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How My Internship Gave Me Purpose While Living With Lyme Disease

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When I became sick with Lyme disease in September 2015, my life was seemingly put on hold. I was forced to withdraw from college just 19 days into my freshman year. I didn’t have a job and my lack of stamina barred me from getting one. I was unable to care for myself, unable to shower or walk to the bathroom without assistance and so was forced to move back home with my parents.

Back then, as my life was falling apart at the seams, I never could have imagined that one year later I would have an internship with an organization I love.

Because in the months following my diagnosis, my neurological symptoms became worse and I lost more and more of my abilities. I was no longer able to read or write. I began losing my memory. Some days I didn’t even have the strength to hold my body upright long enough to make myself a sandwich for lunch. The idea that I would be mentally capable of carrying out the tasks an internship would require was laughable.

This fact was further confirmed after I began seeing a Lyme-literate doctor in December of that year and started antibiotic treatment for Lyme, Babesia, and Bartonella. Almost overnight, I experienced a Herxheimer reaction. A “herx,” as it is commonly referred to, is a detox reaction experienced when one starts killing off the bacteria. I started feeling even worse, if that was possible. My muscles ached like I had just finished a marathon, my heart rate skyrocketed as I experienced bouts of tachycardia, headaches so painful I cried, and night sweats that would leave my bed sheets soaked when I woke up every morning. Compounded with my neurological symptoms, I was completely debilitated. At this point, I could do little more than sit still and watch TV to try and distract myself from the pain.

And so I disappeared into the monotony of illness and my days became routine, very little to differentiate one from another. I could go through each on auto-pilot, sleepwalking through the motions. Each one would seemingly bleed into the next. The weeks were a blur and months would pass in the blink of an eye. I was existing, not living.

What was most difficult for me was this feeling of time passing me by, of precious moments being lost with nothing to show for it, but the indent my butt left on the sofa. As someone who was used to being productive, watching days slip away without what I considered reasonable “accomplishments” was incredibly challenging. Seeing my peers having the opportunities and experiences I had dreamed of, like starting new jobs and internships and studying abroad, made it even more painful. I felt jealous that I didn’t have anything meaningful to pass my time with or any goals to set and reach.

The longer the battle with my illness dragged on, the more acutely aware I became of this gaping hole that had been left in my soul by the lack of creative, educational and personal fulfillment in my life. I was desperate for something to fill this void. This became especially true as I began to notice some slight improvements in my overall health. After beginning IV antibiotics in March 2016, I finally began to feel a difference. I felt drastic changes in my physical symptoms and after six months, save for some fatigue, they were gone. And while I still had to contend with dizziness and brain fog, I was slowly beginning to somewhat function beyond my neurological symptoms. Feeling physically “normal” made it even more difficult to remain sidelined. I was feeling restless and needed something to fill the emptiness I felt, to renew my sense of purpose in the world. Little did I know that this was exactly what my internship with Suffering the Silence would do for me.

Suffering the Silence, or STS, is a non-profit organization dedicated to using the power of art and storytelling to raise awareness surrounding the life experience of those living with chronic illness and disability. It was founded by Allie Cashel and Erica Lupinacci, two young women who struggled with chronic illness themselves and recognized the need for this type of supportive community and the positive impact that could be made by encouraging patients to become self-advocates and share their stories.

I first became involved with STS in September 2016 when they offered to publish one of my personal essays about illness on their website. Through this opportunity, I experienced firsthand the importance of breaking the stigma and the silence surrounding chronic illness. I saw the people I could touch with my words and felt the power that comes from taking control of your own narrative. I instantly became inspired by the work they were doing and it was such a positive experience, I knew I would jump at the chance to work with them again.

So, when STS began looking for an intern less than two months later, I knew I had to throw my hat into the ring. I submitted an application by the end of the same day the announcement was made. Just three weeks after expressing my interest, I was invited to join the team as their Programs Intern.

The position was a remote post, meaning I could do my work from anywhere. While I would have the option to attend in-person events the organization held, it wasn’t required that I commute to an office every day. Knowing I would be able to do my work from home, sitting on the sofa and in my pajamas if necessary, made me feel less worried about my symptoms getting in the way of completing my assignments or of a stressful work environment causing a flare-up. Having the freedom to mostly dictate my own hours, allowing me to work assignments around doctor appointments and treatments was a huge plus, too. I also had the understanding and support of the people I was working with, all of whom were struggling with their own chronic illnesses and were therefore sympathetic to my plight. I knew if I told my boss I was having trouble finishing a blog post due to brain fog or if I needed a few days off for IV treatment, she would understand because of her previous experience with Lyme. All these aspects made it easier for me to feel confident taking on my new role.

I could not have imagined back then when I first started all the experiences I would have and everything I would learn in my time with STS. In the past 11 months, I’ve written over half a dozen articles for their blog and had the opportunity to share my writing with the chronic illness community. I’ve learned how to manage donor relations and been shown the different administrative tasks necessary to run a non-profit. I have helped to plan multiple events across several different cities and felt a sense of pride seeing each of them come to fruition.

But perhaps even more important than the tangible accomplishments listed above are the ones that are less measurable, the ones I can’t put on a resume. And that is the fire this internship has reignited inside me.

After being diagnosed with a chronic illness, I lost my sense of purpose. I forgot how it felt to have direction and what it meant to take on responsibility. I began to accept feeling useless and resigned myself to a future without meaningful aspirations.

My internship restored these original feelings that had been lost. It gave me a sense of value and personal worth. It provided me with the opportunity to make an impact and rediscover my role in making the world a better place. And it continues to remind me that I am still capable of more than I realize.

When a new assignment from STS comes to my inbox, I am energized and excited to tackle a new project and it takes my mind off my current battle, even if only momentarily. And, on bad days, knowing other people are counting on me gives me a reason to get out of bed.

Being a part of an organization that connected me with other individuals living with chronic illness has also helped me to break down the wall of isolation that illness can build and succeeded in making me feel less alone amid my struggle.

I often say that this internship saved my life. And I truly mean it. It didn’t heal me of my illness; I still deal with the effects of Lyme every day. All the tasks I have completed, each blog post I’ve written over this past year has been done while contending with daily neurological symptoms. But this experience helped me to look beyond my daily struggle and reminded me of all I have to offer the world. It helps me to remember that just because I have a chronic illness doesn’t mean all my positive skills and attributes are negated.

I will forever be thankful for Suffering the Silence, this internship and the sense of direction it offered me when I felt most lost.

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Originally published: November 29, 2017
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