“It’s really hard to sum up 15 years of searching for answers, of being told you are fine when your body is constantly screaming at you how you are definitely NOT FINE in all capital letters. 15 years of doctors appointments, invasive testing, missed days of school and events, of questioning where you fit in this world that is constantly telling you nothing is wrong with you.
The thing about our lyme stories is that they’re different, but somehow all the same. I first got sick when I was 9 years old. Overnight I was unable to keep any food down and had panic attacks so bad I couldn’t leave my bedroom or talk on the phone. I wasted away to almost nothing, my gaunt face a haunting reminder to my family that the bright, social, happy little girl that they knew was long gone.
I remember the underlying messages being constantly thrown my way – that whatever was going on was my fault. If I tried harder to go back to school or to not let my panic attacks control my every move, we wouldn’t be dealing with all of this hassle. I was threatened with scary and invasive testing that my parents and doctors would describe in graphic detail in order to try to scare me into going back to school. I could describe the entire procedure of an endoscopy before I was 10 years old.
It became apparent quickly that no one was on my side, not really. And what is a kid supposed to do with that knowledge?
After that there were a lot of “in between” years. In between times where my symptoms did not debilitate me, they allowed me to function but I was constantly paying the price. I developed an obsessive fear around food. Constantly catching infections like strep, the flu, mono, swine flu, and more. I missed an average of 30 days of school a year every year until I graduated high school, and that was me desperately trying to keep up.
The “in between” years were hard in their own ways. It wasn’t so blatantly obvious I was sick anymore. I returned to a healthy weight, my anxiety was mostly under control. I could pass as “normal” and sometimes that was almost worse. What I felt in my body wasn’t reflected on the outside and so no one ever believed me. They scoffed when I said that a 5 minute warm up jog made me almost pass out and throw up, that I physically couldn’t even fast walk a mile if I had a rabid dog chasing me.
I watched my peers performing and wondered what was wrong with me? I had to sit down in the shower sometimes.
Everyone I looked to for help always had an excuse. My pediatrician told me to drink more water, get more sleep, it was just growing pains. My gym teachers told me I was being dramatic. My mom told me nothing.
I ran myself into the ground so that I wouldn’t have to stop too long to think about how awful I felt every day. Towards the end of high school I tried seeking out help via specialists – rheumatology, neurology, pulmonology, and more – but none had any answers for me either. I continued on to college with the same struggles, although now it was all much easier to hide.
By this point I didn’t want to tell people how awful I felt, because it was embarrassing. It was embarrassing to not be like everyone else, to not be able to do the things everyone else could. I would rather make up an excuse and not go than admit that walking 12 blocks to dinner was just too hard for me. Inevitably, people want to know, “why?” and I was humiliated to not have an answer. Was I still just not trying hard enough?
After graduating college I moved to North Carolina to start my career, and that’s when things really went haywire. Unknowingly, I had moved into a house with high levels of toxic mold. The mold was able to weaken my immune system and allowed the underlying lyme and coinfections to take over.
At this time, I truly was fearful that I was going to die. I had no idea what was happening with my body and my symptoms were worse than ever.
During this time I wrote an email to various specialists across the country who worked with patients with rare diseases begging for help. I told them that “In the past month and a half, it has gotten to the point where I am almost completely homebound and fear that I will soon be bedbound. I am experiencing overall weakness, headaches, brain fog, urinary problems, nausea, EXTREME fatigue (I wish there was a more accurate word to describe it, it feels as though my brain just turns off), memory loss, other cognitive issues, dizziness, and more.”
I was desperate for help and answers after being hospitalized for 2 days and still only told that I had a UTI and needed to meditate. Told with a scoff and an eye roll that my severe memory loss and inability to stand up and walk to the kitchen without passing out was an anxiety problem.
But who wouldn’t be anxious after 15 years of being dismissed, questioned, ignored? I was 23 by now, an adult, and still not believable. Would anyone ever help me?
I struggled severely with suicidal thoughts. I wanted the pain to end more than anything and I didn’t see a world where that was possible. I was exhausted from fighting so hard and ending up in the same place.
Eventually, I received a mychart notification for a western blot test that they ran while I was hospitalized. A beacon of hope reaching out to me in the dark – a potential answer for my suffering. I researched about the disease and realized quickly that this was going to be a long and grueling battle. I made an appointment with one of the best LLMD’s in the country and never looked back.
I’ve been treating my lyme, babesia, bartonella, and mycoplasma for about 15 months now. I did 7 months of oral antibiotics combined with some herbals before switching to IV antibiotics combined with some other therapies. I chose my LLMD because I thought it was important that he used pulsed antibiotics in order for long term success. I’ve done 7 months of intensive IV treatment and am finally only starting to see some improvements.
The hardest symptoms to struggle with are the neurological ones. The memory loss is debilitating and exhausting. To not be able to remember your own life or to trust your own cognition is a feeling I hope most never experience. I have spent the past two years trying to rebuild my life and reaching for something I never really got to experience at all – a healthy body and mind. I’m hopeful that I’ll get there.”
Follow Caroline on Instagram @functioningtired