How the #MeToo Movement Taught Me to Share My Lyme Disease Story


Earlier this year Oprah Winfrey moved a crowd to standing applause during her acceptance speech for the Cecil B. DeMille Award (the lifetime achievement award) at the 75th Golden Globes. One line in particular brought me to tears:

“…what I know for sure is that speaking your truth is the most powerful tool we all have. And I’m especially proud and inspired by all the women who have felt strong enough and empowered enough to speak up and share their personal stories.”

She went on to say that one story can transcend culture, geography, race, religion, politics, or the workplace. That’s certainly what the Silence Breakers accomplished in 2017 as Time Magazine’s person of the year, launching the #MeToo movement and empowering women to speak out against sexual violence and harassment.

I can’t help but draw inspiration from the #MeToo movement and how it encourages women to share their story. Sharing may be as simple as saying “me too” to the chronic illness community. Freeing yourself to be honest about the struggle (that you may still be in the midst of) and owning your truth publicly – despite what others may think or say about you. The phenomena of the “me too” movement is that one brave soul can start a cascade that empowers others to break the silence.

It was in fact stories of other Lyme patients that caused me to have my own aha moment. After two years of searching I never thought my puzzle of seemingly unrelated symptoms would ever make sense to anyone. But as I read the stories I was relieved to see that I was not alone, and gained confidence that my puzzle was finally being put together.

Chronic illnesses like Lyme disease are notoriously difficult to diagnose with standard blood tests reliable only 56 percent of the time. I waited nearly three years for a proper diagnosis which caused my condition to turn chronic and very hard to treat. Sadly, this is the case with many Lyme patients who often wait more than two and a half years and see seven or more physicians before a proper diagnosis. The only thing I want now other than to fully heal is to prevent others from going down the same long road I did.

It was four months after my Lyme diagnosis when I finally felt comfortable sharing my story publicly. I still don’t share my darkest hours, but I will happily share my journey to a proper diagnosis anywhere and with anyone. If one person can learn to trust their own instincts or order the proper test and start treatment sooner, then proclaiming “me too” was more than worth it.

Since then I’ve formed a group of Lyme warriors who have decided to tell their story publicly. Because Lyme is a complex bacterial infection that can affect each person differently, no two stories are the same. That is why I strongly believe in the power of breaking the silence and telling the story only you can. Knowing you are not the only one often provides a sense of relief and community in a time that can be incredibly lonely.

While no one experiences chronic illness in the same way, we can stand together in both our honesty and commitment to improving the outcome for others. And hopefully we become the silence breakers and trailblazers of our own community – paving the way for others to find their own answers, speak their own truth and find healing.


Find this story helpful? Share it with someone you care about.


Related to Lyme Disease

Friends smiling together.

12 Ways You Can Support Your Chronically Ill Friend

Facing chronic illness is a battle that lasts far longer than the common cold of flu. Chronically ill people have had to turn their whole life around as their worlds have changed – especially for those that face invisible illness. It’s hard for others to fully understand the extent of everything involved. Here are some [...]
A watercolor image of a woman on a swing.

The Truth About Living With Late Stage Lyme Disease

Many people have been asking how I am doing lately. And the short answer is, I’m fine. But the truth, the long answer, is actually quite complicated. I am writing this because there are others in the same situation as me. And we don’t really know how to answer this question. And sometimes, it makes [...]
A woman in the grocery store pushing a cart.

How One Stranger Went Out of Her Way When My Health Was Struggling

My story is short, but it had an amazing impact on my life due to a complete stranger. I have chronic Lyme disease with co-infections, which is basically bacteria and parasites all from one tick bite. I am disabled. Chronic Lyme disease is an awful disease that I encourage everyone look up and read about. [...]
A woman resting her head on her desk.

10 of the Worst Lyme Disease Symptoms

If someone would ask me what are the most annoying Lyme-related symptoms that I ever experienced, I would have a list ready within less than a minute. As a late stage Lyme disease victim, I experienced a lot of symptoms, mostly because my illness was not discovered on time. Thus I ended up developing neurological [...]