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Why I Can't 'Wear My Scar' With Pride

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I read somewhere that everyone goes through life with scars of some kind. Most of these scars are hidden from plain view. They are the scars we bear from past hurts, past disappointments, past abuses. I read that some people look at their physical scars as badges of honor, visual representations of their survival, and “wear” their scars with a certain amount of pride.

I’m not one of those people.

My scar was the result of a muscle biopsy.  Like many autoimmune diseases, mine wasn’t easily diagnosed. I spent over a year meeting with a vascular surgeon, a rheumatologist, a neurologist, a geneticist, and an ophthalmologist. (I learned that certain forms of cancer show up in a patient’s eyes). I gave blood samples and urine samples, had an electrocardiogram and a motor nerve conduction test. Doctors used X-Rays, ultrasounds, CT scans, and MRIs to look into my leg. All the tests showed something wasn’t quite right, but no one knew what it was. One doctor referred to me as a “medical mystery.”

I didn’t want to be a mystery. I wanted answers. I wanted to find out what was wrong and what we could do to make it better. In my mind, things were bad. If my “mystery illness” wasn’t apparent to all these doctors after all these tests, then it must be something awful. Something rare. Something life-threatening.

One rheumatologist told me that the tests did show us what it wasn’t. I didn’t have cancer, leukemia, or multiple sclerosis. She said the only thing left to do was to test a sample of my muscle.

At the pre-op appointment, the surgeon informed my husband and me that the muscle biopsy was a relatively routine outpatient procedure. A small slice of muscle from my left calf would be removed for testing. I’d be discharged shortly after the procedure, and would most likely be sore and uncomfortable, but would be up and walking, almost right away. I’m inclined to say the surgeon lied, because that’s not the way it worked for me.  Still, to give him the benefit of the doubt, instead I’ll say the surgeon wasn’t entirely forthcoming.

I didn’t walk out of surgery. I was wheeled out. When we got home, and I collapsed on the couch, I found my bandage was soaked through with blood. Pain pills didn’t help lessen my discomfort. For about five days, I couldn’t walk without the aid of a walker.

At the post-op appointment, I expressed my concerns to the surgeon, my worry that something wasn’t right since I still wasn’t fully recovered. The doctor told me I didn’t need to be alarmed, that it wasn’t uncommon for some patients to take weeks to fully recover. After all, he said, a chunk of my muscle had been removed.

As a writer, words matter. In my mind, there’s a substantial difference between a “slice” and a “chunk.” I was now experiencing more difficulty walking, not just because of my constant pain, but because a “chunk” of my muscle was missing. After all that, the biopsy didn’t help reveal a specific diagnosis. Abnormalities and inflammation were confirmed, yet doctors still couldn’t explain why. I felt angry and betrayed, as if I had willingly given my body over for use as a science experiment, and the experiment wasn’t done properly — additional pain, additional difficulty walking. And now this scar. All for nothing.

I regard my scar with fear. I see it as a visual representation that doctors don’t have all the answers. It reminds me that my body is confusing and complex, and that it doesn’t always work in a nice, neat cause-and-effect type way, the way you expect a lifetime of smoking to lead to lung cancer.

I choose to hide my scar, because I don’t like the way it looks. It’s actually even easier to hide my disability, which I also do. Except for medication-related weight changes, I don’t look any different than I ever did.

To my neighbors, I appear to be a hands-on, physically active mom. I’m often outside with my 9-year-old son, Ryan, playing handball, tossing a Frisbee, or riding our bikes.

However, my neighbors don’t see what happens when I go inside. They don’t see me biting my lip, blinking back tears, and popping a pain pill that will take at least a few hours before I feel any relief.

My disability manifests itself as pain, fatigue, and weakness in my legs, and because it is hidden, I can go through my days trying to pretend like it’s not there. Even though others can’t see it, my disability is always there.

Just like my scar.  Just like my fear.

In the summer, it’s a bit harder to hide my scar. It’s on the back of my left leg, the upper area of my calf, near a cluster of red, blue, and purple veins that seem to crisscross each other like a freeway interchange. So, I keep the area covered. I no longer own shorts, and I won’t wear skirts that stop above my knee.

When my son was younger, and we were in a fitting room together, he once stared at my leg as I tried on jeans.

“Why do you have all those veins?” he asked.

“I’ve always had a lot of veins there. But over the years, it seems like I’ve gotten more,” I told him.

“And it’s right near your scar,” he said.

Ryan knows that when he was younger, not quite 3, doctors took a piece of muscle from my leg to try and figure out why my leg was hurting. Ryan knows doctors used microscopes to try and get a closer look at my muscle. To him, it’s a bit disgusting, and a bit fascinating.

For him, the scar is something tangible. It’s something he can see and examine with his magnifying glass. It’s completely different from the pain he knows I’m usually in, when I tell him I need to sit down because my leg hurts. Then, there’s nothing for him to see — no bruise, no swelling, just this interior, invisible, interminable pain.

Not until 10 months after the biopsy would another rheumatologist give me the name for my “mystery illness.” We began treatment, but I still didn’t realize that my life would never be the same.

Now, seven years after it all began, I can acknowledge my truth.

I am disabled, though I don’t sit in a wheelchair and I don’t rely on a cane or a walker.

I am disabled though all my senses are fully functioning.

I am disabled, because I suffer from undifferentiated connective tissue disease, an autoimmune disease.

I am an “undercover” disabled woman, with a hidden internal disability and a hidden external scar.

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Getty Images photo via openeyed11

Originally published: January 26, 2018
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