Self Care with Thyroid Disease
Issue No. 5: Stressed Out!
Words - McKenzie Schwark
Illustration - Beyza Durmus
“ugh” by Beyza Durmus
A few months before I turned 21, a golf-ball sized tumor made itself at home in the base of my throat. It turned out the tumor had planted itself on my thyroid-- an organ I hadn’t even heard of until a dapper urgent care physician told me I had 24 hours to go get mine checked out by a specialist.
“Do not google anything,” he told me as he measured the lump protruding from my neck and handed me a signed referral.
In the quick six months between diagnosis and thyroidectomy, I prepared to graduate college. Between classes, internships, and improv class, I went in for blood draws, biopsies, and monitoring the obstruction in my airway. By the time the tumor was the size of a grapefruit, the whole thyroid had to go.
When you are sick and looking for answers, the internet can be a stressful and terrifying jungle to navigate. Suddenly, there are thousands of answers to questions you thought unanswerable, but it’s hard to know which ones are worth pursuing. Thyroid disease makes me tired and the internet certainly does not help.
A quick trip to the Instagram search bar shows that, for each of these diseases, there is an influencer using their page to offer solutions you wouldn’t necessarily get at the doctor’s office. Women have always turned to each other for answers to their health concerns that go unaddressed by modern medicine, so although this newfound wellness industry does not surprise me, it does overwhelm me.
I came across one thyroid disease influencer whose page was full of pictures of pastel pink blankets and screenshots of vegan recipes. I was considering a major dietary change and followed the page for suggestions. A few days later she documented a ‘typical day with thyroid disease’ on her stories. I was excited to tune in and see how someone was balancing work and life and self-care with hypothyroidism. In her first post she broke down her day hour by hour. The first three hours of the day were dedicated to ‘waking up slowly,’ which consisted of sitting on the couch under a blanket and catching up on TV. I was so put off I unfollowed immediately.
When I think of self-care, the first things that often come to mind are face masks and bubble baths. But self-care is about way more than taking some “me time.” Self-care is also about survival. When you have an invisible chronic illness, self-care goes far beyond sleeping in or splurging on wine.
When you’re sick, all that you want is an answer. The world opens up into a million forked roads. There are thousands of pages of Google results to sift through as you try to articulate into a search bar the pain in your joints, muscles, and head. Once one question is answered, ten more questions appear. It’s exhausting. And when your primary symptom is exhaustion, it starts to feel like a marathon that might not be worth running.
During a particularly bad flare up, I went to Facebook to see if I could find a support group. I found women whose selfies all featured the same puffy pink scar at the base of their throats, the same one I used to have calcium injected into to make it fade away. I started reading through the comments they had left on the wall of the group. They were asking for advice on generic versus name brand medication, and how others were coping with brain fog, hair loss, or exhaustion. Bizarrely, almost none of the posts had comments. Their concerns were left unanswered.
Navigating the healthcare system is also exhausting. For those that experience invisible illness, just trusting that you’re even sick is a struggle in itself. I had symptoms of thyroid disease long before I had the tumor. I was exhausted, dozing off on benches between classes, and napping every moment I wasn’t upright and mobile. I was waking up in pools of sweat. My mood and my sex drive were all over the place. But I was also in my junior year of college, and so everyone around me was exhausted and horny.
The symptoms of thyroid disease mirror the symptoms of many other diseases that primarily affect women and people with uteruses. Exhaustion, fatigue, unexplainable pain, hair loss, weight fluctuation, and mood swings show up on the symptoms list of other invisible illnesses like endometriosis and polycystic ovarian syndrome. They’re symptoms we’re often conditioned to ignore, or chalk up to menstruation. Left undiagnosed, thyroid disease can cause infertility, miscarriage, and cardiovascular disease. When we are taught to live with or ignore these symptoms it is impossible to get these invisible illnesses taken seriously. They are life altering, and they make everyday harder. We don’t need more influencers making our illnesses easy to look at; we need more real, honest support.
