For the past 16 years, I have always been very private about my diagnoses with people I know in real life. I shared them sparingly, with only a few select people. Why? Mostly because I was scared.
I was scared that ...
... they wouldn't be able to / want to handle the accommodations that I needed
... they would get frustrated with my limitations.
... they would ignore my illnesses altogether.
... they wouldn't believe me.
... they would only see is my illnesses.
... and more.
Did that happen with everyone I told? No. But it did happen with just enough people to reinforce my fear.
With the exception of a few close friends, most of my chronic illness community existed only on Twitter for the past 10+ years. A few months ago, I started a separate Instagram account for Ollie. All of sudden, I had another space to share about my lupus. Very few people that I knew in the real world followed Ollie, so it felt like a safe space.
Then the End Lupus walk came up, and I realized that it was difficult to raise awareness (let alone donations) if I wasn't going to talk to most of the people I knew. So I did something I hadn't done in the 16+ years since my original diagnosis. I made a post on my personal Instagram and my personal Facebook page. I revealed my diagnoses to just about everyone I know. It was terrifying.
But you know what? PEOPLE SHOWED UP. I definitely got some messages from people going "wait what?!" Some asked questions to learn more. Then they donated to the cause. Others didn't ask or say anything, they just quietly donated and moved on. Even a high school bully unexpectedly made a donation. Plus.. so many amazing friends I made on Instagram who have never even met me made donations, which was absolutely incredible.
More than the funds though, this has opened a door. What was once impossible is now feasible: the possibility of educating and raising awareness throughout my social circles. That's what made it worth it.
It's still scary. I'm still holding my breath, because I still think there could be some fallout. But at least now I know that I can share without being attacked or questioned. It seems like such a small thing.. but after 16 years of fear, it's incredibly freeing. The thing is, people can't show up if they don't know you need them to show up. I assumed they couldn't handle it, so I didn't tell them... and because I didn't tell them, they couldn't prove otherwise. By sharing, I gave them a chance to show that they can, and that gives me hope. At the end of the day, I decided awareness was important to me than privacy right now.
“I never understood why Clark Kent was so hell bent on keeping Lois Lane in the dark.” ― Audrey Niffenegger, The Time Traveler's Wife