Life With an Autoimmune Disorder

Something traumatic happened that changed my life check: 

You know how most kids got really excited about getting picked up from school early? That wasn’t really what it was like for me. Over the intercom I would hear, “Ashley to the office for dismissal, please” and my heart would sink. Here we go again. Another day, another doctor’s appointment and another shred of lost hope. It’s like I was stuck in a never ending cycle of pokes and prods, and for what? I had pretty much memorized every possible spiel a doctor could give me. 

Indigestion. Well you see, it’s simple. I was told to keep a food diary to keep track of all foods that I eat. If something caused a flare up I would cut that food out. A good idea, at first, until I had cut out essentially every food that existed in my house. A few months after that appointment I was eating plain rice for pretty much every meal.

Fatigue. Again, very simple. I was not "getting enough sleep." I can’t tell you how many times I heard this one. I was just like every other high schooler out there. Supposedly staying up all night to text my friends. Except, you see, I would come home from school, bulldoze through my homework, and pass out on the nearest piece of furniture. I literally could not keep my eyes open any longer, and my body would just shut down.

Joint pain. Everyone always assumed it was due to the sports I played and the strain it put on my body. I started high school playing sports in all three seasons and I finished high school playing none. But it didn’t matter. My body hurt just as much later in high school as it did when I was a freshman. There were days I would lay in bed and dread getting up because of the pain that was associated with it. Giving up the activities I loved was the hardest part, and even then, it didn’t fix what I was going through.

Sensitivity to the cold. You know in the summer how it feels to walk back inside after having the hot August sun beat down on you. The cold blast of air conditioning hitting your face, the beads of sweat on your neck that would slowly dissipate or the first deep breath without the summer heat sweltering all around you. After about ten minutes, this grew to become actual torture to me. I couldn’t tolerate the cold, which was in reality just normal room temperature. The click of the AC unit turning on would send a shiver down my spine. In a way, I became the person who enjoyed sitting in a car that had been sitting out in the beating sun all day. Yes, it was extremely bad for me, but it was the only time that I didn’t feel cold. 

There were days my mom and I would leave a doctor’s visit and I would bawl my eyes out in the car. I was frustrated. I felt like no one was really listening to me and I couldn’t for the life of me figure out why. I was in pain and crying out for help, yet no one was answering. Every appointment was a shout into the void, but no one heard me. I couldn’t help but feel that this would become my new normal. Maybe it all was in my head and nothing major was really wrong with me. 

There was one year where I finally stopped advocating for myself. It was a pretty tough year. On the outside I tried to act as put together as I could simply because I just wanted to move on. I wanted to look at myself in the mirror and make peace with what I saw. I wanted to look at my arms and have the first thing I see not be the needle marks at all of my veins. I wanted to put all of this behind me and focus on something else for once in my life. Maybe if I stopped thinking about how I felt, then it would finally stop. It was fleeting, but I tried anyway in spite of knowing that it wasn’t going to last.

My mom eventually realized it was a facade. Luckily for me, she decided to make one final appointment as a last ditch effort. Had it not been for this moment, then I am honestly not sure where I would be right now. She was the advocate for me that I didn’t have left to be for myself. She walked into that appointment with guns blazing and she wasn’t going to take no for an answer. When I tell you that my mom pulled a Karen, she really did. At the time, I was mortified that I was related to this woman. She was demanding and loud and she didn’t settle, and I think that was what saved me. 

On September 29th, 2017 I was diagnosed with Hashimoto’s Disease. Hashimoto’s disease is an autoimmune disorder that causes the immune system to develop antibodies that attack the thyroid gland, which creates a buildup of white blood cells in the gland. Because of this build up, the gland can no longer make the thyroid hormone. This is dangerous because the thyroid hormones control how every organ in your body uses energy. Essentially, because my body had very little of the hormone left, all my organs’ functions had begun to slow way down.

I can’t begin to explain to you how relieved I was to finally know what was wrong with me. After so many years of everyone telling me that it was all in my head, I finally felt heard. There was finally a word that describes everything that was wrong with me. I spent practically all night googling the disease so that I could learn everything about it. And while I was ecstatic to finally have a diagnosis, there were still so many variables left in the equation. We had to find ways to manage this condition and bring my symptoms under control. Just because I finally had a diagnosis didn’t mean that suddenly everything was fixed. 

Everyday I wake up and still have to deal with all of the symptoms of the condition. It was extremely difficult for me to come to terms with the fact that I may have symptoms for the rest of my life. Just because I am on medication, doesn’t mean I will suddenly be the picture of health. I didn’t want to accept the fact that this was a chronic condition that would likely affect the rest of my life. College was a real wakeup call for me. Although I am now on medication that helps regulate my hormone levels, it doesn’t magically change the way I feel overnight. A lot of the time I can’t keep up with my friends. I can’t go to every sporting event. I can’t go to every party. I have to take things at my own pace, which usually is slower. I wasn’t okay with that at first, but I am now.

Although the slower pace of my life does still make me sad at times, in the end I am just glad to have treatment options that allow me the chance to have a more normal life. I am happy and grateful for the time I do get to spend with my friends and family. I am extra thankful for each sunrise and sunset because there was a point in my life where I didn’t know how many more of those I would get. I find joy in the small things, like the days I am able to take a walk across campus with little pain. I look back and see how far I’ve become and I’m beyond amazed in how strong I was back then, but also how much stronger I am now. There is absolutely nothing wrong with a slower pace. Life is not a race, and I am happy to stop and smell the roses along the way.

person standing on field facing a sunset Victor Freitas via Pexels