15 Feb Thyroid Chronicles: Things I’ve Learned After Twenty Years of Struggle
I have been living with thyroid disease since I was seventeen.
At seventeen I’d never even heard of the thyroid, but here I found myself possessing one that was diseased.
Leading up to that diagnosis was an overall sense that I had become a shell of a person. I was negative, resentful, and angry all the time. Angry at everyone. It went beyond the regular teenage angst that most people assumed I was dealing with. There was something intrinsically wrong with me and I knew it.
I remember being relieved at having a diagnosis, an answer that could explain all that I had been feeling, and yet shocked by the severity of the word disease. I remember going home and informing my family as such, but once they learned that all I needed to do was take a daily pill, everything seemed to be okay. This was generally the sentiment that I was left with between family and doctors alike; take my pill and everything will be fine.
I lived with this impression for the better part of a decade. I was tired all the time, overwhelmingly tired, but neither I nor anyone else linked this back to my thyroid since I was already being treated. Instead, everyone, including myself, simply grew tired of my complaining about how tired I was. I went from being an excellent student with definitive plans to an okay student with a lot of uncertainty. My mind was hazy by day and would speed up at night, I developed insomnia as a result. I had painful leg cramps that would also keep me up and seriously diminished my quality of life. I searched for answers and explanations and always found none.
Year after year I would go for my blood test, my TSH (thyroid-stimulating hormone, the test most doctors use to determine thyroid health) was measured, and my dosage would remain the same. It hadn’t occurred to me that things could be different until I was in my late twenties, living in a different city and had sought out a new endocrinologist. When I explained my symptoms and my TSH was tested, it was decided that my dosage should be adjusted. I began to feel better, clearer, and I had more energy than I had had in a long while. I began to catch glimpses of the self I remembered being before all of this thyroid business had entered my life.
What empowered me most during this time was that I had finally learned to read the numbers. The spectrum of “normal” on a TSH test is so wide that what may be technically normal on a piece of paper may not feel normal at all to the person whose cells are being counted. I learned what normal actually was for my body and I grasped on to that number with everything I had.
Once again years passed in this way; me, my daily pill and my yearly blood test. I fell in love, got married, bought a home. I got pregnant and my dosage was adjusted to accommodate the added squeeze on my hormones. Nine months after my daughter was born I was pregnant again, and again my dosage was adjusted. My life was full of blessings and while this should have been the best of times, it wasn’t. Little did I understand how taxing pregnancy would be on my thyroid.
Having kids is hard, having two so close together was very hard, and being a mother is exhausting. But what I was dealing with went beyond that. I became the same shell of a person I had been at seventeen. I had very little patience for anyone or anything. It didn’t take much for my emerging toddler to set me off. I was so resentful and yet I didn’t understand why. My insomnia returned, along with the leg cramping. My fatigue was painful and I was again unable to think clearly and perceptibly, like the worst possible case of mommy brain, all day long and every day. My TSH was up and down like a yo-yo. I developed a myriad of odd symptoms with no obvious root cause: carpal tunnel in my non-dominant hand, skin pigmentations, nausea at random, spotting that lasted for half a year, consecutive miscarriages, to name a few. Each time my symptoms were treated for what they were, but each time I would only get better once my thyroid was addressed.
It has now been twenty years since my initial diagnosis, and five years since I began the loving, chaotic, wondrous, and hormone-altering journey of motherhood, and I’ve finally come to understand a few things.
First, nobody that doesn’t have a thyroid disorder understands what it’s like to have a thyroid disorder. People will generally consider the thyroid an irrelevant little gland. It isn’t. People will generally assume that it only takes a daily little pill to fix everything. It doesn’t. The thyroid affects everything. I mean it, everything. And as hormones are constantly in flux there is no one blanket solution, but rather a daily, weekly, and monthly struggle to find ways to feel good. I believe that the single greatest frustration of anyone who has been dealing with this disease over an extended period of time is how little people understand, and how much is assumed.
Second, I’ve come to understand that I have to be my own best advocate. I know when I feel good, and I know when I don’t, and I know that if I don’t I need to do something about it. That could mean requesting another blood test, or increasing my physical activity, or adding supplements to my diet like iodine and selenium, or seeking out ways to boost my hormone health such as acupuncture. I’ve learned through many starts and stops that yoga and meditation can calm a racing mind and curb insomnia. I’ve learned that open communication is healthier for me than keeping feelings bottled up, and so I push myself to communicate, because my emotional health is intricately connected to my physical health, and because there is no better way to advocate for my thyroid than to speak my mind.
Lastly, and most importantly, I have learned that good health is a choice of consciousness. The single greatest change I can make for myself is a change of mindset, a decision to be healthy, a resolve to be better than my disease. It was only once I was able to make this mental shift that the other pieces fell into place.