Where Is Everyone?

Something I personally experienced (and I hear it mentioned over and over) is the fact that those of us facing (or have faced) an ambiguous illness / chronic illness end up somewhat isolated. Whether we are truly sitting home alone or are surrounded by people who dont understand or dont believe us…the result is the same. Our previous relationship with peers is forever changed.

Personally, I had people blame me for my symptoms. I left my full-time teaching job when I was sick during pregnancy. I was scolded by a close friend that i was no longer reliable and she couldn’t count on me anymore. Co-workers gave me the cold shoulder as if I had pulled one over on everyone. My doctor at the time told me that I did not have Lyme and put me on antidepressants to help with my wake/sleep issues and fatigue. It helped a little for a while, but we learned later that the LabCorp testing did not pick up my infections, yet a couple of years later my Ingenix lab testing showed up across the board. I had been sick for a long time and getting the diagnosis was a strange feeling of disbelief. I thought it was the end of the journey, it was just the beginning of a new branch.

I managed to keep friends at first, or make new ones anyway, who were my school-age childs parents, our neighbors who also had kids, etc. We managed to maintain a somewhat normal facade after our move to Kentucky in the rural suburbs. I was able to volunteer at school now and then, as our son was sick too and I liked to be around when I could. I found it helped not only the school, but how he was treated at school. Eventually when it all hit the fan, those volunteer days came to a stop. The same people were very supportive on social media, and even pulled together to raise money for our lyme treatment. Once the initial fundraising had passed, however, what is left to talk about? The previous chat of how the kids were doing, how I was doing, how is work/school going always came back to the same topic…. illness. Eventually, people already know what it comes down to and stop asking, or avoid you. I totally get it, they’ve got their own stuff to worry about, they just aren’t able to carry mine too.

The holiday get-togethers may end in looks of judgement, especially from those nurses in my family that firmly believe I’m full of it…. an attention seeker maybe? I dunno, I truly don’t want to. I do know that I was judged as was proven by some things I shouldn’t publish publicly. My ability to parent was questioned, my caring for my mother was questioned, and I was asked over and over where all the money went. I eventually cut those people out of my life and kept a few friends online by holding steady on the outside. I learned not to share my pain, I learned that they would probably not understand.

We should have gone into counseling as a family. We had lost one house and the second was completely gutted from mold and we then lived in a hotel until it was finished. It was never finished as the contractor disappeared. When I thought things couldn’t get harder, I was tasked with throwing everything in dumpsters that was contaminated from mold…that was pretty much everything we owned. We didn’t know which things were making our son sick, and since he wasn’t able to walk at the time (in addition to all of the other symptoms) we made sure it all went for his sake. So in addition to losing everyone, our dogs both died, and we lost everything including the clothes we wore. I mention all of this because the PTSD was very real. I used my art, meditation, and other techniques to help myself balance the fight-or-flight response I was stuck in, but I should have been in counseling the entire time. Looking back, it probably would have helped me lower the ever present high cortisol.

I’m working with a few counselors who have experience with chronic illness, and even Lyme or mold exposure. Be on the lookout for a future interview where you can submit questions to a mental health care practitioner.

Spread the love