#WEGOHEALTH #HAWMC Day 7: How did you decide to start advocating?
I’ve always told people I was ill but it was so hard to explain when you have no diagnosis. But then I did. It had a name, acromegaly, but no one knows it …Not much has changed.
In 2009 I started an Etsy shop, VivaLaFrancedesign.etsy.com, (it’s empty at the moment but in “sales” you can see designs) to sell handmade cards. It was a way to be creative when I was inspired and up to it. At the time, Etsy was still evolving and shop owner, handmade centric. People had blogs and offered featured spots. I’d tell my story… Graphic designer and artist, struck down but not out, with a rare pituitary disease. Photos of my cards were featured with a link to my shop. Simple.
I never thought of not mentioning my illness and things evolved slowly. It was just my TRUTH. I wasn’t even aware I was advocating.
I eventually knew I wanted to advocate but wasn’t sure how or when I’d be up to it. People have been telling me to share my story, blog, write a book…anything. A blog has been on the list forever but I wanted the timing to be right. When is timing ever right? In my life …Never really …Just keep rolling with it.
My New Year’s resolution 2016 was to build and launch my own art and design website so that I would have an online portfolio. In my bio, I write a line about acromegaly; however, by then, I was advocating a bit more when I discovered Patient Worthy. My advocate and now friend is unbelievably supportive and encouraging. I long outgrew the acro-group I had only been in for slightly over a year. I saw so much missing that I was dismayed but determined and inspired. At about the same time, WEGO Health reached out to me through the very site I started as a New Year’s resolution! I started with a bang. A 30 day challenge that began on November 1st, Acromegaly Awareness Day. Kinda serendipitous, don’t you think!
So my slow, non-deliberate start has evolved and formed with a glorious brilliance. Two blog features plus my very own first blog post on November 1 st. An acromegaly poster being printed and distributed by Patient Worthy, my “Spring Figs” oil painting in a rare disease competition for Rare Disease week in Washington DC (vote here) and a fundraiser (11 days left) to start a nonprofit for people with acromegaly for alternative and complementary care. Something that is shamefully and grossly missing.
It’s snuck up on me! And it is magnificent to have a voice, goals and drive.