The Power of Scars When You Have an Invisible Illness

I was diagnosed with postural orthostatic tachycardia syndrome (POTS) in 2008, after 15 months of searching for the cause to my fatigue, weight loss, intense stomach pain, and extraterrestrial skin tone. (I’m not kidding — I was actually faintly green.) At that point, even the Mayo Clinic didn’t have a lot of info on POTS. My family and I were sent home with a three-fold brochure and instructions for me to eat more salt, more red meat, drink more water, and exercise.

Surprisingly enough, that actually worked for a while. I was still symptomatic, but I could function. POTS didn’t impede my ability to go to school or do chores or be a “normal” teenager. I still had to pay attention to my body, and I still had to be careful, but I was doing well enough that I rarely had to tell people I had an invisible illness. It was really, truly invisible.

You know there’s a big “but” coming, right?

In February of 2015, I was in a car accident. The vehicle I was in tipped over in a snowbank, leaving me dangling from my seatbelt. Nobody was injured, and the car wasn’t even scratched, but before I had managed to get my feet on solid ground, it was obvious something was wrong. I was shaking and crying — maybe not too unusual — but I got progressively worse as the evening wore on.

I was in college at the time, and like any college student, I had to meet with a group to work on a project. As I sat there waiting for my group members, I realized I could hardly turn the pages in my notebook. I could barely control my hands. I was exhausted. Nothing inside my body felt right or normal or good.

I called my mom.

My speech was slow and slurred. She made my cousin, a physical therapy major, come and check me for a concussion. I passed the test, but we were all still worried — so my mom contacted a friend of mine and asked her to come spend the night with me. I was grateful for the company — but more grateful for the help and the comfort that came with knowing that if something really bad happened to me, I wouldn’t be alone. We all expected me to feel better in the morning.

You know what happened next, don’t you?

I wasn’t better in the morning. I wasn’t better the next week. For the first time in my life, I, the nerdy straight-A student, started missing homework assignments. I had difficulty doing anything outside of classwork (let alone classwork itself), because I simply didn’t have the energy for it. I would lie down on benches and couches around campus, just trying to get enough energy to make it through the rest of the day and back to my apartment.

For the first time in a long time, I had to tell people about my invisible illness.

For the first time in a long time, it no longer seemed invisible.

At least, it didn’t seem invisible to me. But somehow it still managed to be invisible to most of the world. Apparently my random and mandatory naps sprawled across classroom chairs was not enough of a clue that I was really, really sick. And this seeming obliviousness travelled with me back to my hometown the following summer. My family saw that I was basically a zombie — but the rest of the world never caught on. My family watched my health deteriorate — but outsiders just wondered why I wasn’t going back to school.

No matter how many times I told people, “I’m sick”— no matter how many times I napped in public spaces — no matter how unnatural my skin tone looked — people didn’t get it. My illness was still invisible, no matter how painfully visible it felt to me.

 

Fast-forward to August of 2016. My health had been steadily going downhill, with my former intense stomach pain returning in a worse way. I was dropping weight fast and could hardly eat. My local doctors were running out of ideas, and in a last-ditch effort my GI ordered an ultrasound to check the blood flow around my stomach before, during, and after eating.

I was diagnosed with median arcuate ligament syndrome (MALS), a congenital anatomic anomaly that happens when the diaphragm is too low in the body, causing the median arcuate ligament to compress the celiac artery and a bundle of sympathetic nerves called the celiac ganglion.

The symptoms fit me perfectly — and they fit past-me perfectly, too. The fatigue, the pain after eating, the weight loss… It had likely been MALS all along, and we think dangling from my seatbelt had shifted things enough to exacerbate my symptoms until, finally, my only option was a very invasive and frightening surgery.

I’ll be honest: I was thrilled.

Having a diagnosis is great — but a diagnosis with an actual treatment option? That’s even greater.

I’m now five months post-op, with a pretty scar running down my abdomen. Mom and I flew out to Connecticut for surgery, and after I had been sliced and diced, I showed that scar to as many people as possible. I was so proud of it. Hey, nurse, wanna see my incision? Yo, random check-out lady at FYE, wanna know how I got this scar? No one was safe from my exuberance to show off my midriff. And when a friend came to visit me in the hospital, some of the first words out of my mouth were, “Wanna see it?”

This friend of mine — Aaron — was no stranger to hospital rooms. As a person with cerebral palsy, he spent a good portion of his childhood going through surgeries and recoveries and doctor visits and trips to the ER. None of my situation has freaked him out. In the past two years, I’ve talked with him more than I’ve talked with my closest college friends — because he gets it.

But for all the talking we’ve done, Aaron was still surprised by how excited I was to show him what I refer to as my “warrior wound,” and he was a little bit shocked that I showed it to some random lady at FYE. My willingness to simply lift up my shirt and flash people boggled him. And I thought that was kind of weird, because he has scars, too — but that’s when he told me he doesn’t want to show them to people. His scars stay covered. His scars stay secret.

And that’s when I realized a fundamental difference between the two of us.

I have always been invisible; Aaron has always been very, very visible. I have always had to explain my illness to people; people look at Aaron and just know — or think they know, anyway. Scars were the one thing Aaron could keep from the world; my scar is the one thing I can show the world. I look at my scar as a “proof of illness,” a thing to show those who doubted or questioned the reality of my condition; Aaron doesn’t need this proof — he is the proof.

For me, having an illness like POTS or MALS, I can look in the mirror and see it. I see the weird skin tone that’s not quite human. I see the tired eyes, windows to a brain that’s too foggy to really know what’s going on. I see the ribs that are evidence of the weight I have unintentionally (and frighteningly) lost. I see the purple fingers and toes, the outward evidence of poor circulation. There’s a lot about these invisible illnesses that are all too visible to me — and even more that’s visible to my family, who can compare what they see now to the healthy me they used to know.

But the rest of the world can’t see all this — because the rest of the world doesn’t look closely enough. People tell me, “You look good!” and I want to shout, “No, I don’t!” because I know it’s not true. Part of me gives them grace — they don’t know me well enough to realize my eyes are always prepared for a random nap. Another part of me just thinks they’re really oblivious — after all, people aren’t supposed to be green. A final part of me realizes that mostly they’re just being polite and probably don’t even mean it.

Aaron doesn’t get this kind of treatment, though. As far as I’m aware, people don’t tell him, “You look good!” because Aaron is obvious. His cerebral palsy is not a sneaky thing. People look at him and see his bright blue walker and immediately recognize that he has a disability — for better or for worse.

And so we come back to our scars. I have one: a thin line down the center of my abdomen, which was outwardly sealed with glue to create the prettiest incision I’ve ever seen (though I may be biased). Aaron has more than one scar. But I don’t know how many. I don’t know what they look like. And for the most part, I’m not even sure where they are — because he keeps them covered. He doesn’t go flashing random people at FYE. Before I started writing this piece, I asked him if it would be OK for me to write about his scars, because I understand how important this privacy is to him. I’m glad he said yes.

It’s a strange and wonderful thing to me that, even though we have vastly different conditions, Aaron and I still have a lot in common. We’re both Christians, we both have an affinity for superheroes and J.R.R. Tolkien, we are both deeply connected to our “inner child” even while living in “old” bodies — and yet we’re still different, and we can question and challenge each other through those differences. He helps me grow and adds new insight to my perspectives — I like to think I do the same for him. And, in the same way, there are threads that tie all sorts of people together because their lives share a common theme: illness. Yet that theme contains so much that it would be silly to think all people with illnesses or disabilities share the same opinions on things like…you know…scars. Those differences in opinion are just as personal as the scars our minds and bodies bear, but they enable us to learn from each other — they challenge us to think more deeply and grow in ways we hadn’t imagined. I love my scar and I hope it never fades, but more than that, I hope to keep learning and growing from the scars of those around me.

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