I’m writing this as I sit in the lobby area with my eyes peeled on a large oak door, waiting for a nurse to walk me to the backroom.
The same routine accompanies the same sandy beige color coating the walls. The receptionist forces the same cookie cutter smile in response to everyone who walks in. I have always found it a bit bizarre that someone could get used to a setting like this – a cold and neglected place that would feel foreign to the majority.
Yet, here I am, five years into my journey of misdiagnosis, a body that continues to fail itself, and a reality that I must come to terms with. It’s a constant stressor to my everyday life, whether it be work, school, or my relationships with others. “Why is this happening to me?” It’s one of the constant questions I’ve asked myself over and over again during my journey alongside my autoimmune disease. Even just mentally picturing the label “Autoimmune Disease” doesn’t do it justice.
So, what is an autoimmune disease then? Well, to put it in its simplest definition, it is usually when a person’s immune system has a difficult time telling the difference between healthy tissues and something similar to a virus. Then the person’s immune system will attack these healthy tissues the same way it would attack a virus. These autoimmune issues can stem from a lot of different factors, but most seem to be genetic and environmental.
How common is it actually for someone to already have, or develop, an autoimmune disease? Autoimmune diseases are actually quite common for people who reside within the U.S. and all around the world. For example, a recent analysis done by the National Institute of Environmental Health Sciences discussed various different forms of this disease and stated that “Collectively, these diseases affect more than 24 million people in the United States.” So, it’s actually a lot more common than people think. However, the problem with autoimmune diseases usually occurs during the diagnosis period for most. These disorders take a while to narrow down before one is diagnosed and treated for the disease. Even my doctor told me, on average, it takes years, and sometimes even over half a decade to get diagnosed with the disease. This can mostly be attributed to the person suffering from the disease not seeking help initially, or giving up halfway through the process. When it comes to my situation, I have given up multiple times due to frustration, anxiety or just trying to save a bit of cash.
My journey, like many others at sixteen, was mostly average. My health was in order, and I was still very active at the time through sports and other activities like hiking. I would say that there was nothing really to write home about until I went to my pediatrician at the time. I went for a lousy pain coming from my knee that would constantly ache and had been nagging me for a month or so. Little did I know what an impact that one doctor’s visit would have on my life. That one knee issue eventually turned into a torn calf, which led to a cardiovascular problem in my veins, and ultimately led me down the yellow brick road of every specialist, clinic, and test, trying to find the cause. I was lost and stuck in a directionless cycle. I felt utterly alone and like a burden to everyone that was close to me, which is what ultimately led me to distance myself from friends and family. “If I couldn’t even take care of myself, how could I take care of others?” I wondered.
It wasn’t until I had transferred to UNO and got some blood work done that the doctors finally caught something. Years after this all started, they were finally getting closer to finding out what was the root cause of my health problems. Rheumatoid Arthritis was most likely the main culprit this whole time, but it has still not been all the way confirmed yet. I still have to get further blood work done for them to be certain. It’s not ideal, but progress is better than anything I’ve had for the past five years. This has helped improve multiple areas of my life for the better. My relationships with others have improved greatly, and my once shaded pessimistic outlook on life has turned into a content intrigue about the future.
However, even though my autoimmune issue has taken a bit of a turn for the better as of late, a part of me still worries about what my future may hold. Because even when people are finally diagnosed and given medication for the disease, their problems often don’t just stop there. Sometimes the medication they administer to people suffering with an autoimmune disease can have side effects almost as bad as the disease itself. That is not always the case, but it is enough to keep me up during the night.
Thus, I find myself back in the lobby waiting area fidgeting with my car keys to pass the time. I heard a grinding sound coming from the large oak door being slowly pushed open as one of the faulty screws on the door’s bottom hinge clicks every time it’s opened. A nurse with a friendly smile walks through.
“Jake, are you ready?”
“Yes, thank you.”