I was bit by a tick sometime in my sixth year of life. We don’t know exactly when. The news of Lyme disease, which was first recorded in Connecticut in 1975, hadn’t quite reached the average doctor yet. According to my medical records, I was treated for a rash and flu-like symptoms, and then when I had ongoing swelling and joint pain, tested for things like knee injuries and junior rheumatoid arthritis. When my GP ran out of ideas, he referred me to a specialist in child rheumatology. That was when I was finally tested for Lyme, months after the first infection. By then, as doctors now know, is too late to treat the infection.
There’s still a lot that we don’t know about chronic Lyme (known by the CDC as post-treatment Lyme syndrome), but when Lyme goes untreated it gets into all the parts of your body and affects lots of things. There’s a connection between Lyme and mental health disorders, sleep disorders, heart problems, lowered immune system, chronic joint pain, and so much more. Different people experience different symptoms with Lyme and it doesn’t always present the same way.
My chronic Lyme involves mental health struggles, UARS (requiring a CPAP machine), circadian rhythm disorder, joint pain, spinal problems, increased sensitivity to pain, degenerative joints, and chronic migraines.
So you can see how working a 9-5 was a struggle for me. Getting up early, working “normal” hours, and dealing with office politics were not easy for me.
Honestly, I felt inadequate. Like I was just being lazy, and if no one else seemed to struggle, then I didn’t have a right to struggle, either.
That’s a feeling I’ve had my whole life. I assumed that all the other kids in high school had back pain, too. That my struggles to wake up early, despite desperately wanting to be able to, were just because I wasn’t trying hard enough. Maybe it was because I got sick at such a young age, but I always struggled with owing up to my pain, because I didn’t want to be seen as a complainer. I thought my experience was normal, and I was just weak.
It wasn’t until I started therapy in college that I realized there might be something real wrong with me. I didn’t get up the courage to tell my doctor until I graduated.
It was so gratifying to find that I wasn’t imagining things. There was real stuff going on in my body that wasn’t normal. And I finally started getting help.
Still, another couple years passed before I learned that I might not be able to do all the same things that other people, and that I needed to work *with* my body and not against it.
