I was first diagnosed with Chronic Lyme Disease when I was 15 years old, my sophomore year of high school. I remember being diagnosed only a couple months apart from my mother, who also tested positive for Chronic Lyme. Unlike many, my Lyme story doesn’t involve a tick bite (that I know of). Lyme specialists believe that I contracted the disease in my mother’s womb, which explains why I had such an odd childhood. My mother and I don’t share the same co-infections though, making our cases very different symptom-wise.
I remember seeing doctors for my weird aches and pains growing up but no one could ever help. I knew I was in pain, but no one could ever figure out what was causing it, so doctors sent me away with various braces for when the inflammation got too bad. This feeling of isolation started early on in my life, always in pain but never having a solid reason. Always upset but unable to pin point my feelings, which would then spiral into a panic attack where I would lay immobile on the floor yelling and sobbing, wishing I were dead. I hated myself for what I thought I was. I hated myself for feeling horrible. I was so hard on myself growing up, that even after testing double positive on the blood tests, I still struggle to be patient with myself on days where Lyme takes over.
In high school I took numerous pills a day, a mixture of antibiotics and supplements to help build up my immune system. My mom would pack them in with my lunch whenever I went to school. I always got strange looks when the bag of pills would fall out of my lunch bag and onto the table. I hated taking them. They made me feel worse than I had before, but the doctors told me this would happen. They called it “Herxing” which essentially means my body is fighting the nutrients being pushed into it, and with time I’ll feel better. Not only did it physically hurt to take them, but mentally as well. I always thought of myself as weak, or stupid for having to take all of the pills I took. High school was really hard because of that. I tried hard to keep relationships with my peers, but there were times I couldn’t be fully present because of how I was feeling. I felt like I was living a completely different life than those surrounding me that social interactions almost felt like I was lying. Looking back I often wonder what was Lyme and what was actually “Abigail”.
Freshman year of college came and I saw a new Lyme specialist out in Pennsylvania, only about an hour outside of Philadelphia. He continued to prescribe the antibiotic treatment for me while I was living in the dorms. I did the bare minimum to take care of my body, until second semester where I realized I couldn’t just slip by. Luckily, I had amazing friends and teachers who supported and loved me unconditionally, which really helped. I continued to take my pills (on time), exercise, and eat right in the hopes of in going off treatment before my second year of school.
Finally, I went off of the heavy antibiotic treatment in August, feeling better than I ever had in my short 19 years of living, and moved into my own little apartment in the big city of Philadelphia. I was going to school out there as well as working to support myself. Everything was great. I was great. I have such a spotty memory as to when I realized I wasn’t myself, but soon enough the crippling panic attacks, horrible depression, swollen glands, flared joints, and the brain fog all returned. For days I would walk through the motions, pretending to be fine. I wanted to be fine; I forced myself to be fine. Eventually it built up to the point where I couldn’t walk through the halls of my school without bursting into tears. I wanted to die more than anything. I was lucky enough to realize that these were in fact symptoms I had experienced before, and I took long strides to remind myself that this is my illness, not me. I tried very hard to be patient with myself while my body was not my own, but I couldn’t handle it on my own. I am so grateful for the teachers, friends, and peers that took the time to help me get help. Again, a lot is very spotty in my memory, but I wouldn’t have made it home safe without them. I finally got the strength to ask for help, and asking for help was the hardest thing I’ve ever done. Admitting that I was not ok almost broke me. I am now living at home with my parents where I can put my health first and let my body rest.
I didn’t want to go back on meds; I saw it as failure, as a huge leap backwards. But I am coming to terms that it indeed is NOT failure. It’s just how things are right now. I am learning to accept that I have a chronic illness, instead of ignoring it. I am learning how to live WITH it, instead of fighting it. I am learning not to defy myself as my illness, but to recognize that I have it. I am learning to have patience for my body instead of lashing out in anger for feeling ill. I am learning & growing everyday.
I want to help bring awareness to Lyme as well as other chronic diseases that don’t get the attention they need. It breaks my heart that so many people are living lives similar to mine, but never ask for help because they’re afraid. I feel so strongly for everyone living with pain, physical or mental, and hope that in sharing my story awareness is made.
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