I have been tired since 2015. I was tired throughout my pregnancy, I was tired after giving birth, I was tired for the 14 months that my son didn’t sleep through the night. I was tired going to grad school, I was tired when I started my business, I was tired when I graduated, I was tired when I started my job, and for the two years I worked at that job, and since I left that job. I’ve been tired in every stage of my life for the past 4 years, and although fatigue is expected with most of these things, I owe the severity of that fatigue to an autoimmune disease.
In 2016 I was diagnosed with Hashimoto’s Thyroiditis – an autoimmune disease that causes your immune system to damage your thyroid – and I’ve been tired ever since. In case you’ve never heard of it, Hashimoto’s the most common cause of hypothyroidism. Symptoms include fatigue (obviously), weight gain (SON OF A BITCH), dry skin (check), puffy face (double check), joint stiffness or pain (mine is in my feet), muscle weakness (ugh), hair loss (apologies to my shower drain), and depression (*cries*). Some also experience constipation, increased sensitivity to cold, brittle nails, and prolonged or excessive menstrual bleeding.
I talk about anxiety much more often than I talk about Hashimoto’s – mostly because anxiety has been a constant companion for most of my life and affects every aspect of my life – but that doesn’t make my chronic illness any less real. And it feels especially real today.
Just like with any chronic illness, some days are worse than others. When my thyroid levels are stable, I have energy. I get shit done. I can go about my day and do laundry and cook and write and paint and communicate and be a mom and wife. Luckily since I got on medication, these days make up the majority of my time.
But every once in a while, for some reason unknown to me, something shifts and I lose every ounce of energy I’ve ever had. I don’t even remember a time that I had energy and I can’t fathom ever having energy again. I’m so fatigued I actually feel sick. Everything hurts, everything is stiff, and I feel like I’m moving through water. Even getting up to go to the bathroom is a chore. I feel like crying, but I’m too tired to cry. I’m in a fog, and I have to take a break after just holding my head up for a few minutes.
If you live with a chronic illness, you know what I’m talking about. Everything hurts, everything takes effort, everything is just too much.
If you don’t live with a chronic illness, the best way I can explain it is that it’s the worst hangover you’ve ever had. But on steroids. There is no tired like chronic illness tired.
The symptoms obviously suck, but the main reason I hate it because I feel so much shame. I know intellectually that I have a chronic illness and that my symptoms are very real, but since it’s an invisible illness, I feel like such a failure when I try to describe how I feel to anyone. I feel lazy and like I’m making excuses and like it’s all in my head. I feel like if I’m not doing anything, I’m not worth anything. How do I explain that I am so tired all I can do is lay on the couch without sounding like a lazy piece of human garbage? How do I describe that this kind of tired far surpasses any other kind of tired I have ever felt?
How do I allow myself to rest and give myself permission to do absolutely nothing without heaping shame over my own head?
I feel like I’m pretty good at giving myself grace when it comes to my mental health, but giving myself grace with autoimmune disease fatigue is something I just haven’t achieved yet. I suppose it’s something I’ll have to work on. Maybe when I have more energy.
I wrote the majority of this post yesterday and had to take a break between paragraphs to rest. Today is better, thank God. I have more energy, and I’m able to look at this aspect of my life with more clarity and grace. I’m not my illness and I’m not defined by my fatigue. Then again, it’s much easier to have this perspective when I’m not exhausted.
Sarah Wilson has both anxiety and Hashimoto’s, so she’s my Australian author soul-sister. In her book, First, We Make the Beast Beautiful, she writes:
“In essence it totally blows apart everything tight-fisted, adrenal A-types like me define ourselves by. It attacks our vanity, our pride, our emotional buttressing.
But Hashimoto’s also serves a very important function. It stops us when we can’t do it ourselves. It’s like our bodies step in and say to us, “Well, if you won’t stop, I will. And I’ll collapse right here, in the middle of everything and prevent you from going any further down this path until you get a grip on yourself.”
Resting and relaxing and recharging does not take away my worth. It doesn’t make me a bad mom or wife or friend or person. It makes me human. Some days that’s all I can ask of myself, and that’s okay.