Tonight was a really big step for me. Usually on the really bad days when my legs feel like jello and aren’t stable enough for me to rely on, I stay home alone and hide. Thankfully most days I’m able to rely on them enough to get by, but this treatment is kicking my ass and I have to accept that it’s going to be like this sometimes. I finally asked myself, am I going to stay home and hide myself every time I feel this weak? Or am I going to do all that I can to still get out and enjoy some of what life and this summer has to offer?
I haven’t been able to play on my ball team at all this year but I still love to go out and watch, visit with my friends and enjoy the fresh air. I am embarrassed to say that I was absolutely mortified to go out in public with a cane. The walk from the car to the ball diamond felt like the longest walk of my life. I almost fell over my own feet even with the cane to keep me stable. I swallowed back tears and pride the entire time because I was determined to get over this self-worth issue and enjoy as much as I can of my life in treatment.
For the most part everyone was kind, people didn’t comment and mostly treated me normal which was greatly appreciated because I’m sure I would have burst into tears if they had. I kept telling myself that it’s just one night, I don’t have to use it all the time, and that I should be proud of myself for getting out when I could have easily said I wasn’t well and stayed home.
While I was sitting watching the game, as well as sitting socializing afterwards, I felt normal. Although having an invisible illness can have its downfalls, one of the benefits of it being invisible is just that – people don’t usually see it. Having to use the cane, in my mind, made it suddenly visible which made me extremely uncomfortable.
I bought this headband last weekend and I love it. I love the colour, I like how my waves stick out the sides and back of it, and mostly I like that it wicks the intense sweat that I get on the back of my neck from the infection. So as I’m sitting there socializing, someone very close to me says to me, infront of a handful of other people, “you should take that thing off your head you LOOK like a Lyme patient.” ….
My feelings in that moment were such a mixture of confusion, hurt, shame, sadness, embarrassment, anger, I don’t even know what else. The one thing that I can somewhat appreciate about having chronic lyme disease is that in my case it is usually invisible. The majority of the time I can get away with looking like everybody else.
I was so worried about what I looked like as a 26 year old with a cane, and I end up getting called out for wearing a headband that “makes me look like a Lyme patient,”. For once I may truly be lost for words…