WattsWithPain
Stories about living with the complexity of multiple rare, chronic illnesses — and the stubborn art of carrying on.

I started writing this blog because I live with multiple rare, complex, overlapping medical conditions, and there is often limited information written by someone who actually has to live with a body that plays by few established rules. It can feel impossibly isolating at times — and completely overwhelming all of the time. Yes, it’s complicated and challenging, but it shouldn’t be something you have to navigate entirely on your own. So I figured if sharing the good, the bad, the funny, and the ugly sides of this rollercoaster helps someone else in any way — then every word is worth it.

I’ll try to tell the stories about what works for me and what doesn’t. I’ll undoubtedly cover some of what the standard medical FAQs skip — and sometimes it will be heavy, sometimes awkward, sometimes funny — and often just straight-out mind-boggling. But every step of my story is real.

It’s not unusual to feel dismissed or blamed when dealing with rare illnesses. So if you’ve ever asked yourself why me?, or you’re bone-tired of hearing “rare” and “complex” at every appointment — this blog is here to make you feel less like you’re carrying it all alone. Come on in. There’s no wrong way to navigate this mess. I’m a firm believer in the “do whatever it takes to get you through” strategy.

My motto is: Sparkle. Swear. Smile. Survive. — and that is the essence of this blog.

Disclaimer:
I’m not a doctor — just someone with a lot of medical letters on my file and a few too many hospital wristbands. Everything shared on this site comes from my personal experience living with complex chronic conditions. It’s not medical advice, and it shouldn’t replace professional guidance. Always speak to your healthcare team before making any treatment decisions (especially if it involves sparkles, spreadsheets, or ice cream therapy).