Today is World Lupus Day. The Lupus Research Institute tweeted to wear Orange today to raise awareness. I’ve never heard of Orange before. Every ribbon or wristband or poster I’ve seen has always been Purple. Where did Orange come from? I’m confused. I read somewhere it was a NY thing. Well I’m in NY (upstate, but still the state), so I wore Orange AND Purple.
I’ve mentioned before how my nickname is Lupie. And in college with my health problems it was so hard to hide my Lupus. I only told one person at Syracuse (besides professors) about my Lupus because I didn’t want to be known as the sick girl. We did a ton of stories together and we put on newscasts together, all of this required a lot of teamwork and I didn’t want my classmates to look down on me thinking my health would prevent me from doing my stories. I’ve debated long and hard about being public with my Lupus in the working world. Television News is a brutal business, especially now, and I could be fired for “not being able to perform the physical aspects of the job.” If I’m too sick or having a flare, or even just a weak day I can’t carry the 30 pound camera on my shoulder to get my highlights. But, I’ve decided that I need to address my illness head on, in all aspects of my life. That means being proactive with my health, and being an activist.
Lupus isn’t well known and it’s a confusing illness. When I tell people I have Lupus I’d say about 98% of them ask “What’s that?” While I’m no celebrity, I have a public job. You can see me on TV five nights a week, and most TV News personalities get involved in the community (usually it’s contractually required). So what better way than to be an activist for my own cause. If I’m open about my Lupus as a TV personality, I can do more for the cause than if I hide it.
So I tweeted to remind people to wear Orange (and Purple) for World Lupus Day. I posted on my Facebook, and have continued to post Lupus facts. And then out of nowhere, the boy wore his orange and blue tie today. He mentioned my tweet and said he would for me. I thought maybe he’d forget and he definitely didn’t have to (I don’t expect anything from a boyfriend in regards to my illness, since usually they can’t deal with it. So another reason I kept it to myself). He put on his tie this morning no big deal! I don’t know if anyone asked him why he was wearing orange or if he said anything but just doing it and being sincere about it meant the world to me.
This entire day has proven that people don’t look down on me because I have Lupus (maybe they do but I haven’t met them). I don’t have to hide anymore and it’s actually better when I don’t.