Note: This essay first appeared on The Mighty on 10/9/2017
Recently, I received a reply on Twitter to an article I’d written about living with Lyme disease. It said, “So true. So powerful. Thank you for writing this (green heart emoji).” Right away I knew this reply was from a fellow Lyme patient. The green heart emoji might not mean anything to most people, but for the Lyme disease community it’s like our secret handshake.
Not surprisingly, the Lyme community chose lime green as our awareness color. It’s a cute play on a homonym. We use limes to represent many things. For example, one of our biggest fundraisers, The Lyme Disease Challenge, is to take a bite out of a lime and post a picture or video on social media. Currently, there is no lime emoji, so instead we use the green heart, which on some operating systems appears lime green. Other groups of people use the green heart emoji, but in our corner of the internet we have claimed it as our own.
Many of us put a green heart in our social media profiles to symbolize our Lyme warrior status and when we write messages to one another many of us put a green heart at the end of the message to show we understand. Even large Lyme non-profit organizations, like the Global Lyme Alliance, use the green heart in their tweets and other social media posts. This practice has spread far and wide throughout the Lyme community.
My Lyme story echoes most Lyme stories. From the time I first started seeking medical treatment for my strange symptoms, 10 years passed before I got a diagnosis. When I was finally diagnosed with Lyme, I went from being isolated to having a huge community of other people like me.
Chronic Lyme disease is often denied by the mainstream medical community. They refer to it as post-treatment Lyme disease syndrome and say there is no treatment. Most of us with chronic Lyme disease were not willing to accept that fate, and have created online and community support groups to help locate knowledgeable doctors and compare symptoms and treatments. I often turn to the online support group in Illinois when a new symptom arises. Usually someone else has experienced the same symptom and can point me in the right direction. The online community is also wonderful for those really bad days when I just need to vent or have a cyber-shoulder to cry on.
When I first started my blog and social media accounts I didn’t know about the green heart, but slowly I noticed that after each tweet or direct message there was that heart. Soon, I started to use it, too, and I liked how it added something to the message, like a winky face, but just for Lyme. Eventually, I added it to my Twitter and Instagram profiles and when people came upon my profile they already knew a little bit about me and the type of symptoms I was dealing with.
The green heart emoji is a little symbol of what we all face together and a small act of solidarity and love. Lyme patients, let’s keep spreading the love across the internet, one green heart at a time.
"No beauty shines brighter than that of a good heart." - Unknown
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.