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Why Turning 30 Was the Right Time to Share My Lyme Disease Story

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In July 2014, my hair began to fall out — first in small strands and then by the handful. By September, I could not longer climb stairs. I rapidly lost most of my mobility, was unable to stay awake and found myself getting sick with every bite of food I took. The physical pain was indescribable, but the mental exhaustion of watching your body decay is a fate I wish on no one. Like so many before me, I was shooed away by a dozen doctors. I was told I was depressed and anxious. Told I didn’t need medical testing, I just needed therapy.

In 2015, I collapsed while walking to the mailbox just yards from my front door. That day, on the ground, I remember mourning the life I had planned for myself and felt the deep pain of not knowing if I would see my 30th birthday.

That summer, I met the first doctor who believed me. By the time I reached her office, I was riddled with pneumonia and infections and barely able to walk. I spent months on IVs, just trying to keep weight on as I dwindled to a meager weight.

In June 2016, after a full year of tests and doctors and tears and anger, my doctor sat me down to tell me I had Lyme disease.

I cried in a way I had never cried before — not out of fear or sadness, but out of pure relief that, for the first time in the darkness of my experience, I was told my pain was valid. I was told I wasn’t “crazy.”

I spent two full years in treatment. I lost count of the thousands of needles that were pressed into me. I was taking 42 pills a day and eating the bare minimum to keep myself alive. I had two major surgeries and lost two organs. I slowly began to have more good days than bad and then I relapsed hard. I needed a wheelchair any time walking was required. I endured the dirty looks as I used the disability parking spots.

In October 2018, my doctor tried her “last resort” treatment. By Christmas, I was starting to tolerate food again, I could climb the stairs in my house without crawling, and by February I had enough energy to last a full day on my feet.

In March 2019, I was told for the first time in four years that my bloodwork was normal. I was in remission. I was healthy.

I once read a similar story to mine in which the author said she was grateful for her illness. I remember being so angry at that. How could you be grateful for so much misery and pain? But she was right. I stand here today, healthy and grateful. Because of my illness, I don’t take my life for granted. I am kinder to myself and to others, I appreciate everything I have, and I love harder than I ever did before.

I have stayed silent about my illness for four years. The judgment and hurtful comments that come with Lyme disease were unbearable. This summer, I stood side-by-side with another amazing Lyme warrior as we testified to the House of Representatives about stricter Lyme policies in the state of Michigan. I learned my voice is a powerful tool and I want to do everything I can to make sure others don’t fight alone.

Today (at time of writing), I turned 30. I made it. I wish so much I could reach back to that girl on the ground and tell her everything would be OK. I’ve spent the last few months working hard to regain my strength and pushing to physically feel like the warrior I’ve always been. Lyme disease is so much more common than we think. Lyme disease, if not caught early, can be disastrous and even fatal. Lyme disease is forever, but the suffering doesn’t have to be.

I’m sharing my story today because we need to raise awareness about the devastation of this disease and the treatment of those suffering.

Treasure your health, your life and your body. Be kinder and love harder and know that whatever your fight is, you don’t have to fight alone.

Photo by Erik Brolin on Unsplash

Originally published: September 30, 2019
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