Navigating chronic illness with resilience, self-advocacy, and hope

Holley B.

Living with over 25+ years of TWO invisible chronic illnesses has been a test of both my body and my mental health and spirit. For years, I felt dismissed and gaslit by doctors, misunderstood by those around me, and unheard in a world that often overlooks the complexity of invisible illness. My symptoms were real, but the support was not — and that left me feeling isolated, defeated, and at times, hopeless. But I made a choice: I would become my own best advocate. I researched, I asked hard questions, I pushed back when I was minimized, and I refused to give up on myself. I learned to listen to my body, to speak up in medical appointments, and to build a team that believed me. Balancing these health challenges while parenting, healing from trauma, and staying sober wasn’t easy — but it taught me what true strength looks like. I’ve faced discouragement, flares, and fear. But I’ve also discovered peace through acceptance, connection, and even joy within the struggle. If you’re dealing with chronic illness and feeling unheard, burned out, or alone, I want you to know that you matter. You deserve care, compassion, and hope — and together, we can talk about how to fight for it.

Life with a chronic illness and/or disability - the good, the bad, the complicated

Setrida N.

I have had chronic pain my entire life, though no doctors had been able to pinpoint it. Eventually I got some help managing it, but then suddenly it got much, much worse. I was diagnosed with Lyme disease and treated aggressively with antibiotics, but unfortunately much of the damage to my body was already done. After years of worsening symptoms and muddling through the healthcare system I have gained an equilibrium - a care team that is mostly steady and consistent, treatments that keep my illnesses generally under control. It took several years to diagnose me with POTS, hEDS, and focal dystonia, and that experience is hard to understand when you haven't lived it. But I am here to talk to you and support you through the grief and anger and all the other complicated feelings that come with this immense trauma.