Thyroid Disease: The Struggle is Real


If you were to ask a group of people living with a thyroid disorder about their biggest frustration, I think their answer would unanimously be the feeling that no one is listening.

The exhaustion would be up there on the list, the “just not myself”-ness as well, but I don’t think anything compares with the knowledge that nobody gets it, and the feeling of being alone, even helpless, while your everyday life and well-being are at stake. Having a thyroid disorder can lead to a very solitary existence.

Back in my early twenties I took a workshop to learn more about children with autism. The instructors wanted us to feel what it was like to be in the mind and body of an autistic person and so did the following exercise. As we all stood in a completely blackened room, unable to see our own noses, they played the radio, ripped paper, feather-dusted our skin, spoke aloud, spritzed us with water, spritzed scents in the air and waved a hairdryer around. The intention was for us to experience a complete sensory overload—and it completely worked. I don’t know what it’s like to have autism, but in those few minutes my ability to understand autistic people expanded immensely. One could say I became empathetic in a way I hadn’t been before.

I wish I could create such a demonstration for the family and friends of those living with thyroid disease, as well as the doctors these patients turn to for help, that would accurately provide a first-hand experience of what it’s like to have your thyroid be out of sync. Obviously this would be unethical, but if I could create a demonstration for the purpose of this empathetic exchange, I would have to recreate the fatigue of prolonged insomnia and muscle weakness, a racing heart, a decrease in mind function, an inability to control hair loss and weight gain, an inability to control mood and emotions, an increase in anxiety or depression, sexual dysfunction, intolerances to either cold or heat, and the list goes on. At its essence, I would need to recreate a sense of being out of control of body and mind and self at all times, and tack on the sense of solitude one gets when being ignored. I don’t assume that many people would willingly sign up for such an exercise.

So how do we expand empathy and understanding when this is what is needed? Here are some ideas:

* Be curious about the symptoms, ask questions, try to understand what the person is feeling.

* Listen. Don’t ignore or turn away. Pay attention.

* Don’t assume or compare. One person’s tired is not the same as another person’s fatigue.

* Read books. There are several that offer eye-opening accounts on how the thyroid affects lives.

* Recognize, even if and when you can’t understand, that the person before you is feeling out of control, needs help, and ultimately just wants to feel themself.

The reason I focus so much on empathy is because of another common misconception (read, frustration) involving the thyroid: that a little daily pill fixes everything. The truth is, it doesn’t. We aren’t talking about a common cold, we’re talking about hormones. Hormones affect every aspect of our physical and emotional selves, and the thyroid produces the mother of all hormones. Treating thyroid replacement medication like it’s a multivitamin doesn’t really make much sense.

It takes from months to years to find the right medication and dosage. Even then this dosage can be temporary as women’s bodies age and change, as stress factors change, and as other hormonal developments such as those brought on by pregnancy and menopause compound with the already taxed thyroid. Our bodies are constantly in flux, and our ability to maintain a sweet spot in hormonal balance becomes more like a dance, a constant flow of actions and choices geared at optimizing health. The thing is, it’s better when you’re not dancing alone. What I’m saying is, there is no pat answer or pat dosage, no one-size-fits-all solution to feeling good. The sooner this is recognized, the sooner we can get down to the business of helping people to feel good.

In decades past, a woman living with an undiagnosed thyroid disorder would likely have been considered clinically depressed or bi-polar, even institutionalized as a result. We’ve come a long way since then but we have a long way to go still. If I were to turn this into a call to action, it would be a call to put away the blank stares. It would be a call to treat women’s hormones as a whole, since they affect the whole. It would be a call to listen rather than ignore. We have a duty to improve the lives of others. As a friend or partner this may mean showing patience and compassion. As a professional, this may mean doing more to ensure a patient feels “themself.” The minimum isn’t enough.

Lastly, if you are the one struggling with a thyroid disorder, remember that the onus is on you to secure the above. Demand empathy, demand listening, and demand good health. Help others to understand because without help they won’t. The worst decision a person can make for themselves is to use this illness as a crutch. Release the crutch, decide to be better. When no one else is listening, listen to yourself.

Published by mtg

A woman. A mother. A wife. A writer. This is me.

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