The celebrity Jameela Jamil journey with Ehlers-Danlos is more than just a story of pain—it’s a powerful narrative of transformation, advocacy, and hope. Known for her role in the hit TV show The Good Place and her outspoken activism, Jameela has turned her personal struggles with a rare genetic condition into a global conversation about invisible illnesses. Living with Ehlers-Danlos Syndrome: A Lifelong Challenge Ehlers-Danlos Syndrome (EDS) is a group of rare connective tissue disorders…
The celebrity Cherylee Houston journey with Ehlers-Danlos is one of grit, perseverance, and fierce advocacy. Known for her beloved role as Izzy Armstrong on Coronation Street, Cherylee has not only made her mark on British television but also on the hearts of millions through her openness about living with a debilitating condition. Her story sheds light on the challenges faced by individuals with invisible illnesses and offers hope for those seeking representation and understanding. Who…
The Harsh Reality of Living Alone With Fibromyalgia Living with fibromyalgia is hard enough—but facing it alone brings a whole new level of difficulty. The constant pain, fatigue, and unpredictability of the condition are made even more daunting when there’s no one else in the home to offer support, comfort, or simply presence. For many, living alone with fibromyalgia means navigating a world that’s not only physically demanding but emotionally isolating. This experience is not…
Dear Doctor: What Not to Say to Me and Other Fibromyalgia Patients Dear doctor, we understand your job isn’t easy. We know you face long hours, mounting pressure, and endless patient charts. But we also know what it feels like to walk into your exam room carrying pain that never fully goes away. To describe symptoms we barely understand ourselves, only to leave feeling unheard, unseen, or worse—blamed. For those of us living with fibromyalgia,…
When It’s Time to ‘Break Up’ With Your Doctor In theory, your doctor should be your partner in health—someone who listens, respects, and supports your journey toward wellness. But in reality, not all doctor-patient relationships work out the way they should. Sometimes, despite years of visits and trust, the relationship no longer serves your needs. And just like any other relationship, there may come a time when you have to walk away. Breaking up with…
What It’s Like to Be an Empath With Fibromyalgia To be an empath is to feel the emotions of others as if they are your own. To live with fibromyalgia is to endure chronic, often invisible pain that touches every part of life. When these two identities coexist within one person, the experience becomes more than just difficult—it becomes a delicate balancing act of emotional and physical survival. Being an empath with fibromyalgia is living…
Why I Haven’t ‘Gotten Used to’ My Fibromyalgia When people hear that I’ve been living with fibromyalgia for years, their reaction is often rooted in misunderstanding. They assume that with time, I must have adjusted to the pain, adapted to the fatigue, and learned to carry on like nothing happened. They ask, “Haven’t you gotten used to it by now?” with the kind of casual expectation reserved for everyday inconveniences. But fibromyalgia is not something…
How It Feels to Wear My Disability Blue Badge on the Train When I board a train wearing my disability blue badge, I’m not just carrying a plastic card or lanyard. I’m carrying the invisible weight of judgment, assumptions, and sometimes even shame. That small symbol, intended to offer support and recognition, can feel more like a spotlight than a shield. And yet, I wear it—because I have to. Disability, especially when it’s invisible, invites…
When the Brain Fog Comes Before Your Fibro Diagnosis Before the widespread pain, before the chronic fatigue, and before any doctor uttered the word fibromyalgia, there was brain fog. Not a little forgetfulness, not occasional distraction, but an all-consuming mental haze that made everyday thinking feel like pushing through wet concrete. For many, this brain fog begins long before a formal diagnosis, making it one of the most unsettling and often overlooked symptoms in the…
The celebrity Lena Dunham journey with Ehlers-Danlos has emerged as a powerful story of vulnerability, resilience, and truth-telling. Known for her acclaimed work as the creator and star of the HBO series Girls, Lena Dunham has long been celebrated for her unapologetic honesty. Her battle with Ehlers-Danlos Syndrome adds a profound layer to her public persona, shining a light on the lived reality of those facing chronic, invisible illnesses. What is Ehlers-Danlos Syndrome and How…