Patient Advocacy & Courage; Becoming a Voice For Many

Do you know how much courage it takes to tell 200 strangers it hurts to have sex?  Courage.

I have become the person I wanted to lean on when I was diagnosed. I’ve become more than that. I’ve become a voice for so many who are afraid to or don’t know how to speak out. It takes courage to be vulnerable but if I don’t do it, who will? I began the Sacramento area Spondylitis Association of America Support Group thinking I’d start things off and then pass the baton, but I’ve discovered I’m the one who was meant to facilitate it all along even though I’m terrified I’ll fail.  If I have helped one person along the way I know I’ve made a difference. What a funny thing, you don’t realize how much it would have meant for me to have a support group to attend when I was first diagnosed.  It didn’t exist because I hadn’t revived it yet (there was one years before that disbanded). Some call it destiny, fate, a prophesy; I call it doing what needed doing. I was the person who didn’t take a step back when the gods called on someone to volunteer.

Courage.

Glenn Jones/Ikona Photography ©2015
Glenn Jones/Ikona Photography ©2015

I prefaced this post with what you just read so you know why I open my mouth.  Why I allow myself to be catapulted into roles of advocacy, vulnerability, and sometimes special treatment because I’m loud with my story.  If you have already read my previous blog post (I Said “Yes” to Big Pharma) you’ll know I just finished telling my story at a pharmaceutical company conference.  I can’t express how empowering it felt to be in a room full of people who were so interested in my personal experience with Ankylosing Spondylitis.  Telling my story to people who have the power to influence how my disease is viewed and treated from a pharmaceutical perspective is amazing. I was able to sit in on the tail-end of a session where words that I had said just minutes before were being referenced during a separate presentation.

Unless you are sick yourself you may not realize how good it feels to be trusted with my own story. To be given a microphone and a platform on which to stand gives me reason to fight another day for more awareness, better treatments, a cure… Especially when at the listening end are ears of people whose jobs exist because there are sick people like me.

It is my story but you’d be amazed how many people have tried to tell it for me and even script my future without my input. To put words into our mouths is degrading, disrespectful, and shows your own fear of trusting us with our bodies and our diagnoses. If you assume you know what’s best for me, for whatever reason, you’re committing the first wrong. There are no rules of order, no checklist, for how to support me, a chronic disease warrior.  Yet unspoken rule #1 is to realize that you do not live in our bodies; we do. That means we have first and final say in what we do with them. We likely know 100% more than you do about how we feel when we wake up, what treatments we’ve tried and what works best for our individual bodies.

With that background, I’m pleased to announce that I’ll be a live patient journalist during the American College of Rheumatology Annual Meeting in San Francisco, November 7-11, 2015.  My live tweets, instagram pictures, facebook posts, and blog entries will be broadcast by and through This AS Life (and its social media channels), a website created and run by Novartis. A fun hashtag, #rheumers, will accompany many posts.

*Attendance at the American College of Rheumatology Congress sponsored by Novartis

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