Why I Am An Open Book About My Chronic Illness

by Emily Levy

Even before I found that I had Chronic Neurological Lyme Disease and Co-Infections, I always felt alone. I knew something was medically wrong with me, but no doctor could figure it out.

Going through high school feeling like something was “extra” wrong with me was just like a brick being dropped on my already pounding head. When I was told that what was wrong with me was depression and anxiety, I just wanted to tell people so they would understand. However, because of the social stigma related to depression, I knew I should keep it to myself if I didn’t want to further stand out in high school. I knew other people were suffering in silence, but I didn’t want to be the odd one out.

So when I finally got diagnosed with Chronic Lyme and started to learn about the disease, I wanted to take this negative opportunity and turn it into something positive. I knew that I could positively impact other lives if I could share my story. 

This is why I am no longer afraid to talk about the “hard stuff” that has plagued my life. Want to know how Lyme as affected my relationship with my boyfriend? Sure, I will tell you about that. Want to know how I showered and had to ask people to help me dress when I had a PICC line? No problem. Want to know how having a disease that is not recognized by the CDC has affected my bank account and lifetime earning potential? Fine. 

Ask me anything about living the spoonie life and I will tell you my raw, honest, and earnest truth. 
So go ahead, ask me anything at [email protected].

I look forward to telling you about the time that I had the cute hockey player in my finance class look at me like I was a walking disease…

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