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My Slow and Steady Path Forward With an Invisible Disability

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Each morning, my fourth and fifth grade students began the school day writing in their journals, answering a prompt such as “What animal are you most like? Why?

Some of my kids described themselves as being quick like cheetahs, strong like bears, beautiful like peacocks, clever like foxes and smart like dolphins. It was interesting to note which characteristic they chose to write about, which of their strengths or quirks they chose to celebrate and highlight and pair up with an animal.

Lately, I find myself thinking about that prompt and wondering, “What animal am I most like?”

I don’t know. I can’t narrow it down to one animal that is most similar to the person I am on a daily basis. Maybe it’s because I feel like a slightly different version of myself each day, throughout the day.

Perhaps it’s just not realistic to define myself as one animal. Perhaps the closest I could get would be a slightly cartoonish, hodgepodge sort of animal, similar to the character Bing Bong in Pixar’s film “Inside Out.” Bing Bong was a mix of part elephant, part dolphin, part cat.

For instance, I often begin the day ready-to-go, eager to cross things off my to-do list like the crows outside, enthusiastically letting the world know they’re awake and the day has begun.

I tend to spend the middle part of the day like one of the many squirrels we see near our home, busy moving and getting things done. I may resemble a hummingbird, quietly flitting from flower to flower as I spend time in my garden, removing browned leaves and watering plants. And then as the day goes on, my speed decreases, my pain increases, and I move at a slower rate, more like a koala — doing what needs to be done for survival but certainly not winning any races while doing it.

I didn’t always see myself like those animals though. In my earlier years, it was much easier to find one animal I most identified with.

In my late teens, I would have told you I was a whale. Maybe there weren’t barnacles on me, but there were blemishes. But if you looked at me from a distance, you wouldn’t notice them (I hoped). I knew how to go the distance, to keep working to achieve a goal. I was strong, not often complaining about cramps or minor aches.  Like a whale, I was loyal to my family. I had a close pod — a small group of friends and family who knew the real me. Not just the straight-A girl at school, but the me who didn’t like tomatoes, who liked dancing in my bedroom and whose feet were terribly ticklish.

In my early 20s, I would have told you I began as a caterpillar who transformed into a butterfly. A young woman who found her wings, her independence, her career, her partner in life. I married, graduated from college and achieved my dream of becoming an elementary school teacher. I was soaring.

In my early 30s, I would have told you I was a mama bear, fiercely protective of my cub. I was on high alert at all times and super-aware of my surroundings. I was a new mommy and nothing was more important to me than the health, safety and well-being of my son.

But things changed. I changed. My health and my career are impacted by my autoimmune disease. So now, in my early 40s, I really don’t know what animal I am most like.

Maybe I’m like a tortoise — slow and steady, preferring to stay inside my shell. Keeping my true feelings — the anger, the hurt, the pain, the sadness – tucked away inside. Hiding, using my shell as protection, not putting myself out there.

On my good days, I can take pride in being a tortoise. They live long lives. They won the race — remember “The Tortoise and the Hare”?

On my not-so-good days, I look in the mirror and don’t see a respected tortoise but a lowly snail. Easily overlooked. Not warranting a second glance. Readily dismissed and ignored. Likely to get squished.

So much of how I feel is connected to what is happening with my body. And the ironic thing is you often can’t see either my pain or my feelings about it. I live with an invisible disability, a rare autoimmune disease called undifferentiated connective tissue disease that manifests itself as pain, fatigue and weakness in my legs.

Just by looking at me, you wouldn’t know there is a blue disabled parking placard in the glove compartment of my car. I look “fine.”

My family knows the signs. They’ll catch me instinctively rubbing my thigh, and though it doesn’t often help, it gives me the illusion that I’m doing something to help myself feel better. I bite my lips or purse my lips together during very painful episodes. I grimace — when I walk, when I sit and shift around in attempts of finding a more comfortable position, when I stand from a sitting position.

Maybe I’m an owl. An observer, and wiser now than I used to be. My disease stole my innocence in a sense. I always knew I could get sick — breast cancer runs in my family, for one thing. But that was a vague possibility, something in the future. Something I would receive treatment for. Something that, in one way or another, would go away.

This doesn’t. Ever. It flares up. It settles down. But it’s always there.

For a long time, I knew who I was and what I was doing in my life, with my life. I was working — toward a goal, something that was measurable. Maybe I was like a beaver. I knew the end goal and I was building my dam one stick at a time.

My students knew there were no wrong answers for their journals. The only way to do it wrong was not to do it. Yet I find myself harshly analyzing my own attempts to answer the prompt.

“Write in complete sentences. Be descriptive. Try your best,” I’d tell them.

We only spent the first 10 minutes or so on our morning journals. My students generally wrote a paragraph in response to the prompt. I told them not to spend all their time overthinking their answers, but to make sure they got something down on the paper.

So I will try.

“I’m a 43-year old woman who will always maintain that mama bear mentality even though my son is now 11 and becoming increasingly independent and self-sufficient. In a way, I’m like a peacock, but instead of beautiful feathers adorning me I wear silver jewelry and rings on eight of my 10 fingers. And I am a tortoise, slow but steady, going the distance, doing what needs to be done, tough.”

Getty image by Gabet Carlson.

Originally published: September 17, 2019
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