Today begins Lupus Awareness month – and a year since I first shared my diagnosis. I remain so grateful for your massive outpouring of support. We raised $6,434 in just 10 (!!) days. While we can’t gather for a real walk this year, we can continue to support this severely under-funded, “invisible” disease.
On May 9th and 16th at 10:30am ET on Insta-Live, I’ll be hosting two 45-minute, donation-based Pilates classes with all proceeds going to the Lupus Foundation of America. You can follow me @bcoynes.
I hope you’ll join me on the mat, and that you’ll consider supporting Lupus, a chronically underfunded and underrepresented disease. If you can’t hit the mat, I hope you’ll consider donating anyway. Every donation counts, no matter the amount. The link is below and will also be in my Instagram bio.
There are so many worthy causes you could contribute to now. I also know that times are tough. Helping me spread awareness by sharing this post would also be a significant gesture of support. I am grateful for any and all of your support.
I have one more ask. Stay home. You’re staying home for someone like me. Someone with a compromised immune system. If it helps to put a face to it, Hi, here I am.
MY ORIGINAL POST FROM LAST YEAR
I don't post a lot of personal things on Facebook, but since being diagnosed with Lupus four years ago, I'm finally ready to share my story as I embark on organizing my first Lupus Walk on May 4th in New York City. I hope you’ll think about joining me (or at least read until the end of this lengthy post!).
Lupus is an autoimmune disease that causes the body's immune system to essentially attack itself. The disease affects about 5 million people around the world, with most being women. In my case, the diagnosis came after years of constantly getting sick, dealing with pesky dry spots on my face, and chronic, oftentimes debilitating, fatigue. I was actually thrilled when I was initially diagnosed. Finally I understood why I always felt, as I would describe it, a "general malaise." My truly wonderful rheumatologist at NYU literally started treatment on that day. Those spots on my face? The “butterfly rash,” a key indicator of Lupus.
While I was open with my extended family and very close friends about my diagnosis, I wasn't ready to talk more publicly about it. How do you explain a disease that's invisible? Especially when you look “healthy?” And if you can explain it to people, how do you make sure that they won't look at you differently? Or that they'll still trust you to show up at work the way you always have? Even as I write and post this, I worry about how people will react.
I’m fortunate: my Lupus doesn't give me joint pain, nor is it life threatening. And I have great medical care and coverage, seeing my doctor every three months to ensure all is under control. I have my family here in New York with me, and I have an incredible husband who has been on this journey with me since day one.
I think a lot about the women (and men) who have it worse than I do. As I switched onto my husband’s insurance and was without coverage for a few weeks, I was slightly panicky. Those few weeks were scary. I couldn’t fill my prescription without it costing a fortune. It put my privilege in check. What about the people who don’t have coverage? Or access to the best doctors? Or a family committed to helping them?
I'm generally pretty OK; there are just days when I know I need to pause. I won't lie, it hasn't been easy. Now, though, I feel ready to speak out, raise awareness and help fundraise. By going public, my hope is that someone who’s traveling the same road as I am, someone living with something “invisible,” will know that, no matter their struggle, they’re not alone.
Lupus doesn’t garner a fraction of the attention or funding as many other diseases. I’d love to have you join me on the walk – three miles around Battery Park. If not, please consider a donation to the Lupus Foundation of America. Every dollar raised goes directly to research.
If you have any questions, or just want to talk, feel free to DM me.
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