On Instagram and Facebook, it looked like the perfect Friday afternoon. My husband, Nathan, and I had both taken the day off. We ate lunch at a BBQ joint in Brooklyn, then headed to an ax-throwing spot close by, as it's become somewhat of a tradition to try something new for my birthday, which was coming up the following week. The videos I posted showed each of us sinking an ax into the centre of the target. In a photo, we held each other close, smiling happily, both dressed in flannel.
What you didn't see on social media [1] is how weak my arms became midway through our reservation, the ax now slamming off the target and falling to the ground. Or how much I fussed with my hair before taking that photo, hoping to hide the weight I had gained in my face [2]. Or how heavy my legs felt by the time we had trekked back to Manhattan.
The next day, I laid in bed until almost 1 p.m. I was awake, as always, but I simply didn't have the strength to get up. When I finally did emerge from my bedroom, I felt as though I was walking in slow motion, the way you would in the shallow end of a pool.
You see, when I was just a few years out of college, I was diagnosed with Hashimoto's thyroiditis, a disease in which the immune system attacks the thyroid [4]. It often leads to hypothyroidism, the medical term for an underactive thyroid. Because I was so young at the time, and my thyroid levels were "normal," I went through four doctors [5] before finding someone who would treat me. By then, every Saturday was like the one I just described. It was as if I pushed myself all week, then utterly collapsed the moment the weekend arrived. I still regret that I lost so much of my 20s to this disease before a doctor confirmed what I already knew: that thyroid hormone levels are a sliding scale, and what feels normal for some doesn't at all for others.
I've never spoken about the disease on social media, even though it's as much a presence in my life as anything else.
When I'm medicated, I feel better, but my thyroid always seems to be on the decline. Even Nathan can tell when it's time to adjust my dosage. I shed a lot. I grow irritable and sad. Sometimes my period is late. Those symptoms had begun cropping up months before that day date in Brooklyn, but because I had changed jobs and insurances, I decided to wait it out in order to book an appointment with an endocrinologist closer to my apartment. Then, days before I was scheduled to be seen, the office called to cancel, explaining that my previous doctor had failed to send over my records. I pleaded for them to make an exception — I was out of refills on my prescription — but they declined. The next appointment was four weeks away, and I knew how much worse I'd feel by then.
I'm not a particularly private person. Many of my friends and coworkers know that I have this disease, if for no other reason than to explain why I'm always so cold, a symptom that just never seems to fade away. But I've never spoken about it on social media, even though it's as much a presence in my life as anything else. As I laid in bed that Saturday, reading the comments on my posts from the day before, I felt something I had never experienced before: guilt.
There's a lot of criticism of social media. As helpful as it is in bringing people together, the tendency to present only a curated, filtered version of our lives [6] can be isolating for those who feel that their reality is somehow lacking. I remember the pangs of jealousy and grief I felt when I was untreated and every other 20-something I knew seemed to be thriving. Living with a chronic illness is already lonely — so, for the sake of anyone who's waging a battle of their own, I'm going to try to be more honest about what my life is actually like. Because I feel betrayed by my body, too.