How My Struggle With Chronic Illness Unexpectedly Turned Into Advocacy

Never in my wildest dreams did I picture myself as a chronic illness advocate. Seriously, if you had told me as a kid that one day I'd be fighting for the rights and recognition of people with psoriasis, fibromyalgia, psoriatic arthritis, and endometriosis (yeah, I hit the jackpot), I would've asked you what you were smoking. But life has a funny way of throwing curveballs, and after being diagnosed with not one but multiple chronic conditions, I found myself thrust into the world of advocacy. Why? Because someone's got to do it, and apparently, that someone is me.

From patient to advocate

How did I become a chronic illness advocate, you ask? By accident, honestly. After spending a decade battling the healthcare system and advocating for myself in a world without the social networks we have today, I started connecting with others who "got it" on Twitter. It turns out I'm as chatty online as I am in person. But 180 characters (it would be a while until they upgraded to 280) wasn't cutting it. I needed more space to vent, share, and connect. That's how my blog was born.

From ranting about my multi-layered chronic life and the aftermath of a botched hysterectomy, I found myself diving into a community of bloggers. The next thing I knew, I was reviewing products for people with disabilities and chronic conditions. Fast forward two years, and I'm contributing to the Social Health Network’s Psoriatic Arthritis Community. The last decade has seen me write for various health sites, participate in patient opinion panels, and so much more. It's been a ride, to say the least.

The future of my advocacy

What does the future hold for my advocacy work? Well, it's a bit like predicting the weather with my fibromyalgia—uncertain but always prepared for a storm. My focus shifts as my conditions evolve. I aim to produce content for all my illnesses during their awareness months, but sometimes, I zero in on one more than the others. But here's the kicker: chronic illnesses don't just need attention during their designated months; it's a full-time gig. As long as I can think and type, I'll be here, shouting into the void for those in pain.

Tips for aspiring advocates-be you!

Thinking about diving into the world of chronic illness advocacy? Here's my advice: Be real. Share your story, but never compare it to someone else's. Your journey is as unique as you are. Share what feels right, and have a chat with your family about what they're cool with you sharing.

Start using your existing social media platforms; you don't need to spend a fortune to make a difference. And if you're looking for a place to start, join me and countless others at the Social Health Network. They'll teach you everything you need to know about advocating for your condition.

Becoming a chronic illness advocate wasn't my life plan, but it's become one of the most rewarding roles I've ever taken on. I've laughed, cried (a lot), and made connections that have sustained me through my darkest days. So, here's to making the best of the hand we're dealt and fighting the good fight, one sarcastic comment at a time.