Lupus. Systemic Lupus Erythematosus. SLE.
If you’ve been reading my blog entries, you know that I’m a Lupus Warrior, but do you know what that means? Do you know what Lupus is? I’ve written about how I manage it, but most people don’t have any idea what it is, what it is, and what it can do to me, or to anyone living with it.
First of all, in layman’s terms, Lupus is a disorder of the immune system. In a healthy person, your immune system is your best line of defense against a virus or an infection. It’s a pretty neat thing. It just kind of hangs out in your body until you need it. When you get a virus, for example, your immune system says, “Wait, what the hell is this? This isn’t supposed to be here!” It cranks up and those white blood cells go to work to chase that shit out of your body. When you get a cold or the flu, you feel like crap for a few days while your immune system does its job. Hopefully, whatever bug you’ve contracted is weak enough that your body can just drop kick it out, but sometimes you need antibiotics or other medical intervention to speed it along and not make you suffer too long. It’s really cool that your body knows what to do with foreign invaders. A little chicken soup, a bunch of vitamin C and echinacea to boost that immune system up, and a healthy person should be up and at ’em again pretty quickly.
Well, I’ve never been normal, but I’d give up most of my fun quirks that make me unique if I could have a normal ass immune system. In a person with Lupus (or other autoimmune disorder), our immune systems are confused assholes who cannot tell a cold or a flu from normal healthy tissue. Your immune system says, “Hey, look, a kidney! Let’s protect that!” Mine looks at my kidney and can say, “Fuck yeah! Dinner!” and attack it. You may have heard that Selena Gomez, who is not only pretty and talented like me, but also has Lupus like me, just had a kidney transplant. This is serious shit.
People with Lupus take immunosuppressant drugs regularly to weaken our immune systems. I’m lucky so far in that with a proper diet and a healthy lifestyle, I get by with taking only one mild immunosuppressant, but that leaves me very susceptible to any kind of gunk that’s going around. Most of my mom friends stock up on Vitamin C and other immune system boosters when their kids get sick, in the hopes that they won’t catch it too. I can’t do that. Since my immune system is already working overtime since it shouldn’t, we don’t want to give it any extra ammo. My best defense is to rest and cross my fingers and bargain with the universe to just let this be a cold. Just let this be a flu. I have a much higher chance of a cold or flu turning into a serious sinus infection, or bronchitis, or pneumonia, or something even more serious. In fact, many people are moved further towards the diagnosis of autoimmune disorder when downing Emergen-C makes them worse.
When I tell you to cancel our plans if you or your children have minor illnesses, it’s not because I’m feeling overdramatic. It’s because your cold could become my cold, and that cold could easily turn into a hospitalization because of a nasty turn. When I tell you that I’m under the weather and need to rest, it’s because I’m trying to protect myself from being out of commission (since I’m in sales that’s literal and figurative) for weeks. I’m not avoiding you, I’m not trying to stay home with my dogs and read a book instead of what we were going to do (OK so I admit that the dogs and books are really the only perks here.)
There’s self care for the body and self care for the mind, and preventing Lupus flares is both. It’s really my first priority in my life, because like I’ve said, when I go down, everything around me goes down with me.
Have questions? ASK THEM. I’m clearly not shy. In fact, it kind of pisses me off that people who are rather close to me know I have Lupus and they don’t do so much as a cursory google to figure out what I’m dealing with. Lupus isn’t what I call a “Casserole Disease.” It knocks us out for weeks at a time or longer, but since we don’t get scary skeletally thin or lose our hair or anything, and in fact, LOOK FINE, people assume we are fine. In fact, the thing many autoimmune patients report hating the most is the refrain, “BUT YOU LOOK GREAT!” Like, sorry that I’m pretty and you can’t tell by looking at me that what I am telling you about a well documented disease is doing to my entire body, but it’s a true story. Nobody asks if they can come by and bring a meal or run an errand for us. Almost nobody asks me how I’m feeling unless I bring it up. Obviously I don’t want to be treated like I’m fragile, but maybe an ounce of compassion would be cool.
Selfish Mitch, who thinks people could at least spend a 4 minutes on Google before they pretend to know my life.