Dear Telegraph, Let’s talk.
Recently, your pages featured an article that stopped many of us in our tracks, as it was one that accused people of sharing their raw, unfiltered reality of living with chronic illnesses and disabilities on social media as a lifestyle trend. Using damaging labels like “sickfluencer”.
To suggest that young women and marginalised groups are turning disability into a cool accessory is not just deeply misinformed, but genuinely cruel. It completely erases a lifetime of hiding, suppressing, crying behind closed doors, and fighting for basic human dignity and rights.
Nobody wakes up and chooses to live a life of chronic pain. Nobody scripts a storyline of medical isolation because it’s fashionable. Disability didn’t become cool one day, we just finally got tired of disappearing to make everyone else feel more comfortable.
Breaking The Silence Of Our Invisible Battles
The core fallacy of articles like yours is the assumption that if you don’t look sick, then you must be fine. But not every disability is visible. In fact, some of the most agonising and life-altering conditions are entirely hidden behind a smile, a screen, or a desperate daily effort just to keep upright.
For a massive part of my life, I have lived with that silent struggle. Like so many others, I spent decades dealing with baffling symptoms, chronic pain, and physical unpredictability without any answers or explanations from numerous doctors who I turned to for help and understanding. For an entire lifetime, I was medically gaslit and told my symptoms were in my head, dismissed by a medical establishment that didn’t know how to listen, and left to navigate a labyrinth of suffering entirely alone.
It wasn’t until I reached 36 years old that I finally received a diagnosis: Hypermobile Ehlers-Danlos Syndrome (hEDS), which is an inherited loose connective tissue disorder that affects collagen production throughout the body. Thirty-six years of wondering why my body felt like I’d been hit by a bus and set on fire each day, why regular movements caused me such severe injuries, and why I was constantly exhausted no matter how much I slept, all while trying to function as a mother, a professional, and a human being.
And the hardest pill to swallow? Because hEDS is genetic, it doesn’t stop with me. Both of my children face the exact same medical issues as I, through the same inherited connective tissue struggles. Knowing that my children have to navigate a world that treats invisible illness with such skepticism and mockery breaks my heart in ways that words can barely capture.
The Real Cost Of Self-Advocacy
When you spend a lifetime being dismissed, finding a name for your pain isn’t a trend, it is a lifeline. It takes an astronomical amount of courage to ever stand up, self-advocate, and seek help when the medical world has repeatedly shut doors in your face and told you your symptoms don’t exist.
To have that hard-fought self-awareness weaponised and mocked as a performance is devastating. Terms like “sickfluencer” shame people for building digital communities out of sheer isolation and fear. When you are bedbound, housebound, or simply unable to maintain a traditional 9-to-5 due to a body that you cannot predict, the internet becomes a vital lifeline. And one that allowed me to gain a diagnosis for a lifetime of confusion from doctors, yet strangers online spotted my symptoms in seconds. Sharing our realities online therefore isn’t about seeking glamour or praise; it’s about survival, connection, and making sure that the next generation doesn’t have to suffer in silence the same way that we have.
Finding Hope In Being Open & Honest Online
Ignorance surrounding hidden disabilities thrives in the dark, but it dissolves the moment that we shine a light on it together. To anyone out there who feels completely lost, gaslit by doctors, or invalidated by careless media narratives: You are not imagining your pain. You are not alone.
While the headlines can be discouraging, please look around at the community we’ve built. Look at the strength of parents fighting for their children, the resilience of people navigating invisible storms every single day, and the profound grace of a community that truly sees you.
Let’s trade judgment for empathy and replace mockery with compassion. Together, we can lift each other out of the shadows, share our truths unapologetically, and build a world rooted in love, understanding, and real support for those who have nowhere else to turn.
Sending so much love and strength to anyone fighting a battle that others know nothing about.
With warmth and solidarity, Tracy Kiss
Writer, Advocate, and Fellow Traveler in the Invisible Illness Journey
ASD, ADHD, IBS, hEDS, Twisted Bowels, Insomnia, presently testing for POTS & MCAS
