The Coolest Hands Around

Written by Ella Mastroianni

Photographed by Emilie Dumas

The butterfly-shaped organ in my neck has got it all wrong. That’s what the doctor told me—that my butterfly flew in the wrong direction, did a few too many spins, and got stuck in a high up bough. In theory, I like my butterfly for her rebellion. In practice, I feel differently.

The first thing you learn about the thyroid is that it’s butterfly shaped. The second is that it’s responsible for practically everything in your body. I have Hashimoto's disease, which is an autoimmune disorder—a butterfly on a rebellious flight. Every metaphorical wing flap can result in rashes sprouting or my face puffing, but most of the disease is invisible to everybody but me. My favorite offender? Being freezing cold all the time.

I have hypothyroidism caused by Hashimoto’s, meaning that my butterfly is “underperforming.” She’s me during a 4th grade math test, and I feel for her despite the hell she puts me through. My parents joke that I’m cold blooded. Touch my hands—go on, I dare you. You’ll agree once you do. It wasn’t until recently that I understood my ice pop hands were my butterfly’s doing.

I’m sure this is what Elsa from Frozen feels like. Like her, I sit with gloves on as I do homework, eat dinner, and watch movies. Although, my coldness cannot freeze anyone's heart, which is a plus.

That’s not to say no superpowers come with having cold hands. Exhibit A: After my mother says I’m “being dramatic” for wanting to turn the heat up, I sneak up behind her and place my hands on the back of her neck. She yelps and slaps my hands away, exclaiming “Ugh Ella!” But that’s the sound of triumph, brought on by cold hard evidence! She begrudgingly says I can put the heat up one degree. Point, Ella!

My family members are the ones who deal with my excessive showers or when I sneakily turn up the thermostat. I’ve been blamed for many water and electric bills over the years, but how do you explain how cold you are when everyone disagrees? I feel ridiculous. After all the blankets, including the heated blankets bought just for me, what else can I say?

My cold hands have even caused arguments about heating with my roommates. I want to say “I’m sorry, I’m trying,” and “Can’t you see I wore two layers of pants today?” But any rebuttal feels pathetic. I want to be able to shut up and deal with it, so mostly I do.

People say, “you can only take off so many layers when you’re warm, but you can use endless layers when you’re cold.” However, it’s not always practical, and it’s too simplistic. If I have on three sweaters, two pairs of pants, fuzzy socks and slippers, and I’m still cold, what do I do? I like the argument, but living with Hashimoto’s makes it less straightforward. It makes everything that should be straightforward, less so.

Cold hands shroud everything with anxiety. I’m trying to be kinder to myself and not ask questions like “Who wants to hold a cold hand?” and “Will it get worse when I’m older?” Questions like these make me feel isolated. Having Hashimoto’s creates a separation between me and others. My questions that are meant to be silly, aren’t entirely jokes. I fear that people who get close to me will be bothered, because I’ve listened to complaints for years. I feel silly talking about what I need, especially when it's an inconvenience to other people. The only way I can be understood is if I do a Freaky Friday body swap. I can’t do that, but I can try talking more openly about what I struggle with day-to-day.

My butterfly will always be fluttering around, and at this point, it’d freak me out if my hands were suddenly warm. I will always live with this disease, and it makes some things difficult, but I’m lucky that I got diagnosed early (and at all). While I’m scared of rejection or being misunderstood because of my chronic illness, I have to believe that someone will care to listen and not brush me off.

I can take a page out of my butterfly’s book—be rebellious, by talking about this, and trying to embrace her. My disease is less invisible now because I’m sharing, so why keep hating the butterfly in my neck for the way she is? Why be cold to myself? I know my hands have already got me covered for that.