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When Your Body Rebels With Chronic Illness

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Rebellious body.

That’s what my soul lives in.

A body that is rebelling against itself. Over and over. A body that is punishing me. A body that isn’t following the rules. The rules I followed all my life — get enough sleep, drink water, limit alcohol, don’t smoke, exercise, eat a varied diet.

I did all that, and still I wound up with a rebellious body.

Generally I hear rebellious, and I think positive attributes like strength and bravery. Rebels who fought against Nazi Germany. The Rebel Alliance fighting against The Empire. Being rebellious can be a good thing. It means you don’t settle for the status quo. You make a change, and you force the change if need be.

But what about when the rebellious aspect is my body? And when my body rebels it hurts. It limits my physical movements, it impacts my energy and mood. Because I live with an autoimmune disease: a medical disorder, that by definition, means my body is attacking itself.

The diagnosis is undifferentiated connective tissue disease (UCTD). It’s a rare autoimmune disease that has overlapping symptoms of lupus, rheumatoid arthritis, and myositis. It’s a bit of all those and yet none of those. After living with this condition for more than a decade, I’ve decided UCTD is just a fancy way of saying doctors aren’t entirely sure what’s going on in my body, what’s causing it, and how to make it stop.

When it comes to autoimmune diseases you treat the symptoms. You can’t ever make the disease disappear, but you can sometimes force it into remission. Except that hasn’t happened for me. And each time I’m in a flare, a particularly bad stretch of pain and inflammation, it’s a guessing game. Try this muscle relaxer. Increase your pain pill dosage. Have you tried massage? Acupuncture? Yoga?

But that’s the thing about my rebellious body. It’s not always logical. Increased pain and sensitivity in my left leg may not translate into an increased reading on the inflammation marker in my lab work. And regardless of what the number says, my leg hurts.

Sometimes my leg throbs and the pain lingers, the kind of pain that stays with you after you walk into the side of the dining room table. It hurts, it’s there, but you can function.

Sometimes my leg feels tight and constricted, the feeling you get at the doctor’s office when the in-take nurse fastens the blood pressure cuff around your arm and it starts tightening. Except the tightness in my leg doesn’t ease up in a minute or so. It just continues to feel tight, and I’m forced to sit at my desk and pull up my pant leg so the fabric of my wide-leg pants doesn’t touch my calf.

Other times my leg twitches. Or it cramps. It’s heavy as if I’m one of those power walkers in the neighborhood, tight stretchy pants on their legs, arms swinging, and weights wrapped around the lower legs/ankles. These speed walkers place one foot in front of the other with purpose and passion. I have invisible weights, but mine feel like shackles, designed to hold me back, slow me down, impede my progress.

You would think I would have this figured out by now. Figured out how to be me — a wife, a mom, a writer who only became a writer because I had to retire from my teaching career because of my invisible disability. But I haven’t figured it out. There is no manual, no cheat sheet, no YouTube video to watch to give me the summary I need, the way my son watches a YouTube video to review the section of “The Odyssey” he read for his English class.

I’m making it up as I go along. Engaged in a fight, trying to rebel against this body of mine that is different now. Will always be different.

If I allowed you to photograph the front of my naked body you would see a slightly jiggly round stomach. You would see stretch marks (stripes my son called them when he was young) that have decided to stick around permanently, even though my son is now 14 and taller than my 5’6.” And I’m OK with all that. Those body changes are the result of my pregnancy, and the result of my pregnancy is my son.

But there are changes to my body that have nothing to do with my life decisions. Changes that were forced upon me and that have permanently marked my body, such as the two scars on the upper portion of my left calf, the result of muscle biopsies (inconclusive results both times).

Rebelling means fighting against, refusing to accept what is, and choosing another path. I’ve been trying to do that, but it hasn’t been successful. I try to keep being me. And so even after I became ill — when my son was 2, and even after receiving my diagnosis — when my son was 3 — I kept doing what I always did. Working — I was an elementary school teacher. Walking — to Coffee Bean, with my son in his stroller and some Cheerios on the little tray in front of him. Visiting — the aquarium, the botanical garden, the Natural History Museum. Except my body struggles to keep up with what my head and my heart want to do.

My body isn’t done rebelling. For many years, pain, fatigue, and weakness were limited to my left calf. (Doctors, in many different specialties, told me how unusual it was to only have one side of my body affected.) But now, that has changed too. Now the pain, the fatigue, the weakness has spread to my left thigh as well. My left leg often feels completely different than my right leg. Heavier, as if I’m standing unevenly, with my left foot sunk in some quicksand.

I have asked my rheumatologists what the progression of this pain means long-term. Will it continue traveling up, maybe venturing to my left arm next? Will it instead switch and add into the equation my right leg? No one knows. No predictions can be made because many autoimmune diseases are rebellious like that. Proud to be difficult to diagnose, challenging to treat, surprising, and unexpected in their progression.

And that’s when I sometimes run into more trouble. My husband, son, and I have timed tickets to visit the butterfly pavilion at the Natural History Museum. The tickets were reserved about a week ago. But the morning of our outing, I wake up and it’s hard to swing my left leg out of bed. Harder still to stand up, my knee creaking and generally fighting my attempt to straighten out my leg. My calf looks slightly swollen. My thigh feels sensitive to the touch — when I pull down my pajama pants, the elastic waistband hurts as it skims down my side.

But we have museum tickets. My body is rebelling against our plan for our family outing. It wants to stay home, spend some time on the back patio reading, sitting at the dining table for a family game of Uno, sinking onto the couch to watch some highlights from last night’s basketball game featuring our favorite team (the Los Angeles Clippers).

And yet we have these nonrefundable tickets. We have been talking about this outing for a while. We have plans to go. I want to go. I don’t want to be the party pooper. And so I rebel against my rebelling body. I get dressed and brush my hair, securing the strands with a clip on either side. And after we have eaten breakfast, and grabbed our water bottles, we head to the museum.

There are several ways of looking at this. Possibly, my outing intensified my pain. Perhaps my pain was worsened, making me hurt more and for a longer period of time. Or, maybe being somewhere pleasant, like a butterfly pavilion, with two of my favorite people on the planet, will make my heart happy, and that might dial down the pain meter a tiny bit. Or, my leg was already hurting. A day of rest may not have necessarily eased it (my autoimmune disease continues to rebel in that way, rest does not always equal less pain), and if I was already hurting, at least now I’d be hurting because I had done something pleasurable.

Rebellious bodies don’t lend themselves to easy answers. Rebellious bodies are not always very likable.

But I’m working on it. Because rebellious or not, it’s my body.

Originally published: April 15, 2024
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