Why I Have Chosen Not to Be an Advocate for Lyme Disease


Lime green. It seems like just a color, and for many it is, but for Lyme disease patients it’s a color that represents the struggle they’ve faced. It represents many sleepless nights and the constant uphill battles faced because of Lyme. It represents all the patients who can’t get the treatment they desperately need because of the false information surrounding chronic Lyme. When May comes around each year, the Lyme Disease community lights up in bright green to help spread awareness for what many fighters face… and I’ve never participated.

I’ve always been somewhat shy, and have kept myself guarded even before I got sick. It’s part of who I am, so when I got sick and joined this “club” that no one wants to join, I tightened my social circle and my “personal bubble.” I didn’t openly share what was going on with me, and quickly deflected any questions from peers about my health or why I wasn’t in school. My personal accounts on Facebook, Instagram and Twitter all remained clear of any mention of Lyme disease out of fear of being “exposed” and having my illness swallow up the last bit of independence I had left from it. I didn’t want to inadvertently allow Lyme to burn a label into my chest, which in turn, in my mind, defines me as a person.

 

I have wanted nothing to do with Lyme disease from the moment I was diagnosed, and my stance hasn’t changed. Having close friends who do choose to advocate, I occasionally feel as if I’m doing something wrong by not standing up and openly sharing my experience with others. I’ve read posts from others writing about their struggles, or articles discussing new treatments. With the “share” button being not but a few inches from my mouse, I ignore it and continue scrolling, hoping the information will make its way to someone who needs it.

Right now, there are so many patients who struggle at the hands of ignorant doctors who refuse to treat them. This is because of a lack of information, acknowledgement from the CDC and lack of education about chronic Lyme disease in medical schools across the world. Patients of all ages struggle endlessly for no good reason, often being told it’s “all in their head.”

I don’t always remember how lucky I am to have access to all the information I need, and all the physicians I need to help me when problems arise. I’ve never had to fight alone, because I’ve always had a strong support system backing me. I’ve never had to wonder how I’m going to make it through the next day, because I always have someone helping to carry me through it when needed. I’ve never had to spend hours calculating through brain fog how to afford treatments because my family is financially stable. While I’ve struggled in other ways during my journey, I’ve never encountered some of the biggest initial struggles Lyme disease patients face. While reflecting, I’ve often found myself wondering if by deciding not to advocate or press “share,” I could indirectly be harming others.

I’ve been sick for almost five years now, and in all of those years I’ve addressed my struggles publicly no more than three times across all of my social media accounts. I’ve refused to discuss my journey with anyone but close friends, family and my doctors. I don’t wear lime green in May, or any other time of the year. I don’t wear a green ribbon to show my genuine support and concern of an under-researched and non-believed disease. I don’t post statuses with the hope that people will recognize what one tick can do and take it seriously.

Still, I am determined to make a difference, even if it’s small and more on a personal level. I’ll privately discuss and help other patients find treatment. I’ll reach out to fellow patients who I know are struggling to try and make their day a little bit better. I’ll make sure I can be a listening ear to anyone who needs me. And as always, I will write for The Mighty and share my experiences in hopes I can maybe help someone else who is struggling.

I will never be an open book about my struggles, but I’ll do a small part in helping the Lyme disease community have their voices heard.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Julia_Sudnitskaya.

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