Chronically The Patient Empowerment Newsletter
By Roi Shternin
In the last few years, I’ve noticed more and more of my chronically ill and disabled peers bravely sharing intimate details of their lives on social media - from stoma bags to feeding tubes. And I’ll admit, at first it made me squeamish. But I’ve come to realize this “illness porn” is needed to lift outdated taboos and stigmas.
Complaints about oversharing medical details are misguided. With 1 in 2 people in the US chronically ill, this visibility is empowering those previously shamed into silence and isolation. As someone proudly living with disability, I greatly admire how conditions once hidden like mine are now being shared proudly and publicly.
Activists like Cheyenne Bristow and Emily Ladau inspire me daily with their bold advocacy and truth-telling. Their leadership in impactful hashtag campaigns like #OstomatesofInstagram and #NoBodyIsDisposable is truly changing conversations and social narratives. While critics warn of potential privacy violations or negative mental health impacts, I believe the sense of community, support, and solidarity fostered by these platforms far outweighs the risks.
Online groups reduce isolation and provide critical peer support so lacking in the mainstream healthcare system. Research shows this representation also reduces stigma by educating the previously uninformed public on the daily realities of living with chronic illness. There is no doubt in my mind that social media is progressively transforming our culture’s dangerously narrow perceptions on health, wellness, and what constitutes an “acceptable” body.
Of course, there is still much more change needed in society. But the vocal minority of warriors now charting this new path online give me immense hope. With chronic conditions rapidly rising worldwide, we deserve online spaces to share our stories authentically, feel accepted as we are, and be empowered to thrive.
I urge anyone who feels squeamish or uncomfortable seeing our sick, disabled, or non-conforming bodies to seriously reflect deeper on their privilege. We did not choose this life, but we can choose to live it visibly and unapologetically, for both ourselves and each other. Our bodies tell stories - now it’s time those stories get heard, seen, and understood.
The act of proudly sharing our unfiltered realities disrupts notions that we should be ashamed or hide our differences. It refutes the idea that there is any one “normal” or “perfect” body. We are pushing back against stigma and redefining strength on our own terms. While ignorance still abounds, I believe empathy and community will prevail if we continue raising our voices. To any chronically ill or disabled folks reading this - you are the future. Let your truth be heard.
Further reading:
Influencer Profiles:
- Alice Wong :
Twitter: @SFdirewolfAlice Wong is a disability activist, media maker, and consultant. She is the founder and director of the Disability Visibility Project, an online community dedicated to creating, sharing, and amplifying disability media and culture.
- Imani Barbarin :
Twitter: @Imani_Barbarin Imani Barbarin, also known by her handle Crutches&Spice, is a writer and activist who focuses on issues at the intersection of race and disability. She is known for her insightful commentary and advocacy for inclusive representation.
- Shane Burcaw :
Instagram: @shaneburcaw Shane Burcaw is an author, speaker, and activist who, along with his wife, runs a popular YouTube channel called "Squirmy and Grubs." He has Spinal Muscular Atrophy and uses his platform to challenge misconceptions about disability and interabled relationships.
- Jessica Grossman :Instagram: @jessgrossmanTwitter: @JessGrossman Jessica Grossman is the founder of Uncover Ostomy, an online awareness and support campaign aimed at breaking down the stigma surrounding ostomies. She has been a strong voice in the community, using her personal experience to empower others and educate the public.
Hashtag Campaigns:
- #OstomatesofInstagram:
Instagram: Explore posts tagged with #OstomatesofInstagram
- #NoBodyIsDisposable:
Instagram: Explore posts tagged with #NoBodyIsDisposable
Additional Reading and Resources:
Social Media and Chronic Illness: An Impact That Transcends a Screen(cnet)
WHO data on the rise of chronic illness:
Report: Global Status Report on Noncommunicable Diseases 2020
Community and Support:
Platform: The Mighty - A digital health community created to empower and connect people facing health challenges and disabilities.
- Online Peer Support:
Community: PatientsLikeMe - An online patient network for sharing symptoms and treatment experiences, while connecting with others.
- Empowerment through Storytelling:
Project: The No Stigmas Project - A community for mental health advocacy and storytelling.
I'm Roi Shternin, a health advocate, speaker, and entrepreneur driven by my own experiences with chronic illness to make a lasting difference in the healthcare world. My mission is to challenge misconceptions about disability, promote patient rights, and harness the potential of technology to improve healthcare accessibility. Through speaking engagements and a robust social media presence, I strive to empower others and ignite positive change in healthcare communities globally.
You can find my work here.