Nikole’s Story
Nikole, Artist in Philadelphia
“One of the hardest things about being chronically ill and living with Lyme disease is that most people find what you’re going through incomprehensible. In your loneliness, and your preoccupation with an enduring new reality, you want to be understood in a way you cannot be. ‘Pain is always new to the sufferer, but it loses its originality for those around him. Everyone will get used to it except for me.’⠀
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I read that in a New Yorker article about illness in 2013 and never forgot it. I felt less alone. I’ve been battling Lyme disease for seven years, and the symptoms still feel new every single morning.
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Seven years ago, at the start of my career as a hair stylist, I was full of drive and passion for my job. But I started to experience symptoms that I was completely unfamiliar with: neurological issues, pain, crushing fatigue, and weakness. I was getting sick more often, having to take off work far more than I was comfortable with. I had no idea what was happening to me, nor could anyone around me comprehend it. This went on for two years, undiagnosed.
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I had endless hospital visits and doctor’s appointments. I was given no answers, other than anxiety medication prescriptions. Finally, after no help and or answers, I started to do my own research. I learned that I had to advocate for myself in the face of medical ignorance.
I found Lyme disease to be what made sense of all of my ‘invisible’ symptoms. I was hiking in the woods nearly every week, but I never thought about this disease or the severity it could lead to. I booked an appointment with an LLMD/functional medicine doctor, and this was my first experience with a doctor who said, “Lyme or not, we will get to the bottom of this.” For the first time I felt heard and encouraged. Sure enough, I got my diagnosis of Lyme, babesia, bartonella, and a strain of pneumonia. This was a halting moment for me.
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At the time, I was so ill, but I remember being so full of joy to have finally received a diagnosis for the mystery this illness kept me in for years. I group texted my friends, co-workers, and family exclaiming the news. Though I had so much joy from receiving a diagnosis, the battle with these debilitating, invisible symptoms persisted. I cannot speak from a place of remission just YET, but I can say I’ve come a long way from my beginning, and I do know that healing IS possible.⠀
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Working with a great LLMD has gotten me out of the bedridden place I’d once been in, and functioning day to day. You learn to appreciate good days, and to accept the bad ones. And while I cannot say I’m grateful for an illness such as Lyme disease, I can say I’m grateful for the lifestyle changes that it has instilled in me. I’m grateful to be in tune with my body, and to know what it needs or doesn’t need in the moment. I think that’s a critical part in healing. Today, I prioritize my health, and I don’t take it for granted.”
Stories reflect the experiences and perspectives of the individuals featured and are not intended as medical advice.
