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How to Explain Lupus to People With Functioning Immune Systems

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A question I get asked a dizzying amount is, “But what is lupus, Lisa?” Followed sometimes by “and how does it affect you?” It’s not like I go around wearing a sandwich board that says “Ask me about my lupus today,” but I am often in social situations where someone hears that I have lupus, they know I write about it, or I have to take out a giant bag of pills because it’s one of three pill times during the day and people notice these things. I also get a lot of emails asking me to explain the disease. Honestly, I probably get asked these questions as much or more than I get asked, “Will that be eat in or take out?” which I can promise you is a lot.

When I was first diagnosed with lupus I didn’t really know how to explain it to others. I kind of wanted to carry around a set of those little dinky cars in my pocket so when someone inevitably said, “Oh, you have lupus? What is lupus?” I could just take the dinky cars out of my pocket and enact some sort of minuscule car crash with a bunch of flips and a car ending up in a ditch and then maybe depending on how I was feeling at a particular moment I would then use a Bic lighter to light that car on fire. But that’s not always practical, because some of my dresses don’t have pockets and some people don’t appreciate me lighting toys on fire on their coffee tables. So I’ve become better at using my words to explain what lupus is, what it does to me, and how it makes me feel. And I guess I should share those words with you, the internet, in hopes that more people will understand at a quicker rate so I can go back to not having to explain it in person so often.

What is lupus?

Lupus is a systemic autoimmune disease. What does that mean exactly? It means that my immune system randomly decides to attack my body because hey, why not? Some weird switch went off that made my immune system mix up its signals. Now it thinks that healthy parts of my body are foreign invaders that are trying to kill me. So my lungs could just be hanging out doing their normal breathing thing and my immune system will wake up from a nap and be all like, “What the hell is this thing? Why is it so big and how did it get in here?! We must kill it!” And I’m like, “No please, you’re being super irrational right now. Let’s just sit down and talk this through. This is called a lung and it is meant to be there to keep me alive.” But my immune system won’t have any of it. It shushes me like I’m a naïve child and starts punching the crap out of my lungs. Thinks it’s for my own good. And when it’s finished doing that it turns around and sees my stomach and goes, “OK, holy shit! I swear that wasn’t here the last time we looked! What is happening?! We need to kill this, too! Kill it with acid or something!” And I tell it to calm down and just breathe but it’s too worked up at this point. It just wants to beat the life out of everything. And when I say everything I really do mean everything. Systemic means whole body. You name it and my immune system will randomly try to kill it with fire.

My immune system is so busy hulking out on the good parts of my body that it has no time or energy to stop the bad stuff from getting in, which gives me a thousand infections. And I use medications like steroids to knock it down a peg and remind it what it’s supposed to be destroying and what it isn’t. And that works for a little while and I have some good days. But my immune system has the memory of a goldfish, so out of nowhere it will turn around, see a healthy organ, and freak out all over again.

I guess my immune system is kind of like the Avengers. It tries really hard to protect the world and we all know it means well, but usually by the end of the fight everything is reduced to rubble and a lot of innocent people have had cars thrown at them. OK, maybe that metaphor doesn’t translate perfectly. But you get the point. It’s a shit show.

What causes lupus?

Beats me.

No seriously, scientists haven’t really figured that one out yet. We’ll be living on the moon soon but our immune systems are still a complete mystery. They know something has triggered this weird autoimmune response in lupus patients but they don’t know exactly what. Could be genetic. Could be environmental. Could be magic. Could be all three. I am in no way a professional scientist but I honestly think my lupus stems from a really bad bout of scarlet fever I had when I was in grade nine. My immune system has never been the same since then. But again, not a scientist, so don’t go writing in a medical journal that scarlet fever causes lupus. I just know I’ve felt pretty sick ever since then. Yay!

What is the hardest part of having lupus, Lisa?

For me, I think the hardest part of having lupus is the fact that I look really healthy on the outside so it’s hard for people to understand just how sick it can make me.

Lupus is considered an invisible illness. Which means that while the Avengers are destroying New York City inside of my body, I probably look perfectly fine on the outside. Some might even say beautiful. Those “some” would probably be me and my mom. Having a disease with its own built-in invisibility cloak can make it pretty challenging for people to believe you are as sick as you actually are. And even though I would be the first person to tell you to stop giving a crap what other people think of you, it can be really hard to be called lazy or to worry that your employer assumes you’re just a slacker if you call in sick. A disease like lupus forces you to spend a lot of time in your head wondering how you are perceived by the outside world.

For example, after having to take a break from working due to an awful flare-up, whenever I took a picture of myself smiling or out in public looking like I was having a good time, I always hesitated before sharing it on social media. I know that when someone sees these pictures they will just assume that I’m healthy and faking it, because society seems to have this perception that if you are sick you have to be sick every moment of every day. You can’t have fun and be sick. You can’t smile and be sick. You can’t have any color in your cheeks (it’s called blush, people) and still be sick. And society says that to me so often that I actually have days when I wake up feeling OK-ish and then immediately feel guilty for not being at work. Even though I know that the reason I feel at all like a functioning human being is because I have been resting.

I know that I’m really sick. I know that lupus is really hard on me and that I’m always tired and in pain. I know that I spend way too many nights sleeping in the emergency room hooked up to an iv of morphine to try to keep me from vomiting for just a few hours. Yet if I have half a day of feeling decent, I worry that someone will find out and point at me and say “faker!” It’s a really weird place to be. I hesitate before hitting the share buttons on those photos of me living my life, but then I upload them anyway, because I remind myself that I am sick and will be sick every day for the rest of my life, regardless of whether or not I’m in bed or out to see a movie with my boyfriend. But I wish I didn’t have to hesitate at all. I wish I didn’t have to keep hearing over and over again all the well-meaning people saying, “Oh, but you don’t look sick.”

So, that’s what lupus means to me. 

So that’s lupus, in a nutshell. I never know how it’s really going to affect me, and it causes more than just physical problems. When you have a rather strange, unpredictable illness, it affects way more than just your immune system. It affects your mood, your mental health, your ability to be social and carry on normal friendships and relationships, your career, your finances, and how you see yourself as a member of society. Lupus is a lot of things. It’s really confusing, often scary, and almost always misunderstood. So thanks for reading this far and taking a few minutes to better understand how lupus affects those of us who live with it. And sorry for all of the Avengers metaphors.

This blog was originally published on Damsel in a Dress

Thinkstock photo by rvika

Originally published: March 2, 2017
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