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What It’s Like to Live in the Grip of Graves’ Disease

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Graves’ disease is an immune system disorder of the thyroid gland in the throat. I was diagnosed with Graves’ disease a few months after having a baby. The symptoms are numerous and life-changing, and just getting through the day is an achievement. It can be hard to explain an illness to friends or loved ones, so here’s a glimpse inside my reality in the hope it might help others.

My Graves’ disease symptoms have a vice-like grip.

I’m faint and holding onto walls to help me walk around the house.

I am so weak I can’t lift the baby carrier more than twice in a day. On some days, I can’t lift it at all.

A friend drops off grocery items like bananas and chocolate on her way home when I can’t make it out of the house. I need it more often than I ask, but I’m grateful for her home deliveries.

Holding my hands out in front of me, I check for shakes. Yes, both hands are still shaky.

My hands on the rail pull me up the stairs, like I’ve got a rope and a mountain to climb. In my own way, I do.

I count down the day in two-hour periods, asking myself, “What can I do to get through the next two hours using as little energy as possible?” The days pass by like I’m carrying a grand piano on my back, wading through a sea of peanut butter.

It’s hard for me to maintain my weight. I’m light and getting lighter. I’m hungry and getting hungrier. I wake in the night to eat but still, no change.

I never blow out my hair anymore. I’ve an intolerance to heat. Even on the lowest setting, a hairdryer makes the skin on my ears and scalp feel on fire. I don’t have enough energy to wash my hair very often so it doesn’t really matter. I let my hair go curly, wavy or frizzy — there’s not much I have control over now. So much hair has fallen out that I wear baseball caps to cover the bald patch.

I’m so depressed. Is this my life now?

My tears fall fast and often.

My eye bags have bags, and those bags have packed their own carry-on, and those carry-on bags have packed their own oversized tote bags.

Eyes. What a sore subject. They’re physically sore due to gelatin putting pressure on them, making them bulge, but I also mean they’re emotionally sore. They’re puffy, baggy and protruding. The specialist tells me they’re uneven. That’s plain to see.

You know that mom who only posts photos of her child? That’s me. I don’t like any photos of my face anymore; it hurts me to look at them so I delete all of them.

Digestion troubles block me from going to new places, even small trips like a local street parade or fire station open house. I need to know where the closest restroom is at all times.

I’m anxious. I don’t want to drive on any freeways. I don’t want to go to any playdates or parties. I don’t have energy for chit-chat.

I’m always hot and sweaty.

Insomnia. I. Am. So. Tired. So, why can’t I get to sleep?

My resting heart rate is over 100 bpm. It should be in the 70s or the 60s, but mine climbs even when I’m still.

Brain fog. Mind muddle. It’s so hard to concentrate on people’s conversations.

I have rage now! Lots of it. It’s known as Graves’ rage. I don’t know who I am anymore.

I used to teach children, play competitive volleyball and have to-do lists that were achieved every day, but not anymore. Now I alternate feeling like a monster with feeling like a wreck.

Graves’ takes away the control you have over your body and your life. Then it takes away other things like your sanity, your joy, your ability to think clearly, your personality and maybe your job or relationship. But Graves’ disease gives you things too, like compassion for other people living with illness, true empathy for others struggling with anxiety, depression or mental illness, and it’s given me direction — to only spend my time and energy wisely.

As I hold the table to walk closer to the kitchen bench, which helps me get to the fridge, I know this is the grip that Graves’ disease has over me. But this is not me.

This disease is not who I am. I am more than my symptoms. I’m a mom, a friend, a sister, a writer and a fighter… and my mind grabs onto that thought to get me through the next two hours.

Image via Pxhere.

Originally published: April 10, 2019
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