My Lyme Disease Does Not Define Me

Lyme does not define me.

It took me a long time to accept this. When I was first diagnosed, my life revolved around Lyme disease. I couldn’t stop reading about it and worrying about it. Every question, answer and action of mine involved Lyme. When I thought about myself, the first thing that came to mind was “Lyme.”


With Lyme disease, or any chronic illness, it’s easy to identify and associate with our illness. After all, it takes over our life and affects every aspect of it. It makes us forget who we were before we got sick, and who we are becoming. It’s easy to get lost in the pain, symptoms, shame, guilt, frustration and embarrassment.

But it’s important to ditch the labels and focus on who we are at the core. It’s OK if we identify with our illness, but we also need to expand our identity. We are so much more than our disease, our symptoms and our lab tests.

Maybe we need to identify with our positive qualities and passions instead of our illness.

What are your positive qualities? Maybe you are generous, friendly, playful, witty and intelligent. Identifying with these traits instead of our disease helps take us out of the self-imposed boxes in which we put ourselves and makes us unique. Sometimes this can change every day. And there’s nothing wrong with that. We are constantly changing.

What are your passions? If you weren’t sick, what would you be doing right now? Maybe you would be focused on raising your kids. Or creating art. Making jewelry. Playing sports. Singing. Dancing. Knitting. Starting a business. We all have talents and passions that go beyond our illness. Just because we can’t pursue our passions in the present moment does not make them any less important.

Keeping our hobbies active (if possible) can help remind us of our strengths and interests. Maybe there are days that you can’t get out of bed and can only think about your symptoms. And that’s OK. Maybe other days you can do something that brings you joy, even if it’s watching your favorite TV show from bed. Or reading a good book. Or writing. Writing down our thoughts, feelings, and goals can help us realize that we are more than our illness. Sometimes our best ideas come to us on the worst of days.

Maybe we can define ourselves by love, kindness and relationships. We can love ourselves fully, even the parts that are ravaged by Lyme. We can shower our illness with love instead of fear. We can be kind to ourselves by practicing self-care, making ourselves a priority and staying optimistic, even on the worst days. We can see our relationship to Lyme as temporary – a visitor passing by that is actually a blessing in disguise.

In this way, Lyme shapes our identity but does not define us. Let’s take back the power Lyme has over us. We may have Lyme, but it doesn’t have to have us.

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Thinkstock photo via moodboard.

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