Non-Hodgkin's Lymphoma

Hi everyone,

I’ve been part of The Mighty for years and, like many of you, I live with multiple autoimmune conditions alongside other health issues; my first was Autoimmune Pancreatitis diagnosed back in 2011 after months in the ICU. I’ve seen and managed a lot along the way, and I’m grateful that 2 of my 4 main conditions are in remission right now. I know firsthand how exhausting it is to manage pain, symptoms, labs, doctors, and the constant need to advocate for ourselves.

I’ve also been supporting my father for the past 2+ years as he faces a rare form of non-Hodgkin lymphoma. I’ve leaned on my own patient experience to advocate for him and coordinate between his doctors which has shown me the challenges from the caregiver’s side too.

Because of what I’ve experienced personally, and what I see in autoimmune support groups like this one, I’m exploring the possibility of building something that could truly support people like us.

👉 Before I go further, I’d love your input: what would actually make life easier for you as a chronic illness patient or caregiver?

Tools to track symptoms/labs/meds? Clearer explanations of results? Help preparing for appointments/procedures? Care coordination? Emotional support/connection (beyond what we’re lucky to get here or from loved ones)? Or something else entirely? I’m not here to promote anything — just to listen and learn from your experiences. Please feel free to share in the comments (or DM me if you prefer). Your feedback would mean a lot 💙

Thanks!