When someone asks about my illness, they’re usually referring to a diagnosis — like “What do you have?” — but it’s not that simple. What I have is a combination of complicated symptoms, that affect every system in my body, and don’t necessarily fit under one “diagnosis”. Sure, if you asked that question, I could respond with a list of things I’ve been diagnosed with, but again it’s not that simple. Or, I could recant my entire story up until this point and you’d still be wondering, “So, what do you have?”.
Let me clear that up once and for all.
First, it’s important for me to add that I did not receive a diagnosis of any kind until I was sixteen years old. I silently suffered for sixteen years. I saw hundreds of doctors in several states. I was a medical case that nobody wanted because they couldn’t diagnose me. Six days before I graduated from high school, (yes — I graduated at sixteen but that’s a story for another time), I finally received one diagnosis leading me on an entire new journey of healing and discovery. It was unreal. It was equally terrifying and thrilling.
The most powerful factor in my illness is an autoimmune disorder. Basically, my immune system hates me. Just kidding, but it’s a bit confused! The immune system’s job is to produce cells (T-cells and B-cells). These cells bind to antigens (cells responsible for causing an immune response; the bad guys) and the antigens cause the immune system to produce antibodies (these are the warriors; cells responsible for killing viruses, bacteria & bad guys). The problem is, when my immune system recognizes an antigen (when I get a virus or bacteria) and feels the need to produce antibodies, the antibodies don’t attack the virus or bacteria. Instead, the antibodies head north and attack my hypothalamus and brain stem. So not only does the virus or bacteria continue to wreak havoc on my body by burrowing it’s way into my blood stream, but my brain also suffers. This autoimmune disorder will stick with me throughout my life, but I manage it pretty well.
To make my autoimmune disorder even more complicated, I was bit by a tic when I was four years old. The tic that bit me was carrying Lyme Disease, which is pretty common, but it was also carrying less commonly understood pathogens known as Bartonella, Babesia, and Mycoplasma. These parasites lived in my body, producing autoimmune reactions for twelve years, and continue to do so, as I work to rid my body of these diseases; this is known as Late Stage Lyme Disease. While I went undiagnosed for so long, these pathogens burrowed into every body system; they’re in my brain, they’ve paralyzed my entire GI tract, they’ve altered my breathing and heart rhythm. I’ve been working with one of the best specialists in my state for four years, tearing apart my body, to get these things out. They are tough little fuckers. Nowadays, I’m just about in remission. Due to the nature of Late Stage Lyme Disease and my history of autoimmune disease, it’ll never go away completely.
So at this point in my life, I wish I could say I’ve got it under control, but I still have a long way to go. But, if you were to ask me five years ago where I’d be today, I would’ve told you I’m not going to live past twenty, or even eighteen. I certainly wouldn’t imagine I’d be semi-healthy, living an active lifestyle, working more than full time and happy.
For now, I’ll stop hating my port, I’ll continue my treatment and keep kicking ass.