Chronic illness has a way of not only stealing your health but also something deeper, something more personal within yourself if you are not careful.
Last summer, while I was traveling and volunteering throughout Europe, I received an email from my mom that would go on to dictate the course of the next year. Tired of reading, learning, trying countless different things, and spending money, she was ready to give in and say good enough on her own health. Then, she watched Dave Asprey’s documentary, Moldy. She picked herself up and had the house tested. The test came back positive. There was mold in our basement, likely from water damage.
It was early morning, and I was alone outside when I read her email. It said she thought she had identified the root cause of both of our illnesses. A wave of emotions came over me all at once. Anger. Relief. Sadness. I sat there and cried for a few moments. While I was familiar with mold causing illness, I had never considered that my childhood home might have contributed to making me sick.
Fast forward several weeks and I was home briefly before returning to college. Sadness and relief were replaced with anger and disbelief. Four years of attempting to improve my health had taught me to be skeptical anytime someone had “figured it out”. My parents had begun the process of remediation and the house has been destroyed since. The mantra of “less is more” drove every decision. I kept my head down and refused to take the situation too seriously since I was returning to college in a matter of days.
Once at school, annoyance and confusion were the underlying emotions. I was annoyed that mold was the primary focus of many conversations. I was confused by the implications and by the science behind the cause/effect relationship of being exposed to biotoxins. More diet changes came along with more supplements and protocols. Eventually, more mold was found in a different part of the house. Worried about my apartment, we bought a air filter. Throughout this, there was virtually no improvement in my health.
In the beginning of second semester, my mom had an appointment with a new doctor who specializes in mold-related illness. She was also tested for Chronic Inflammatory Response Syndrome and to see if she was a carrier for a genetic predisposition to not being able to remove mold toxics from the body. Given her medical history, shocked was the last word to describe my reaction when she was identified as a carrier. I did however become persistent on having the test done for myself. I debated not having the test done and enjoying ignorance, but ultimately I needed to know. So, I continued to insist on doing the test.
When the test came back indicating that I too am a carrier, I felt a moment of grief and then nothing. I moved on and refused to dwell on it. Genetic conditions are hard to deal with emotionally. There is something about your body being wired incorrectly that weighs heavier on you. For me, I dealt with it by not dealing with it. While this condition is not life threatening, it is life limiting – it impacts the quality of my life and what my body can handle. It was not until I returned home for the summer that I began to realize the gravity of the situation.
This summer has been very difficult for me in ways I did not foresee. I anticipated returning to a house that was clean and free of mold after months of their remediation and cleaning. My parents recently found more mold and we are remediating again. I thought my body would have a chance at healing. Instead, I found myself working in a building with black mold and quickly regressing health wise with every known and unknown exposure. This realization felt devastating. Being a carrier is one thing; having it effect you is another.
Since this realization, I have been primarily grieving and angry about the situation. Denial was strong in the beginning. I put my head down and ignored the mold in the building. My thought process was, “this was not my life; this was not my story”. I believed I could just willpower myself through it like so many other health problems, but I could not and I cannot.
There is a lot of sadness and feelings of isolation in all this as well. I have lost the ability the naively go wherever and do whatever I please without thinking of the potential effects. More lifestyle changes mean more structure and investment into my health. There is a strong desire to cry, yell, and runaway all at the same time. I have built walls around myself out of anger and I have become annoyed. I have bought into the lie that this is not fair, like anything is capable of being that though.
Now, I still have all of these emotions, and more, running through me. I am moving towards acceptance, but it is harder than I imagined. I wish I was handling all of it with more grace, but unfortunately I am not. Instead, I get angry and upset and I have become wary of the environments I cannot control.
I share this because the emotions are real and undeniable. So often, we sit and dwell within ourselves, annoyed that we are feeling a certain way. Wrapping our head around a diagnoses, especially a genetic one, can be difficult and it causes countless emotions and reactions. Embracing that part of reality is hard, but so be it – It is part of the journey.