Living with an invisible chronic disease

I have an autoimmune disease called Hashimoto’s disease – sometimes also called Hashimoto’s thyroiditis or Hashi’s. Or just “the Moto”, as in “I got the Moto” (OK that last one is probably just me…).

Hashimoto’s disease, if left unchecked, gradually destroys the thyroid gland, a butterfly-shaped organ located in the front of the neck under the Adam’s apple. The thyroid is an endocrine gland that produces thyroid hormones, which in turn regulate your entire metabolism. Your thyroid also impacts all sorts of other things, like sleep, mood, libido, and menstrual cycles, as well as cardiovascular functions that govern the strength and rate of your heart beat. So yeah, it can be kind of a biggie if your thyroid is on the fritz.

If your thyroid makes too much hormone, that’s hyperthyroidism. If it doesn’t make enough, that’s hypothyroidism. Hashimoto’s primarily produces hypothyroid symptoms, but just to keep things interesting, you can also flip over to hyperthyroid symptoms as your thyroid gland slowly dies. The thyroid to me is a Goldilocks organ – everything has to be just right for it to function properly.

Photo Credit: xulescu_g Flickr via Compfight cc

I’ve been debating whether or not to write about this publicly for some time now. I tend to be a private person, thus my reluctance. Plus there’s a part of me that feels like it’s self-indulgent to say I have a chronic autoimmune disease since that sounds so serious and dramatic. But there’s another part of me that recognizes that it’s rather ridiculous to feel this way because it happens to be true.

To be sure, there are a lot of other worse AI diseases out there, like celiac, lupus, diabetes, rheumatoid arthritis, MS, and many more. In fact, there are more than 100 AI diseases, though many of them are fairly rare. Here’s an important tidbit to know: if you have an AI disease, you are at a higher risk of developing other AI disease(s).

While my AI disease isn’t nearly as bad as some other types, it does impact me in all sorts of ways. Most of those ways are invisible to other people because I’ve become adept at hiding them via coping strategies and humor.

For me, my main symptoms are excessive fatigue, feeling cold, brain fog, difficulty concentrating, stomach upset, dry and cracked skin on my hands and feet, hair loss, thinning eyebrows (especially that outer 1/3), and apathy/low mood. And to keep things exciting, I often get hives too – bad enough to have prescription hydrocortisone cream and a ready supply of antihistamine meds (aka benadryl). Super fun! (note: I use sarcasm frequently…)

A quick word about brain fog. This is a pretty benign way to describe feeling like a complete idiot or perhaps like you have early onset dementia. It can be something like having zero recollection of an event/conversation, forgetting words (including words you use regularly), and being absent-minded to the point where it negatively impacts you (let me tell you about the time earlier this year when I came *this close* to putting diesel fuel in my non-diesel car…).

In many ways, I have a steel-trap memory and I like to think I have a larger-than-average vocabulary so it’s particularly worrisome to me to struggle to recall simple words sometimes or have a black hole in my short term memory.

I decided to write about my experiences out of hope that it may help someone else but also as an exercise for me. I recently experienced a pretty bad flare-up of symptoms and realized that I’ve been pretty unkind to myself when that happens – like I get annoyed with myself for being “lazy” or “stupid” when it’s not me, it’s this disease. That’s something I need to work on for myself.

I plan to write some future posts about Hashimoto’s but for now, I’ll close  with this:

No matter what health issue you may be struggling with, you must be your own advocate. To do this, you must educate yourself and take charge of your own well-being.

It’s time-consuming and it frankly pisses me off, but doctors are busy and they are only human. Even the best ones aren’t as invested in your health are you are since it’s your health.

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