Looking Pretty, Feeling Shitty: a lupus story.
After nearly a decade of being really sick with approximately 7 million (loose estimate) very different, very weird symptoms, I was finally diagnosed with lupus last year. My specialist suspects that I've had it since I was about 14 years old.
Sidenote: In case you are wondering, lupus is a disease and is not a type of flower or a type of werewolf. I know, werewolves sound way cooler than some boring disease.
When Jeremie asked me to be on Sickboy I knew I wanted to do it. Not just to talk about lupus, but also to discuss how hard it can be to get that diagnosis and to get treatment when you have an autoimmune disease. It takes on average 6-7 years for someone to find out they have lupus, which is a disease that can lead to severe arthritis, seizures, kidney failure, stroke, heart attacks, lung issues and countless other problems.
When I was first told about lupus by a doctor I didn't really know anything about it except that Howie D. from the Backstreet Boys lost a sister to the disease (I read it in one of those Chicken Soup books in junior high). But you might know a bit about lupus because it's been in the news lately. Selena Gomez was recently diagnosed and revealed to the media that she underwent chemotherapy as part of her treatment. I've been lucky enough to avoid chemo so far but am very aware of the fact that it could become a reality for me at any point.
I probably didn't mention any of these facts during my conversation with Jeremie, Brian and Jenna because I'm way better at writing than being able to carry on real life conversations, and also because lupus affects so many aspects of my life that it's honestly hard to remember everything. It's not a topic that lends itself to an easy, linear narrative because it's a messy, often times confusing disease.
Put simply, lupus is a bitch. It completely changed my life and put me in a position I never expected to be in. I went from being a ball of energy who ran for fun and not just because I was being chased, to the zombie version of that. I sleep a lot more now, and wake up every morning wondering if my legs will work that day or if maybe it will be the day my lungs decide to shit the proverbial bed again. Don't go playing a tiny violin for me though, some days I feel pretty damn good. But that fluctuation of having periods of feeling great interspersed with periods of feeling like crap tends to make me wonder what crazy surprise is in store for me next. It's kind of like a really awful version of Jack in the Box. I know something scary is coming, I'm just never really sure when it will pop out, make me sick, and then laugh maniacally at me just to rub it in further.
I'd say the hardest part about living with lupus is that it's quite invisible. I look fine (okay I look great, I was just being modest). Most of the time there are no visible signs unless I need help from a cane because my leg muscles suck or if I develop the lovely butterfly rash on my face. Because of that, most people don't realize that I'm actually pretty sick and I'm not just a lazy person who gets a thrill out of cancelling plans last minute. I don't look like someone with a disability, which is sometimes a good thing and sometimes a bad thing. Lupus doesn't fit nicely into a box and that makes it something really hard for people to comprehend. Even with celebs like Selena Gomez and Lady Gaga shedding light on what lupus is, there is still a very real stigma around the disease which often leaves those of us with it feeling like society is invalidating our experience. Sometimes I just want to take society by the hand and tell it to stop being a bully.
I'm thankful to Sickboy for letting me lend my voice to this important conversation. I know it will take a lot of effort to erase the stigma around invisible illness, but this podcast is a great place to start. You guys are so inspiring ;)
Listen to Lisa's episode HERE!