Living with chronic Lyme disease

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Living with chronic Lyme disease

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For years I didn’t know what was wrong with me. Doctors, rheumatologists, therapists, they all thought they could diagnose and fix me. I was put on medication for my constant headaches and went to physical therapy for my joint pain. I was diagnosed with anxiety, OCD patterns and was put on antidepressants.

I was discouraged and angry at my body. Living in pain everyday was my normal. But this all changed when I received the results back from a blood test.

Lyme disease — an illness caused by the bacterium Borrelia burgdorferi that is transmitted most commonly through a tick bite.

I remember feeling equal amounts of relief and disappointment. A diagnosis meant I could do something about the pain I was feeling. On the contrary, lyme is a complicated illness and I didn’t know what my future looked like. I was diagnosed many years after I contracted the disease meaning my lyme was chronic and treatment would be much more elaborate than someone who had been diagnosed earlier.  

After being diagnosed I started reading about lyme. My mom bought books written by lyme-literate clinicians and I turned to the internet as well. I read about lyme’s five co-infections — separate, simultaneously occurring infections with additional symptoms. I read other people’s personal stories and treatment plans. I soon learned just how complex this illness is. I felt scared because I didn’t know the extent that lyme could affect me.

Eighth grade and freshman year I was feeling well with minimal symptoms, without rigorous treatment. This is because I was in remission, which means I wasn’t experiencing symptoms as severely or at all at that time. But this doesn’t mean I was cured. People with lyme can go years feeling good and then have a flare of symptoms.

At the beginning of sophomore year my lyme flared up again. All of a sudden I started struggling with fatigue most days, my brain fog was the worst it had ever been, and a catalogue of other symptoms appeared. It was a reminder that my body was still sick and would be for the rest of my life.

Needless to say, my frustration returned. Being at peace with a body that isn’t working the way you want is hard. But, instead of giving into the discouragement like I have in the past, I have been trying to take a more compassionate approach with my body.

On some days this is so hard. It’s easy to feel as though my body is fighting against me when in reality it’s trying its best to support me despite being attacked.

I have started listening to what my body actually needs, not just what I want it to need. If I need to sleep throughout the day instead of doing something more “productive”, that’s okay. It means my body needs extra rest and I shouldn’t feel guilty about that. Healing isn’t linear, it involves good and bad days which are both part of growth. People I have found on social media help reinforce this healthy mindset.

Through social media platforms I have been able to reach out to others who struggle with chronic illness and learn from them. My acceptance in my own healing process can be largely attributed to people I have found online. Although I have a very supportive family it was reassuring for me to see others facing the same things as me. With such a random assortment of symptoms that many people don’t understand, it’s easy to feel a bit crazy. Reassurance comes from others who understand and shine light on the dark parts of lyme that people living without lyme don’t always see.

A lot of symptoms, especially neurological, are easy to hide but still affect me. I have a hard time remembering simple words I used to be able to recall quickly and my short-term memory has been impacted. I am often frustrated during conversations when I continue to forget what I am saying and jumble my words.

Hidden struggles have their up and downsides. I am lucky that I haven’t had more physical effects like partial paralysis or major vision loss but I have found that because I don’t necessarily physically show symptoms, often people don’t believe me or think I am exaggerating the truth. This is infuriating but at the same time inspires my aspiration to spread awareness about lyme even more.

Lately I haven’t felt close to perfect. I have been struggling with blood pressure and heart rate regulation and I still work to overcome neurological symptoms everyday, but I am managing. I feel so lucky that I am still able to attend school and other extracurricular activities; I know of many lyme fighters who cannot.

I hope writing this can at least put a face to what lyme can look like. With that said, I also want to note that there are so many symptoms I have experienced but didn’t write about. Either they felt too personal or it would have required a lot of background knowledge about lyme to fully understand. I hope this just goes to show how complicated this illness can be.

From how long the process of getting a diagnosis can be to what symptoms and co-infections they deal with, everyone’s story with lyme is different.

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