What Four Years of Not Being Believed Taught Me About Chronic Illness

I got sick the week of Christmas, 2021. At the time, I thought it was just bad timing — a virus during the holidays, a few rough days, and then back to normal. I did not know that “back to normal” was a place I would spend the next four years trying, and failing, to find my way back to.

What followed wasn’t dramatic in the way illness is often portrayed. There was no single collapse, no clear before-and-after. Instead, there was a slow, disorienting unraveling. Fatigue that didn’t lift with rest. Chest pain that came and went without explanation. My muscles seemed to lose strength for no reason I could point to. Stairs, which I used to take without a second thought, became something I had to plan for — counting steps, pausing halfway, feeling my heart pound in a way that didn’t match the effort. Hiking, something I loved, became something I grieved. And every time I caught even a minor cold, my breathing would fall apart in a way that frightened me.

For almost four years, I didn’t have a name for any of it.

The Diagnostic Odyssey

I want to be honest about this part, because I think it matters as much as the symptoms themselves: for most of those four years, I was not believed. Not outright dismissed, usually — it was subtler than that. Suggestions that it was deconditioning. Gentle implications that stress or anxiety were driving what I was feeling in my body. The quiet, corrosive experience of being treated as an unreliable narrator of my own physical experience, again and again, by people whose job it was to help me.

I am a therapist. I understand the mind-body connection intimately, and I believe in it. But understanding that connection didn’t stop me from also knowing, in my body, that something physiological was happening that no one seemed able or willing to name. That gap, between what I knew and what I could get anyone to confirm, was its own kind of wound.

It turns out this experience is remarkably common. A 2022 study analyzing survey responses from long-COVID patients found that many described their interactions with medical providers using the language of “gaslighting” — encountering professionals who dismissed their symptoms, which in turn led to prolonged diagnostic odysseys and long delays before receiving any treatment at all (Au et al., 2022). Research on invisible chronic illness more broadly describes a related, often unspoken experience: a kind of disenfranchised grief, where the losses illness brings — of physical ability, of identity, of a future you had planned on — go unacknowledged because they don’t fit the shape grief is “supposed” to take. There’s no funeral for the version of yourself who could hike a mountain without stopping. No one sends a card when you quietly give up the plans you used to make without thinking twice.

I finally received an official diagnosis this year, at the University of Colorado Anschutz long-COVID clinic. Almost four years after Christmas 2021. I remember feeling relief so large it startled me — and grief arriving right alongside it, because a diagnosis doesn’t undo the years of not being believed, and diagnosis doesn’t come with a cure.

What This Changed About How I Practice

I didn’t become a different therapist because of this experience, but I became a more honest one. I understand now, from the inside, what it feels like to need care and to also need to conserve every ounce of energy just to get to that care. This is part of why offering telehealth isn’t a convenience add-on in my practice — it’s a core piece of how I try to make therapy genuinely reachable. Research on telehealth for people managing chronic illness and disability consistently points to the same thing I’ve lived: that removing the barriers of travel, unpredictable symptoms, and limited energy measurably widens who is able to access consistent care, without sacrificing its effectiveness (Bulic et al., 2020). On a bad flare day, a video session from your couch might be the difference between getting support and getting none at all.