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Lyme Awareness Month, Day Fourteen: The Secret Life of Lyme Disease

May is Lyme Awareness Month--a month dedicated to educating the public on all facets of Lyme disease and other tick-borne illnesses. We thank all of the patients, advocates, and Lyme organizations for their dedication in helping to spread the word and save lives. Here at LymeBrave Foundation, we're taking an unfiltered look at what it's like living with this chronic illness by opening up our journals and sharing the highs and lows of life with Lyme. Join us for our 2018 awareness campaign by helping to #shareyourstory. Contact us to find out how!

Editor's Note: The following is an excerpt from Susan's personal journal, dated April 23, 2016--shortly after a relapse and reinfection of late-stage, chronic Lyme disease.

I try to share a lot of my story on social media because I feel so isolated by this disease and I want to build awareness—to educate people. I feel like I can’t do much these days, but I can do this.

But what I write there barely scratches the surface of what I’m really feeling, of my every day. I try to keep a positive attitude, I try to think of everything I’m grateful for in this life—and truly, practicing that with this journal has been helpful.

But this disease sucks. It sucks the life right out of me, and my soul is tired and weary and it’s hard. And sometimes I think that it’s too much, and it’s hard to find my way back to the strong, brave girl I know was there just days—hours—ago.

Lyme disease is tiring. Today, I was able to get dressed, drive fifteen minutes away, and sit in a High School auditorium for a spring musical and drive back home. And since I’m writing this retroactively, I can tell you that I spent the next two days curled up in bed with a fever and leg pain, barely able to walk downstairs to let the dogs out because the exhaustion is so great, my body becomes a lead weight I have to drag around with me.

But who wants to hear that?

Lyme disease is lonely. It’s so, so lonely. I try to tell my friends and family how much I love them, how grateful I am for them, because I need them to know. They’re probably sick of hearing it, but I need them to know that I couldn’t survive this without them.

Even now, even though I’m slowly getting better, I need them. Especially now I need them. Because I’m stuck in an infernal in-between where I’m not as sick as I was, but I’m definitely not well.

This is where life becomes hardest… I want so much to be a part of the world—I get glimpses of it, a taste of it, before it’s snatched away again. I want to have fun and socialize, to go back to work and feel like I can live independently and have a purpose again, to date and feel desirable and wanted like any other girl.

Some days, I do have that. But it feels like such a tease. Because it never lasts for long. Most days, I’m reminded that life is just out of reach—like a window separating me from the world... Look, but don’t touch.

Lyme disease is faith. Because faith is what I cling to. Faith that there is a purpose to this. Faith that I belong here. Faith that through this pain, I can be a voice that stands up and says to others, “You are not alone. I’m here for you.”

Faith that whispers, “Hold on, dear child. This isn’t the end. There is life for you yet.” Faith that wraps itself in hope and pulls from the well of love—a well that cannot, will not, ever run dry.

This is my life. This is my every day. It’s what I want to scream to the world: we’re not invisible if you choose to see us.

- - - Will you show the world you're LymeBrave and join us for our Lyme Awareness Month campaign? Contact us at to find out how you can help#shareyourstory!

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