Chronically Ignored

When I push too hard and end up bedridden for days, I get accused of faking it. Doctors have told me my nerve pain was 'all in my head' because a test didn't show it. This is what dismissal actually looks like.

People with chronic illness and disability get dismissed constantly: by the public, by employers, by healthcare providers, sometimes by their own friends and family. Symptoms get read as exaggeration. Limitations get read as a choice, not a medical reality being lived every day.

I've experienced this directly. When I push myself too hard and end up bedridden for days afterward, I get accused of faking it, or not trying hard enough. Miss too much work and the read is laziness, not illness. Doctors have told me that the nerve pain and fatigue I deal with daily were "all in my head," because the test they ran didn't show anything definitive. Friends stop inviting me to things because I cancel too often when symptoms flare without warning.

That kind of dismissal doesn't stay external. It gets internalized: the doubt starts to feel deserved, the inability to function like a healthy person starts to feel like a personal failure rather than a fact about a body nobody chose.

None of us chose this. We're doing the best we can with the actual cards we were dealt, and the limitations are real whether or not a lab test happens to catch them.

What changes this starts with basic education: understanding that conditions like fibromyalgia, ME/CFS, and endometriosis don't show up cleanly on standard imaging and bloodwork, and that doesn't make them less real. It means checking ableist assumptions before they turn into a comment. It means understanding that an accommodation isn't an advantage, it's what makes participation possible at all.

We're not asking to be believed unconditionally. We're asking not to have to prove it every single time just to be treated like the reality we're describing is real.

*My book, What Do Patients Want?, goes deeper into this.*