Why I'm Sharing My Truth During Lupus Awareness Month

It’s another May so for most of you it means the days get longer, it’s time to renew your allergy medication and we switch from hot to iced coffee. For me and over 1.5 million Americans, it means Lupus Awareness Month. This is the time of year where we educate people, wear our purple and many of us take part in walks to raise money and awareness for this deadly, debilitating disease. Some of us take to social media and post a “fact a day” to educate our friends and others.

For those 31 days, lupus gets a tiny bit of the spotlight usually reserved for the “big diseases.” There may be public service announcements featuring celebrities. Fancy, expensive dinners are held in major cities that the average “lupie” could never attend. Purple ribbons are worn, banners are displayed, profile pictures are changed and then on June 1st it’s on to another cause.

But to me, and the other 1.5 million Americans who live with lupus, every day, every month, every year is Lupus Awareness. We have no choice but to be aware. In my house we joke that lupus is the fifth member of the family. The recalcitrant toddler in the corner, the monster under the bed, the thing that goes bump in the night, that houseguest that never leaves and wreaks havoc to your carefully laid plans. For people like me, we can never forget lupus because the moment you forget lupus, it will bite back and remind you in the ugliest of ways.

May of 2009, I had no idea it was Lupus Awareness Month. I’d certainly heard the word enough on the TV show “House” and when I first began exhibiting symptoms over a decade before, “lupus-like” and “pre-lupus” were bandied about but I didn’t meet enough of the 11 criteria to qualify. (I’d never felt so grateful to not qualify for something!)

You see, there is no one blood test for lupus, in order to be diagnosed you must meet at least four of the 11 criteria established by the Lupus Research Institute. I fell into this nebulous category of undifferentiated connective tissue disease – in other words, there’s something autoimmune going on but it doesn’t fall into any of the specific diseases. Unfortunately, while I was pregnant with my daughter in 2007, it was discovered that I have antiphospholipid syndrome – a clotting disorder associated with lupus (check!) and then in the summer of 2009 they found fluid around my heart – a pericardial effusion (check!) Suddenly I was at six out of the 11 and boy did I qualify and May would never be the same.

Fast forward to 2018. This is my ninth Lupus Awareness month. I will continue to share and educate. I will continue to wear my purple. I will continue to walk in the Walk with Us to Cure Lupus to raise money for the Lupus Research Alliance with my team, Panda’s Purple Posse. I will continue to raise awareness for a disease that is killing people every day yet most are completely unaware of.

I have lost too many friends to stop raising awareness. I’ve been fighting too long and survived too much to “be quiet” because it may annoy some people that I’m still talking about lupus. I’ve been advised by some well-meaning people close to me to “stop talking so much about lupus – people are tired of hearing about it.” (Um, it’s not like I stand and chat about it all the time.)

When my students chose lupus as a charity to raise money for several years in a row, another well-meaning confidant warned, “Aren’t people going to get jealous that your disease is getting so much attention?!” (Frankly, I was speechless and so hurt and paranoid after that one that I’m still uneasy about saying or doing things at work that are lupus-related.)

May of 2010 was my first real Lupus Awareness Month and now this is my ninth. I plan to channel as much as I can into my writing for The Mighty this month. This month I will share “my truth” of life with lupus. For these 31 days if you don’t want to read about it, please don’t. I don’t have the luxury of tuning it out. I wish I did, but I “qualified.” I wish next time it could have been for a big prize.