But You Don’t Look Sick: Living with Transverse Myelitis #VentSesh

I don’t look sick.

In fact, I am proud to say I look really healthy.

You’d never know that I’m often in some level of pain. In fact, you might look at me and think she’s for sure exaggerating. I promise you that I — like others living with a chronic invisible illness — am not.

But You Don’t Look Sick: Living with Transverse Myelitis:

I have transverse myelitis, a one-in-a-million neurological disorder characterized by inflammation of my spinal cord. Turns out, that the spinal cord operates pretty important stuff in our bodies. 😉

I’ve been lucky in the sense that I’ve had a largely huge recovery. When you see me, you would never know that eight years ago I was paralyzed from the chest down, with doctors uncertain if I’d walk again. When I was admitted to the hospital with a four-month-old at home, I couldn’t even hold a pen.

A year later, I looked better. Except, like so many others with chronic conditions, I still have plenty of “stuff” below the surface.

It’s not like we have a cast on, are in a wheel chair or have a physical indicator that we’re not feeling well. Someone with MS, an auto-immune disease, Lyme disease, chronic migraines, depression, etc, all have varying levels of pain not externally visible.

Thinking of my former self, I can imagine it’s virtually impossible for a healthy person to understand.

Or for me to explain.

It’s just that how do you explain to someone who’s healthy inside and out that even the most basic day of someone with a chronic illness is nothing like theirs? 

Then it clicked.

Someone in the transverse myelitis Facebook group I recently joined shared the “spoon theory,” by Christine Miserandino. If you know someone with a chronic or invisible illness, this read is so worth five minutes of your time.

As I started reading, I felt eight years of feelings burst inside me.

This.

This is how I feel every day. I don’t vocalize it. I don’t like to give power to it.  And I never had such a helpful way to explain it.

I started hysterically crying. It was an incredible “a-ha!” combination of comfort and understanding.

The spoon theory basically explains how anyone with a disability or chronic illness has a reduced amount of energy available for any sort of activity and task. If you start with 12 spoons today, how do you use them? Shower, take a spoon. Get breakfast ready for the kids, take a spoon away. Run an errand, take a spoon. And, while you can sometimes borrow a spoon from tomorrow, you’ll eventually run out. Yup, I get it.

As incredibly grateful as I feel to have family and friends support me, I can’t expect them to fully get my daily life.

Honestly, it’s only been in recent years that I’ve fully understood that the lack of understanding — for my rare diagnosis and that I’ve been fighting against having a disorder since it was invisible to everyone — made me feel compelled to “show up” even when I candidly didn’t have the strength to be standing.

I’ve been lucky along this journey to now have four friends who I love like sisters who also deal with invisible illnesses. Only one has transverse myelitis but we get each other in a way we have each discussed others simply cannot. They’re fiercely strong, beautiful, driven, inspiring women who fuel me and get me in a powerful way. I’m eternally grateful they’re in my life.

So, I’m writing this because I think we can all benefit from making the invisible visible.

You see my face and you see a healthy person.

(Thankfully you also see a happy person… because I am!)

You don’t get that my feet and legs are constantly tingling, that my feet can’t tell the difference between extreme hot and cold (lovely for pedicures!), that my back can feel like it’s burning from the inside and I can have intense exhaustion that I wish was the level of a regular working mom. And, that doesn’t even include my bladder that doesn’t work at all and requires me to use a catheter to empty.  I know where every single bathroom is wherever I go or wherever I am traveling. The bathroom situation alone at Disney and concerts and art festivals and green markets gives me intense anxiety.

Please know that I’m not writing this for pity in any capacity.

This diagnosis has interestingly given me so much; I have an incredible level of compassion, strength and willingness to fight for myself, for self care, to think less about what others think about me, and to know I’m capable of anything. It’s reminded me about what’s important in life, and the type of people I will surround myself with.

While I’m definitely not looking to be the poster child for the “invisible illness crew” (are we a thing?! ha!), we could all use a reminder — me included — that people have stuff.

And, that kindness, compassion and a little extra patience are always a good decision.

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