I Have Lupus & Ehlers-Danlos, & This Is What It's Like
Ever since Selena Gomez revealed she is living with Lupus, I've been inundated with questions from co-workers, acquaintances, and frenemies about my own health issues. Concerned friends asked if I was annoyed by the sudden influx of inquiries. It was quite the opposite, actually. I was beyond thrilled this illness — my illness — was getting some long overdue attention. I wondered how long it would be until someone tagged me or posted on my Facebook about it, and within hours of the Gomez story breaking, I had people reaching out to me.
The sudden interest left me with some mixed feelings. I loved that this was an opportunity to educate people about invisible illnesses and it was a relief to have a valid reason to bring this up. But it also felt oddly invasive. People with whom I had no tangible relationship, besides being a Facebook pseudo-friend, acted as though they deserved an answer to their probing questions solely because I had Lupus. Although I was grateful that Lupus had made it into the mainstream, I felt like most people still didn’t understand what it’s really like to live a life with chronic illness.
Not only do I live with Lupus, an autoimmune disorder, but I also have Ehlers-Danlos Syndrome (EDS), a connective tissue disorder; Mitral Valve Prolapse, a heart condition, which is accompanied by a murmur; and scoliosis. I like to think that I hit the jackpot when it comes to chronic, invisible illnesses. The two that impact me the most, though, are Lupus and EDS. Both can cause fatigue, joint pain, and mental fog, so it's hard to know which illness is causing which symptom most of the time. Oh, and neither have a cure.
Lupus is an autoimmune disorder. To put it simply, my body attacks itself, mistaking it for a foreign intruder like the flu virus, for instance. In my experience, there’s no rhyme or reason as to when, where, and how a flare-up happens. For some, Lupus picks a certain part of their body to hit, whereas others feel a more widespread effect. Mine has central nervous system involvement (seizures, vision problems, memory issues, etc.) and your standard joint pain, inflammation, and compromised immune system goodie bag. In short, I get sick easily, often, and even when I’m not traditionally ill, I’m usually still experiencing one or more symptoms that may not be visible.
Ehlers-Danlos Syndrome is an inherited connective tissue disorder. Pro? My go-to party trick is showing off my mad double-jointed skills. Cons? Things that shouldn’t stretch, do. I’ve dislocated my jaw in my sleep, bruise super easily, my wounds take forever to heal, and I can’t think of a joint that hasn’t slipped out of place at least once. At one point, I had to quit my job and go on bedrest because of my EDS. It also contributed to a ruptured uterine cyst as well as rib and hip dislocations throughout my pregnancy.
I always knew that if I were ever to have kids, my multiple chronic illnesses would play a major role. But, like most people before they become parents, I had no idea how difficult it was actually going to be. Even an average woman experiences exhaustion, pain, and is mentally drained during the first few months of parenthood. Add in Lupus, which thrives on an overly-stressed body, and EDS leaving me beyond weak, and I was a wreck. I had absolutely no clue how I was going to survive this, but I had to; it was my only option. My son hadn't even arrived yet, but I'd already made up my mind: I would buckle down and trudge on because he needed me.
But I can’t take care of my son if I let my body break.
Even though I hate it, I know my body’s limits and I know when to stop. As my son has gone from infant to toddler, I find myself missing out on larger and larger chunks of his life. I want to run around with him and chase him in the park like a “normal” mom. I’d give anything to hold him all night when he's sick without my shoulder blade giving out. I wish I could take him to every playdate and give him the social life he deserves. Above all, I dread the day when he asks me why I can’t do any of these things.
I deal with people judging my actions, or lack of thereof. Through the grapevine, I’ve heard that I’m lazy, a drama queen, I’m "faking it," and a slew of other insults. There was a time when I tried to track down every rumor and explain my conditions, but my energy is limited and these days I have more important things to spend it on. But there are still moments when I feel embarrassed for sitting on the sidelines and for not being as physically present as the other parents. I feel like there’s a neon sign pointing out my lack of participation. I wish I could just wear a shirt that says “I’m chronically ill, that’s why.”
Yet I’ve learned a valuable lesson. Those who truly care about me don’t need proof of the validity of my many illnesses. Anyone who wants to put you down or make you feel ashamed of something beyond your control doesn’t have your best interests at heart. Being a woman and a mom with Lupus and Ehlers-Danlos has shown me how I can conquer the impossible day after day, so long as it means I get to be there for my son.
Images: Courtesy of Sarah Bunton, Giphy (2)