“8 years ago, I knew very little about Lyme Disease… I was living outside of NYC in a little town in Connecticut. I was oblivious to the fact that Lyme Disease was becoming an epidemic in the Northeast (and, really, worldwide.)
One morning I felt an itching sensation on my stomach and noticed a small black spec on it. When I’d scratch it, it wouldn’t move so I, of course, became panicked. I ran into my boss’s kitchen and he looked and said, ‘That’s a tick!’
He removed it with tweezers, and pretty sure for the rest of the day I felt like ticks were crawling all over me. I took Doxycycline for two days and thought I was in the clear and would be fine. Fast forward 3 months later and I became deathly ill. I ended up at an Urgent Care and they tested me for a handful of things, one being Lyme Disease. The only issue was I wouldn’t know my results for a few days, and we were heading into the weekend.
Two days later I ended up in the ER because my right side of my face, arm and back went completely numb, and I was throwing up. I knew something was really, really off… I was finally released and went home and didn’t leave my bed for two days. Finally, Monday morning I got a call from the Urgent Care and they said, ‘You tested positive for Lyme Disease. You need to come in so we can get you on an antibiotic.’ I was then prescribed two weeks of Doxycycline and I actually felt a huge difference within just a few days, so I, of course, thought that was it and I would go on with life.
Lyme Disease said, ‘Not so fast…’ Within months I started having the same symptoms creep back into my life. I remember riding the train into NYC one morning and I felt like a stranger was living in my body. I didn’t feel like myself… I felt like my world was constantly spinning, I was beyond exhausted, no matter how much I slept, and I often found myself wearing sunglasses because the light bothered me so much. Before this I didn’t even own a pair.
I felt like my health was progressively getting worse, so I got in to an LLMD (Lyme Literate Medical Doctor) in Westport, Connecticut. We did further testing, and I was still testing positive for Lyme Disease along with two other diseases, Babesia and Bartonella. I immediately started 4 strong antibiotics along with several other medications. Within days I started having a severe herx reaction (the die-off is very toxic in the bloodstream) and I ended up in the hospital several times. Before Lyme Disease, I had been to the ER once in my life for a cut on my hand.
I felt like my life was over… I went from staying out late in the City every weekend with friends to barely being able to leave my bed and having to move back to Idaho.
My life revolved around taking my meds and getting IV’s for hours on end. There was one point where I was getting 5-6-hour IV’s 4 days a week. I withered down from 125 pounds to 102 pounds within 6 months. I began to wonder if I’d ever feel like my old self…I longed for her and cried for my old life often.
Even though I was surrounded by such a supportive and loving family, I felt so alone. I felt guilty that my Mom often had to drive me to my IV’s and sit with me for hours. I felt guilty if my Dad would sit up with me late into the night if I was waiting for my IV to finish up. I felt guilty that my parents had to spend thousands upon thousands of dollars for treatment, since insurance companies wouldn’t cover any type of medical treatment for Lyme Disease. And I felt guilty that I would often tell my friends I couldn’t hang out when I said I would. I felt like I was letting everyone down around me.
If you’ve ever suffered with an invisible illness you know how lonely and depressing the journey is…On the outside you look normal to the world around you, but nobody knows the weight you are carrying. Nobody knows that you literally plan out every minute of your life so you can function for the big events that come up. Look up the spoon theory… it explains it perfectly.
Over 300 million people worldwide suffer from depression. Anxiety disorders are the #1 mental illness in the country. And over 50 million Americans suffer from an autoimmune disease. These are all invisible illnesses… things we battle every minute of every day. It’s exhausting at times to put on a brave face and act like everything is fine. If you know somebody who has in invisible illness, be patient. Ask how they’re doing. By never acknowledging their illness, you’re sending the message you think it’s all in their head. Be understanding if they have to cancel last minute. A lot of times we don’t even know how we will feel from hour to hour. Study and learn about their condition… I think that’s the number one way you can show support.
Even though getting Lyme Disease was one of the toughest things I’ve ever gone through, it’s also taught me a lot of life lessons. I’ve learned I’m a lot stronger than I thought I was, and I can push through the hard times, even when it seems impossible at times.
I’m not the person I used to be over 8 years ago… I’ve come to grips with that and I realize my new normal is nothing like my old normal. I just have to feel grateful that I am alive. I have a loving family, a supportive Husband and a beautiful baby boy. I have so much to be grateful for.
If you are fighting an invisible illness, I see you, I believe you, and never stop fighting.”
This story was submitted to Love What Matters by Jenna Richards, 33, of Lehi, Utah. Follow her journey on Instagram here. To learn more about Lyme Disease and where you can find a LLMD in your area, visit www.ilads.org Submit your story here, and subscribe to our best stories in our free newsletter here.
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