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Where to begin?

I remember being 8 years old, sitting in my room, hearing the neighbor kids playing and laughing outside late at night when I had to come in early. Growing up sick, I was forced to see the world in a different way than my peers from an early age. Everything about my life, my perspective, and my identity became different. If I had known when I was a young girl just how much my life would continue to change, both for the better and the worse, I would be overwhelmed, not sure how in the world I could handle such a big illness for so many years. What’s amazing, however, is I did handle it, and I would be nowhere close to remission today if I didn’t take each step I took along the way, no matter how difficult.

Lyme - The first time

At the age of 6 years old, I started to display a variety of concerning symptoms that raised flags for my parents that something was going on health wise. Intense body pain and aches, energy spurts followed by fatigue, brain fog, you name it. My incredible mom (who is my health hero, by the way) dedicated all of her time to figure out what was going on, and how to best help me. With her dedication and passion for helping me get better, she researched all of my symptoms, called doctors multiple times a day, and after a long journey, got me to a doctor who diagnosed me at the age of 7 with chronic Lyme disease. Following my diagnosis, my childhood looked a little different than that of my peers. Growing up in Ridgefield Connecticut, not many people knew what chronic Lyme disease was yet, and many people didn’t understand it, including friends and family, so they chose to ignore it. I was often isolated by teachers who questioned my condition, felt ostracized at birthday parties when I couldn't eat the cake being served, and overall, felt different, on top of being sick. I missed nearly half of the second grade, and caught up through home tutoring. I was taking up to 65 supplements a day. My symptom list was growing to over 30 symptoms a day, where some days the pain was so bad I would need to be pushed around in a stroller, crawl, or have my mom carry me to get around because I couldn’t walk. My family moved to Portland, Oregon in 2009, and the path to healing started to seem a little more bearable. We found an incredible Lyme doctor in Seattle, and once a month my mom would take me to go see her, driving to and from Seattle in just a day. I started to go on and off rounds of antibiotics for treatments, and also saw a naturopath so I could treat my illness holistically. At the age of 12, I became healthy enough to make the Junior Blazer Dancers, a dance group who would perform at home games for Portland's NBA team. At the age of 13, I hit remission for the first time. I couldn’t have gotten to remission as quickly as I did, with how sick I was, without my amazing support team behind me. To my doctors, who put all of their time and energy into helping treat me, to my brother and my dad, for always making me laugh during the toughest years, and to my mom, who dedicated her entire life and career to healing me and advocating for me, I thank you.

Lyme - The second time

Remission was incredible, but short lived. For 3 years, I was able to live the life of a fairly “healthy” teenager. However, one of the biggest triggers for chronic Lyme disease symptoms is stress. In those few years in remission, I experienced bullying at my high school, was in two toxic friendships, and struggled mentally because of it. Eventually, the stress caught up to me, and in my junior year of high school, I relapsed. I was devastated. I knew at that moment that the rest of my high school experience would look different, and I would feel even more isolated from my peers. With my symptom list beginning to grow again, I went back into treatment. My mom would drive me an hour each way to get Ozone IV therapy twice a week, I was back on other IV supplement treatments, as well as oral treatments. Many of my friends began to phase me out, stopping inviting me to social events because they assumed I wouldn’t be able to go. I missed days on end of school, and had to drop classes. I would get mocked for my academic deficits due to my illness. This time around, I was 16, so I learned that in addition to leaning on my mom for her support and expertise, I had to learn how to take charge of my health myself. Somehow, despite my relapse, I submitted all of my college applications and took the SAT, and got into my dream school. I graduated on time, with my class, and walked down the stage, filled with gratitude and pride. The moment I graduated, I dropped anyone who hadn’t supported me, and moved to California to start a new chapter in college.

Where am I now?

I’m not quite in remission yet, but I am getting there each day. I graduated college, on time, despite taking a semester off to focus on my physical and mental health. I made the most incredible, true friends, who love me, support me, and learned about my condition for me. I was able to study abroad, be vice president of standards for my sorority, and eventually got strong enough to dance again. After graduating, I moved home to take more time to heal, and even have been able to hold a part time job, which feels like a miracle, as my health would never allow me to commit to something so structured. It means the world to me that I can have that sense of independence each day. So, what’s my message? As you can see, Lyme is not linear. Healing isn’t linear. Each day with this illness will look different. No matter how healed I am, Lyme will always be something I consider, something that is always a part of me. Learn how to lean on the people who truly want to be there for you, and most importantly, learn how to lean on yourself. When juggling an invisible illness, you learn who is a true friend real quickly, and you will spend most of your time with yourself. Make sure that you are someone you like to take care of and be with. It’s always worth it, and healing is always worth it.


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Romy Rosen

Romy Rosen

Romy Rosen

Romy is a 22 year old with chronic Lyme Disease living in Portland, Oregon. After being diagnosed at the age of 7, she’s dedicated her life to healing her illness and advocating for those around her. She loves to engage with the Lyme community and provide support and advice to those also struggling with chronic Lyme.