Happy Lyme Awareness Month! As you may have seen on Instagram, Case Integrative Health is making an effort to share the stories of our community through our Real #LymeFacts campaign taking place on Instagram and Facebook. By now, we know that while each patients story is incredibly different, their path to diagnosis is eerily similar.
Comedian and Got It From My Mama podcast host Tori Piskin has been the face of a National Facebook campaign, graced the pages of Glamour Magazine and starred in the New York Comedy Festival- but most people do not realize that she also suffers from Lyme disease. Tori and I connected on what it is like to live with Lyme, and living your life to the fullest, despite illness.
Q: Tick-borne illness can be one of the most complex diseases to be diagnosed with. Can you tell us a little bit about your lyme disease story?
A: The first time I felt off was after a workout, from what turned out to be Lyme disease. I thought maybe I just didn’t eat enough. A month later I was in my senior year of college, everything was amazing other than the fact that I was sleeping 13 hours a day, having weird headaches and then suddenly waking up with blurry vision. I remember telling my parents and at first they weren’t too concerned, but once I brought up blurry vision- like the true neurotic, supportive parents they are they immediately drove from NYC to Boston to pick me up. Shortly thereafter, I ended up at my pediatrician’s office (yes I was still seeing a pediatrician at the age of 21.) She tested me for Lyme and it came back positive. So I knew within a few months what I had. Luckily, I never experienced people not believing me, saying that it was not Lyme Disease, or going years with symptoms that were a mystery. It took an additional year to learn that I needed a much more intense treatment regimen than the 30 day “protocol” that the CDC recommends (like most of us do.)
Q: When I was finally tested for Lyme disease, I had never even heard of it! Had you ever heard of lyme before you were diagnosed?
A: I had never heard of Lyme disease before I was diagnosed with it. When I found out it was Lyme disease I was relieved. I remember walking across my college campus telling a friend, “it’s Lyme Disease” and her responding with “you’ll be fine. My dad had it four times.”
Q: When you were first diagnosed you were very active with sharing your story in a series of videos on YouTube that were picked up by Glamour Magazine. I know you took a break for some privacy for a while- and now you are back as an advocate. What provoked you to share your story again in 2020?
A: I decided to step up and share my story again, because I had a bit of a relapse two years ago. Sadly it led to a bad breakup that stemmed from my trials and tribulations with Lyme disease, and then I lost a very close friend due to my battle with my illness. People often use the word “flaky” with me and it really bothers me. Some people think I choose to have a flare up or cancel plans. I do not. I was very frustrated with this and knowing I had to apologize for something I can't control. This is when I thought, “I’m not the only one going through this,” whether it’s dealing with the fallout from Lyme disease or another invisible illness. I love getting to share my story in a serious, but comedic tone. All of my creative ideas come from a place of anger and frustration. Not sure if that is a comedian thing or a Lyme thing?
Q: You and Lulu (Tori’s mom) are a match made in heaven as podcast hosts for Got It From My Mama- when you were diagnosed with Lyme, did Lulu innately understand what you were going through?
A: When I first called her with my symptoms, which at the time were just fatigue, she kept telling me in her heavy New York accent “it was probably mono” which would make sense as I was a 21 year old girl in college. But, when my symptoms started to worsen, like having blurry visions- she became very worried. She has always been my biggest fan in comedy and in life. She always believed me with my debilitating symptoms. She never questioned if it was “all in my head or “just making things up.”
Q: One of my largest battles as a Lyme patient is dealing with severe dips in energy. Between hosting Got It From My Mama, being a comedian and everything in between- how do you give yourself grace on your hardest days?
A: People are often surprised when I tell them my biggest symptom with Lyme Disease is still fatigue. They are like “but you do so much and don’t stop talking.” I used to have a joke that when the tick bit me maybe it was their way of saying “can you shut up for one second.” When there are days when I feel tired, I just tell myself “okay today is your Lyme Disease day off.” I’m not going to feel guilty for not doing anything and just resting in bed. During those days off I’m bottling up my energy knowing that I’ll have a few busy days ahead of me. There is never any shame in giving your body what it needs!