A neurologist once told Elizabeth that all of her symptoms would get better if she had a boyfriend. This was his actual medical opinion. Not a joke. A boyfriend was the point.

She left shaking. It would take years before she stopped being shocked by it, and longer still before she understood how common that experience is. Nearly half of women with ME/CFS report not being taken seriously by disability evaluators. That’s only the people who said so out loud.

Elizabeth recently shared her full story with HealthyWomen: the nine misdiagnoses, losing her voice, two and a half years completely bedbound in the dark, unable to speak or move, and what our Invisible Illness Report found about the economic devastation this disease causes. She also talked about what comes next: federal advocacy, clinical trials, and why none of this is going to change until more people understand what ME/CFS actually is.