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Unwell – my 10-year journey to my Lyme disease diagnosis

My mystery illness (Lyme disease) snuck up on me in the fall of 2007. I was 16 years old and chronic illness was not something I often thought about. A bubbly, bright, optimistic class clown, I was heavily involved in my school and small-town community in rural Washington state. I was the captain of the cross country team and was adequately bright, with a love of painting, musical theater, and playing in the jazz band.

I went to bed one night and woke up the next morning exhausted. This was a new feeling for me. Vowing to go to bed earlier that night and spend less time on Myspace, I went right to bed after school. Guess what? The next morning, I woke again feeling like I had not slept. Little did I know, that would be my new normal for at least the next decade.

Doctors can fix this, right?

After about a month of this, I started getting new symptoms. I was having heart palpitations and struggled to go up a flight of stairs without getting them. My body was exhausted. Everything felt like I was pushing a boulder up a mountain. My usual healthy appetite was gone, and I couldn’t stomach most foods, yet I gained 40 pounds in a month. I was miserable, and my body was screaming for help. Not knowing what to do, I turned to my doctor for help.

After several blood tests, mostly everything came back normal, except a positive test for Epstein Barr Virus, otherwise known as mono. The doctor told me to rest, and we all went about our daily lives again. I continued attending school, dropping most of my extracurricular activities. Spending increasing amounts of time wormed out in my room, I felt still felt hopeful that this would pass soon and I would return to my normal life functions.

The exhaustion continued

By the spring, my fatigue had not lifted. I felt so out of it and sick all the time. My body would freeze and I would be shivering, then half an hour later I’d be on fire. My photo from my 17th birthday shows a teenager with sunken eyes bundled up indoors with a winter hat and several outer layers. Not knowing what to do, we turned yet again to the rural hospital in our community.

Many who struggle with chronic illness know this story so well. The doctors took blood tests, yet everything came back normal. “Do you eat right and exercise?” they asked me. “I used to,” I thought to myself. They sent me home without further tests, saying that my mono was cleared up and sometimes it “just takes a while” to feel normal again. I still clung on to hope for a remedy, that one day I’d wake up and it would be gone, as quickly as it came.

The ever-changing symptoms of Lyme disease

A few years passed. Miraculously, I graduated from high school. Not knowing what to do with myself and refusing to stop living my life because of this horrible disease, I enrolled in college. My first year of college was by far the most difficult year of my life. The symptoms I had for the past few years (fatigue, chills, heart palpitations) continued. Now, I had new symptoms, including brain fog and a constant headache that felt like my brain was pushing my skull.

When you’re chronically ill, everyone wants to know what your illness is. If you don’t have an answer, nobody takes it seriously.

One day, I forgot what a “fork” was. I had to re-learn the word. It just slipped my brain and was nowhere to be found. I called it a “stabby food thing”, which would have been hilarious if I wasn’t so miserable. Holed up in my dorm room, I couldn’t socialize like my peers. I slept most of my time and skipped many classes. Sometimes, I asked my friends or roommate to physically pull me out of bed. I was embarrassed and didn’t know how to talk about my disease, especially since I was undiagnosed. When you’re chronically ill, everyone wants to know what your illness is. If you don’t have an answer, nobody takes it seriously.

Medical gaslighting

Uninsured but still hoping and optimistic for answers, I visited the campus health center. Now, a more educated and adult me knows this was a bad idea. At the time, though, I thought they could really help me find answers. My symptoms were changing again. I was having kidney problems now almost constantly, in and out of urgent care for horribly painful kidney infections. My palpitations were scary. Now, they were happening when I was at rest. I was depressed about my situation, but I wanted a healthy life.

The doctors ran all the same tests again. And, yet again, the results came back negative. I had a slow, strong heart rate and appeared to be healthy by all accounts. Crying in the doctor’s office, I didn’t know what to do. “Maybe you should consider seeing a therapist at the mental health clinic next door,” the doctor said to me. “I’m going to write you a prescription for Prozac. I think you’re depressed.” “I’m not depressed!” I yelled in my head, “this situation is just depressing!”

C.C. Leonard in 2009 and struggling with undiagnosed Lyme disease
2009: the year I was told it was all in my head

That was the lowest day of my life. It was so clear to me that nobody took my disease seriously because of a lack of evidence. The fatigue and brain fog – everyone just said I was too young to have that. “I stayed up all night last night, so I get it,” my friends would say. “No, you don’t get it,” I would think. It hurt the most, however, when doctors clearly did not take me seriously because I wasn’t laying in a bed all day and refused to stop living as a result of my disease.

A cross-country move and symptom change

After college, I had a small period of fewer symptoms. I felt okay, not great, but okay. I still had fatigue, but it was my normal and I was used to it. The headache was gone and I wasn’t having as many kidney infections. I was able to do most things without this illness interrupting things. For the first time in years, I was optimistic that I could someday maybe kick this illness that had plagued me for so long.

I decided I wanted a clean start and packed all of my belongings in a car and drove to North Carolina. It was thrilling. I thought I was going to die so many times in my late teens and through college. A future didn’t even feel possible – I didn’t even think I’d make it past 23. Now here I was going on adventures and moving to a new state! It was the time of my life, moving to North Carolina.

All of that changed 2 weeks into living in my new home. I woke up one morning and couldn’t move my fingers. They were so stiff and sore. I was working as a waitress at the time and just started sobbing. “What am I going to do?” I cried into the phone while talking to my mom. “I can’t move back! I’m trying to finally live my life. I need these hands to work!”

Naturopathy, inflammation, and food sensitivities

Completely untrusting of modern (western) medical doctors at this point, I sought help from naturopathic doctors. At this point, I didn’t care about a diagnosis, I just had to get my pain under control. I couldn’t afford too many sessions with a naturopathic doctor, but I did go to one who clued me in on the relationship between gut health, stress, food sensitivities, and inflammation.

He suggested I go gluten-free and remove nightshades from my diet to see if that would help my arthritis, and it did, a little. It did enough to not go to sleep crying every night. I was gluten-free for over three years. It worked for my inflammation until it didn’t. This was a few years ago, in 2017. I decided to consult a nutritionist, who gave me a food sensitivity test and I worked on improving my gut health. I also started going to an acupuncturist, who helped my arthritis significantly. Still undiagnosed, I was happy with being in less pain.

C.C. Leonard at a roller derby tournament in 2016.
2016: still undiagnosed and in pain, but living life as fully as possible

Fate diagnosed me with Lyme disease

It was by pure fate that I got my Lyme disease diagnosis. In 2017, I was doing my hair in the morning and saw a pale green bump on my arm. Not wearing my glasses at the time, I thought it was a pimple or something (I know, gross). When I went to pop it, I literally felt little legs digging into my skin (I know, even more disgusting). I FREAKED out. It was a tick. My husband helped pick it out and, fearful of having yet another disease, I started searching for symptoms of Lyme disease.

Lyme disease was something I had heard of before and something I knew was related to ticks. Beyond that, I literally knew nothing about it. Searching on WebMD, however, I was absolutely flabbergasted. I threw myself on the ground with the computer reading through the symptoms. This is what it has been all along I thought to myself. This is it, this is the answer I’ve been looking for.

Lyme disease comes in 3 stages. I had almost all of the symptoms in each of the stages. My experience had been in the perfect timing of what is typical of these stages. I was in absolute shock reading this. Everything had been perfectly placed here all along. The hours I spent scouring the internet for answers, all those tests I took, all the doctors who dismissed me. The answer was right there, why did nobody see this?

The Lyme disease test

My elation at finally finding what was wrong with me for so long was met by pure horror of finding that it was a very controversial disease. Lyme disease is arguably one of the most political diseases right now. Experts, patients, and governments are seemingly at odds with what it really is, how to diagnose it, how to study it, who really has it, etc. I didn’t even know a disease could be political.

Wanting to prove that I was right in my self-diagnosis, I went to a doctor to get a test done for Lyme disease. It’s sad that our medical industry makes it so a patient has to literally fight for everything. I came in with a print out of Lyme disease symptoms and a list of all the symptoms I had with a timeline, just in case. Fortunately, I went to a doctor who was not a total douche and immediately accommodated my request for a Lyme disease test. The Lyme disease tests are also extremely controversial and infamously unreliable, but I got a positive diagnosis. My doctor prescribed me with antibiotics, which burnt my skin and made me absolutely miserable. And all was well!

C.C. Leonard 2 years after being diagnosed with Lyme disease
2019: two years post-diagnosis, exploring and taking one day at a time

Post-Lyme disease life

Just kidding, all was not well. Everything was just okay. It’s been over 2 years since my diagnosis and treatment and not a day goes by where I don’t think about my illness. I think about how poorly I was treated by doctors, how I was so easily dismissed when I knew I was so sick. The amount of pain I’ve endured over the years because of this disease, both physically and mentally, has been incredible.

I always fantasized about finding the diagnosis, popping a few pills for a while, and getting back to perfect health. The truth, though, is that I will never be fully healthy again. I have arthritis now. It’s managed through acupuncture and diet, but I have it. My heart has a murmur and I still have palpitations. My memory is permanently damaged and, at 28 years old, I have to write everything down for fear of forgetting it. Oh, and my original symptom of fatigue has never fully lifted.

The only positive light in this whole ordeal with Lyme disease is that I’m now able to share my story. I share because I think about someone out there just like me, going through everything I did. If I could help them get diagnosed faster and spare them the suffering I went through, I would be elated. There are so many people out there silently suffering from something they don’t have a name for. I’ve learned so much through this experience and, while I wish the outcome was different, I am thankful for what I have learned.

The future of Lyme disease

Lyme disease and other tick-borne illness rates have been increasing rapidly over the past decade. I wrote a few months ago to my representatives to advocate for the Kay Hagan TICK Act. This bill, if fully passed, will help aid in the funding for research, treatment, and awareness of these diseases. We are needing action and for patients to be heard, respected, and treated at an adequate rate. I will continue fighting to advocate for Lyme patients and hope that places like the Johns Hopkins Lyme Disease Research Center can help find a cure.

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