I’m 47 and have been living with chronic pain and profound fatigue for years now. I rely on a wheelchair for things like shopping or walking the dog. I can’t stand for long or walk very far. Everyday things—things I used to take for granted—are now major obstacles.
Despite countless tests, appointments, and even private consultations, I still don’t have a clear diagnosis. Most recently, a private doctor suggested possible hEDS (hypermobile Ehlers-Danlos Syndrome) or POTS (Postural Orthostatic Tachycardia Syndrome), but also said that “even if it is one of those, there’s not much we can do.” He encouraged me to just accept things.
But I can’t accept the idea that I’m just stuck like this without even a name for what I’m going through.
I’ve heard “medically unexplained symptoms” more times than I can count—and every time, no matter how gently it’s said, it feels like I’m being dismissed. Like I’m too complicated, too messy, too inconvenient. Like my pain is a mystery no one wants to solve.
And the thing is, I do have documented conditions: a hypermobile coccyx, Bertolotti’s syndrome, stage 4 endometriosis, scoliosis, and spinal nerve compression that required surgery. These aren’t theoretical. They’re real. They’re in my records and in my body. I understand how central sensitization and the nervous system can amplify pain—but I also know what’s happening to me is not just in my head.
I work, and I fight to keep working, because it gives me structure and identity. But the effort it takes is immense. I use pain relief sparingly so I can’t be told I’m psychologically dependent on it—if anything, I avoid it unless absolutely necessary. Yet when pain relief is discouraged without alternatives, it feels like I’m being asked to endure without tools or support.
What I want—what so many of us want—is not a cure. It’s a name. Something that says: Yes, you are seen. You are believed. What’s happening to you is real. A name opens doors. A name brings access. A name brings peace.
If you’ve ever felt dismissed or invisible because your symptoms didn’t come with a neat label, I want you to know—you’re not alone. I see you. And I’d love to hear from others who are walking this same uncertain, exhausting road.
Thank you for reading.
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