Why I'm Breaking the Silence of Living With Autoimmune Disease

Not many people have heard of it. Not many people can even pronounce it. Yet Hashimoto’s disease is the most common cause of hypothyroidism, and according to the American Association of Clinical Endocrinologists, a baffling 14 million people have it in the United States alone. If 4.4 percent of the people in America are suffering from Hashimoto’s, why aren’t we talking about it?

In my opinion, it’s because it’s a “silent” disease. Like many other autoimmune diseases, Hashimoto’s affects you in such a way that you may not “look” sick. You may only seem to others like you are having a bad day, or haven’t gotten a good night of sleep. People are oblivious to the fact that you actually slept for 12 hours last night, woke up late and missed a doctor’s appointment and haven’t eaten a meal in two days because you have no appetite. Why is it so difficult to do normal activities, to make it through a work day, or have a conversation with a friend? Why? What is this disease actually doing to you?

Hashimoto’s is an autoimmune condition where the body’s immune cells literally attack the healthy cells in the thyroid, causing inflammation and impairing the thyroid’s ability to make thyroid hormone, thus causing hypothyroidism. The thyroid is such a crucial organ for a healthy body, and when it doesn’t work properly it can cause an array of symptoms that affect everyday life. With autoimmune diseases in general, pretty much your entire body is affected since your immune system is interconnected in everything.

Not the best news for someone with multiple autoimmune diseases.

I was recently diagnosed with Hashimoto’s in February of 2016 after years of a rollercoaster of health problems. Growing up, I was sort of a problem child when it came to my health. If there was a bug going around, I got it — bad. If there was a weird and totally random skin or stomach problem, I had it. From fainting spells, to outbreaks of hives, to random rashes from (seemingly) nothing, I had it, and no answers. I was always close to underweight as a kid, and pretty much only craved starchy or sugary foods. Despite the symptoms, I lived a very normal, active life.

When I entered high school, my mental health was what triggered the rollercoaster of problems. I struggled with a lot of anxiety, obsessive compulsive disorder, bouts of depression and even displayed symptoms of an eating disorder. When I got to college however, I had to cope in the only way I knew how: finding control in something, anything. I resorted to over-exercising, and under-eating, which led me hard and fast into a deadly combination of anorexia, bulimia, and exercise addiction. After getting help from professionals with the support of loved ones, I was finally in recovery. I started eating normally again, and that’s when I noticed something was wrong.

After nearly every meal, I was sick — and I mean doubled over in tears from what felt like sharp knives in my stomach. I started looking for answers, and got diagnosed with celiac disease in February 2013. That was a huge low for me. My body was literally attacking itself. After everything I had been through with an eating disorder, why was I afflicted with a disease would take away the foods I had just become comfortable with?

I did a lot of healing that first year, physically, emotionally, spiritually and mentally. But my health problems never went away. Sure, I had some good days and good weeks. But all the while, the looming question of “what’s wrong with me” haunted me daily (and often still does).

It took a couple of years, but shortly after I got married in December 2015, I was at another big low with my health. I had so many symptoms that were debilitating to anything I needed to do that required effort. I needed 10-12 hours of sleep a night to feel even a little bit rested. The fatigue was so exhausting I could hardly go to the grocery store. Working out for me was nearly impossible, and as someone who has always been active, even the thought of exercise caused anxiety and muscle fatigue. Getting through a day of work without a 2 hour nap proved difficult. I slept through alarms, tried to get through the day with caffeine, and 2:00 pm was nearly impossible to make it through. The brain fog was so bad that my vision was blurry, my brain literally felt like Jello, and as someone with a photographic memory, I forgot anything that wasn’t written down in three places. I had no appetite and was losing weight weekly. My hair started falling out again. My skin and nails were dry and brittle, and it felt like eating disorder recovery all over again. I knew I waited too long to get help.

Thanks to my caring and supportive husband, I was encouraged to see an endocrinologist. He diagnosed me with Hashimoto’s thyroiditis, which I expected. Hashimoto’s and celiac disease are the unfortunate likely pair of autoimmune diseases that go together. I felt all the emotions of relief and grief. Relief that I had an answer, and grief that I had yet another disease where my body hates itself.

I struggled with the feeling of “OK, but is there anything else wrong? Will I ever get all the answers I need to live normally?” I’m still asking these questions, and will likely ask them for the rest of my life.

You see, with autoimmune diseases, there’s no cure. Sure, with celiac disease I can avoid gluten, and with Hashimoto’s I can take a thyroid hormone to feel “normal” again. But it will never go away. I will always be afflicted with silent disease. But you know what? In being diagnosed with Hashimoto’s, I’ve come to realize how absolutely thankful I should be for a body that can get me through a day, even when it’s hard, for people who love me and care for me, for doctors who want to see me thrive, for the access to foods that can heal, and for a God who cares intimately about my body.

And sometimes not having all the answers is a good place to be. It teaches me to trust, to hope and to find joy in the little things, even being able to wake up in the morning when my alarm goes off.

If you have an autoimmune disease like Hashimoto’s or another silent disease, I want to encourage you to talk about it. Let people know what’s going on. There’s no shame in it. Surround yourself with people who understand if you have to take a raincheck on lunch or a personal day from work. Life is too short to live with a silent disease alone. Let’s break the silence together.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? Check out our Submit a Story page for more about our submission guidelines.