Writing was one of my first loves since childhood, but we’ve grown apart since high school. First, school demanded all my writing energy for papers, then work claimed it for emails, copywriting, and documents. Brain fog, traumatic experiences, and memory issues made any writing increasingly difficult – even personal journaling. As I now find myself suddenly laid off from my corporate visual design job, I decided it’s time to focus my energy on what I’ve always dreamed of: being a writer.
I’ve been sick for a very long time. In hindsight, I can trace the beginning of my Lyme disease journey since at least age 15 – but I was likely infected well before that, as I grew up in a rural part of the Northeastern US. I don’t have a single memory of being “healthy” – my cognitive disabilities have been present for as long as I can remember, but were masked so effectively that I made it well into adulthood and had to advocate for seeking answers on my own before I could understand my relationship to the world around me.
Once I received my ADHD diagnosis and started looking deeper, I realized that I had been managing it all along without knowing what I was managing – from the daily schedules I made for myself, to meal plans, to my addiction to running and everything in between, I had figured out how to manage my life in a way that seemed organized and efficient from the outside. It’s no wonder that no one else knew how much I struggled – I’m resourceful AF – out of necessity.
As my health declined, I also realized how much of my daily life revolved around things “healthy” neurotypical people don’t experience – high anxiety, deep depression, suicidal ideation, insomnia, chronic pain, brain fog, migraines, nausea, and other GI issues.
In 2021, I was finally diagnosed first with endometriosis, then Lyme disease and co-infections. It was my third time being tested for Lyme, and my first time seeing a Lyme-literate doctor. I was so sick that I had to take a long leave of absence from my job, and at times was unable to care for myself. I was sure I wouldn’t live to see my 30th birthday.
This is, unfortunately, a common experience among Lyme patients. We are severely misunderstood and underserved. Like many other survivors, I find the current state of care unacceptable, and am using my voice to incite change however possible.
This blog will cover a wide range of subjects, because illness doesn’t exist in a vacuum. Every other facet of my life and identity have been challenged and impacted by my health. One of the biggest things I’ve learned, largely through connecting with other people on the internet, is that everything is a tiny bit easier when we know we aren’t alone. That it’s not all in our heads. That healing is possible, as demonstrated by real survivors. Sometimes, if we’re lucky, someone shares a piece of information that might literally save our lives.
I’m so glad you’re here. Whether you’re a fellow spoonie, ally, or just looking to learn, I’m here for you.
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