“It’s a chronic thing.”
These four words slip past my lips with ease like a reflexive defense mechanism. Attempting to summarize years of anguish to a person I’ve just met meant protecting them as much as myself.
How do I explain to them that my body never feels 100% healthy? That I’m wearing a wrist brace today because I woke up, and my wrist would not bend more than a centimeter back and forth? That I threw up for three hours straight because my body just does that sometimes?
Even saying “I have lupus” doesn’t explain everything. Lupus looks different for everyone and attacks everyone’s bodies differently. Mine is actually considered to be fairly “well-managed” in comparison to others. I mean, I have no kidney involvement (knock on wood); my meds are at a low dose and are able to keep my day-to-day life manageable for the most part; and I’m OK.
Except, my hair is falling out, and I don’t know why. I’m dizzy more often than not these days, vestibular migraines altering my balance. I wake up nauseous and go to sleep with a headache. I can’t rely on food the way I should. I’ve consumed as much Pedialyte as a baby in the last month to make sure I stay hydrated when my body rejects anything else. And I’m exhausted. All the time.
More often than not, I’m consumed by intense brain fog, unable to concentrate or focus on anything for long periods of time — or any period of time. When the sun breaks through the fog, I try to use up every last second of clarity, often overworking myself and being drained the next day. My productivity levels are linked to my health, and both swing like parallel pendulums.
Sometimes I just want to break down. Why is this happening to me? Why can’t my body just function properly? It’s a spiral I try to avoid because I can’t change it. I can’t do anything other than take care of myself and make the best decisions for myself that I can with what I have.
Not to mention, lupus is often invisible. I don’t look sick. I’m privileged to say that I can move through the world as an able-bodied person because no one would look at me and see anything visibly wrong.
So I created a crutch: “It’s a chronic thing.” That’s all anyone really needs to know. I don’t want to burden someone with a long spiel about how my body was destroying my own red blood cells to the point of near death. How kidney involvement becomes less likely after five years past diagnosis and that it’ll be three this fall, and I count the days till it’s five even though it isn’t a guarantee. How I no longer trust my own judgment. How I hate the body I’ve been given some days even though it’s the only home I will ever know completely.
When I nearly died in 2019, I almost collapsed in a parking lot. I told my dad I just needed a nap and I’d be fine, but he drove me to urgent care anyways. If he hadn’t, I don’t know what would have happened. I didn’t listen to my body then — how can I trust myself to do the right thing now?
Something I remember from the pediatric intensive care unit is a doctor showing me my red blood cells under a microscope. Other doctors drew diagrams on a whiteboard to explain what was happening to me. I don’t think the gravity of my situation ever hit me while I was there or in the months following. I don’t think I let it hit me.
I separated myself from my illness, creating a wall between myself and becoming “the sick person” at school. But what I realized was that I was isolating myself from a community of people who were going through similar things. I wasn’t using my voice to show people what it can really mean to be chronically ill. I still don’t think that lupus makes me who I am. But it’s always there. It’s part of me, and that just can’t be summed up in a single sentence.
Because, while lupus sends me spiraling and has affected the course of my life, I have great days. Days when all I want to do is lay outside in the sun and listen to music because, despite being sick, I feel great, and I relish in the moments when I feel alive. Days when I get to do things because I’m sick, such as going to the Walk to End Lupus and advocating for myself and other people with chronic illnesses.
Lupus has affected my life. It runs a thread through everything I do — the good, the bad and the ugly. So yes, it’s easier to say “it’s a chronic thing” because it’s a small truth concealing an entire lifetime.
It’s a chronic thing. It’s a me thing. It’s everything.