social media committed to spreading awareness and breaking down stigma.
One of the best things I ever did was follow accounts on social media that centered around chronic illness and disability.
They inspired me to create my own content on social media with The Chronic Notebook and introduced me to a side of social media focused on education, advocacy, and community.
The accounts by these content creators, and so many others, have made a significant impact on my mental health and improved my general awareness about navigating life with a chronic condition or disability.
It’s been extremely difficult to narrow down this list, but here are, in my view, some of the greatest accounts out there today.
Jess’ Instagram page @thechroniciconic is one of the most authentic on the internet, especially when it comes to life with chronic illness and disability.
Jess’ posts often detail the struggles she and others face around ableism, the lack of accessibility, the difficulties of accessing healthcare, and stigma. Her content is real and unfiltered. Her willingness to share these often difficult moments, while maintaining her own boundaries, has earned her the respect, admiration, and gratitude from her many followers.
She also occasionally sells super cool merchandise.
Sonny’s page @livedexperienceducator is a wonderful place to learn and explore all things about being neurodivergent. Their colorful, beautifully crafted content covers a variety of conditions and raises awareness about the symptoms, experiences, and misconceptions around them. They also offer free printable resources.
Lauren’s content on @the20somethingspoonie is unique, and I haven’t found anything else quite like it on social media. Her content is centered around life hacks for chronic illness and disability. She provides tips on anything, including dating, low energy hobbies, cleaning, reading, sex, and cooking.
There’s something to learn from every one of her thoroughly researched posts.
Walela’s work is hard to categorize, and this is not a bad thing.
This is because Walela’s writing, poetry, and creative expression on @itswalela constantly push boundaries and lead us toward an innovative future of greater cultural understanding and nuanced conversation.
Their content often centers on themes of illness, disability, mortality, and pain, but they discuss how these topics intersect with others, like race, queerness, abuse, colonialism, and more.
Walela has also recently signed a book deal, and one look at their page will tell you why — their writing truly stands out.
Stephanie’s content on X is thoroughly educational, interesting, and relevant. Her posts cover topics around disability justice, rights, and advocacy. She often connects these topics to real-time events and current news.
Stephanie also posts about issues surrounding accessibility, COVID-19, healthcare costs, and her own personal experiences. You can find her on the X platform @stephtaitwrites.
Charis’ account @beingcharisblog and connected blog are focused on social justice and activism for marginalized disabled and chronically ill communities.
Their work on intersectional activism draws attention to some of the most important political issues surrounding disability and how these issues are connected to ableism. Charis’ page is a quintessential space for engaging and learning more about these topics.
Ola’s writing on the X platform focuses on the connection between ableism, racism, misogyny, and diversity within the disability community.
She writes powerfully on intersectionality and its importance in advocacy and activism work. Ola is one of the leading voices in the space, leveraging social media to spark social justice movements. She has also conducted interviews about accessibility issues, the impact of the COVID-19 pandemic on the disabled community, and more.
Karl, who lives with ADHD and cerebral palsy is a poet and writer articulating his experience on his handle @inadarkwood. His tweets are largely focused on an important topic: the COVID-19 pandemic and its continued relevance for disabled and chronically ill people.
At a time when this topic is becoming increasingly neglected, Karl’s efforts to continually raise awareness about COVID-19’s impact are invaluable.
He also discusses political, social, and cultural issues with deep insight and clarity.
Lucy’s YouTube channel is, in her words, “changing how the world views blindness.” Her content focuses on disability advocacy, raising awareness about life with visual impairments, and busting the stigma surrounding visual impairments.
Her videos demonstrate the accessibility issues that exist within our society and the difficulties disabled people have navigating these. Her warm, personable, and bright presence is a welcome addition to any social media feed, offering education, knowledge, and an authentic perspective on life as a blind person.
Izzy’s YouTube channel is a wonderful place to learn all about genetic diseases, particularly Ehlers-Danlos Syndrome (EDS). Izzy also covers some of the many comorbidities of EDS including POTS and gastroparesis.
Izzy’s videos detail the often difficult journey to get diagnosed and treated for rare diseases.
She provides a wealth of information on the signs and symptoms of EDS, as well as medical genomics and research. She also addresses the misconceptions and stigma surrounding chronic illnesses and their symptoms.
Mesha lives with inflammatory bowel disease (IBD) and has a stoma bag. His content has been instrumental in paving the way for increased awareness around conditions that affect the gut. He also addresses harmful misconceptions about IBD and other invisible conditions.
His videos offer a glimpse into the reality of managing his condition. Mesha provides insights into exercising with IBD and navigating mental health challenges and interviews other chronic condition advocates, giving them a platform to share their stories.
Mesha also has his own successful business selling medical supplies for those living with stomas.
Jameesha’s content on her channel You Look Okay To Me is really enjoyable, educational, and interesting. Her content covers a diverse range of topics, including medical racism, the history of medicine, chronic illness and disability in the media, and her personal experiences.
Jameesha’s channel feels like an intimate collection of thoughts, feelings, realizations, and interests, presented to the audience like a virtual diary. You never know exactly what might be coming next, but it’s guaranteed to be compelling and worth the watch.
Eliza’s content on @disabled_eliza is a wonderful mix of lighthearted and serious. Eliza creates engaging TikToks about disability awareness, accessibility, and ableism.
Their passion for creating change and their sense of humor shine through. Their content has also inspired many disabled, chronically ill people to feel more confident and comfortable about using mobility aids.
Eliza creates disability-centered content and content around fashion, days out, and body confidence. Overall the page provides a safe and educational online space for many to benefit from.
Imani Barbarin is one of the most well-known figures within the disability advocacy community, and for good reason. She has been creating informative, transformative, and important content on @crutches_and_spice for a long time. She tackles issues around ableism, racism, politics, and access to care.
Her take on current events continually offers fresh and significant perspectives covering a variety of issues and their impact on different communities.
Her genuine, impassioned call for real change is wide-reaching and always thought-provoking.
There’s a reason why Spencer has over 4 million followers on TikTok, @spencer2thewest. It’s not just his content, but his persona, that stands out on the platform. Spencer combines videos about disability awareness, life hacks, queerness, and humor with videos about pop culture, movies, the news, and everything in between.
His videos are guaranteed to be educational or entertaining, or an amazing mixture of both.
Hermon and Heroda are deaf twins using their platform to raise awareness about the stigma surrounding being deaf and disabled. Their videos, featuring flawless outfits and characteristic dance moves, serve up truths and bust misconceptions.
Overall, their feed is a wonderful place to learn about the experience of being deaf and soak up some iconic fashion inspiration in the process.
If you’d like to follow me, you can find me at @the_chronic_notebook, where I try my best to smash the stigma around chronic illness and disability and validate the feelings and experiences of people navigating life with chronic illnesses and disabilities.
Fact checked on September 20, 2023
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