“This isn’t what it looks like”: Outing the invisible pain of Lyme disease

Cupping 2013 (2)This is a picture of me after a session of Traditional Chinese Medicine (TCM) cupping therapy. TCM is one of the modalities I have used in my recovery from Lyme disease. The marks on my back here are made by heating the air inside small glass cups and then placing them on my back. As the air inside the cups cools and condenses, it creates a suction. The suction is used as a kind of acupuncture, to draw blood to the surface of my body and help move any stagnation. Cupping doesn’t hurt, although the visual effect is dramatic. I like this picture because it is one of the few that captures on the outside a little of what I’m feeling on the inside.

Most of the time, this is what I look like with Lyme disease:


Which is to say, totally fine.

My point: this isn’t what it looks like. I’m in a lot of pain in this picture, as I am in pretty much every picture taken of me between 1999 and 2010. It was 1999, as far as I can tell, that I first became symptomatic with Lyme disease, and 2010 that I was given my definitive Lyme disease diagnosis and began my recovery. In the 11 years in between, I went from doctor to doctor who all told me I was “fine! Better than fine! You are a healthy young woman with a lot to look forward to!” In this picture, my arms are aching and my back is tired.  I remember this day well, just as I remember all the times my husband had to brush my teeth for me, help me into my pajamas, and put me to bed. Just as I remember the day I arrived home and announced, “Guess what? I’m disabled,” after I had finally decided to register with the student disability service at my university to get the help I needed to complete my degree. Just as I remember the day we had to look for daycare for my 10 month old son, when a postpartum Lyme crisis left me unable to care for him – unable to even be left alone with him so that I had to be cared for, even as I tried to care for him. Yet, to look at me in this picture, I look like any healthy young woman, don’t you think?

The month of May is Lyme Disease Awareness Month and I’ll be posting a few blogs here to raise awareness of Lyme disease. This first one is just a reminder that what you see isn’t always what you get with Lyme disease. Learn more.

Top image © 2014 Erin Bidlake
Bottom image © 2014 Mish Boutet

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