S.M.

My freshman year of college I was misdiagnosed with Multiple Sclerosis and completely altered my life to hide how I was feeling; I wanted to pretend that being sick was not going to be a major part of the rest of my life. 6 months later, after spending my summer visiting numerous doctors in Boston, I found out that this diagnosis was false. Despite what everyone else felt about this great news, I felt hopeless and completely lost. Although I was not going to suffer from Multiple Sclerosis for the rest of my life, I still felt the exact same or worse than I did when I first heard the diagnosis. For me, the original diagnosis lead me to a path and a future that I felt like I could somewhat control based on my lifestyle. In the span of a few hours, with the specialist at Mass General Hospital, I was back at square one. It was not until I returned back to school that I found someone that could explain my frustration and understood all of my symptoms. I was diagnosed with Lyme disease as a sophomore in college but the symptoms have been developing since I was 8 years old. I have had discoloration on my back and a bullseye rash since I was a kid and no one could explain why. I was bit by a tick and the bacteria has been living in my body since this moment, hence why the symptoms became so severe. It started as severe fatigue that would keep me in bed until 6 pm on some days, I drank so much caffeine to try pretend it was normal as a college student to feel this way. I started to develop numbness in my right leg, headaches, extreme brain fog, memory problems, chronic pain, and severe anxiety. I was anxious about the way I felt, how people looked at me, missing classes and asking for help. I have always struggled to ask for help because I never wanted to seem like I needed it, I thought I was capable of anything and in my head I thought I was weak to ask for help. The symptoms got significantly worse and lead me to distance myself completely from school, work, and my social life. In the beginning, I was even hesitant to explain how I was feeling completely to my parents because they were far away and I didn’t want them to worry too much before I really knew what was going on. My misdiagnosis was a wake up call for them and at that point I had to explain everything; they helped me immensely through this and I seriously regret not asking for help sooner. 

After visiting numerous doctors, some who told me that it was a result of stress, it was all in my head, or that they frankly had absolutely no idea what was wrong with me and no intention of helping, I was devastated. Leaving every appointment in tears, I began to believe that maybe I really was just crazy. My self esteem was diminished and I really thought that I was never going to feel better. I finally found my current doctor and found a meaningful diagnosis; my whole perspective began to change. I knew that there was at least someone in the world who connected all of my symptoms and truly wanted me to feel better. I found the last bit of hope and although I knew it would be a long journey, I couldn’t wait to eventually get my life back. Before I was going to get better, I knew it was going to get worse for at least a few months as I detox the excess bacteria that I was hosting inside my body. Despite this, I would have done anything to get my life back and a few more months seemed like nothing in the grand scheme of my future. It was the hardest transition of my life and honestly understanding when to take a step back was one of the most difficult tasks I had ever been given. It took me a few months to even understand that I needed to take a break. I continued to attend school and did anything I could to feel normal, ultimately coming home feeling worse and exhausted. I wanted to feel confident as a student in my classes, not forget everything I spent hours reviewing and walk into tests with an indescribable anxiety that made my mind completely blank. I wanted to have a social life as a college student and be able to go out with my friends on the weekends without knowing that the next two days would be spent in bed. 

Understanding how much my life needed to change in order to feel better took months. I tried to be normal and hide how I was feeling for months. I never talked about it because I never wanted to seem like I was less than who I was before. I even continued to competitively snowboard because I refused to give up my life. Snowboarding was always the biggest part of my life and I was not going to let Lyme disease change that. This pushed me to the edge, it made me realize that I was not nearly as confident or able to compete as I thought. I ignored what I was feeling because I could not think to give up my life, especially something that made me so happy. I really pushed myself and it taught me so much about myself, both the good and bad. Eventually, I was sick of improving so slowly and I had to force myself to make changes. I had to look at everything from a different perspective and learn to make decisions to prioritize my health, even when it seemed like all of my friends were doing it. I made changes slowly and I learned that it is actually really cool to prioritize your own health, both mental and physical, and if anyone really is looking at you differently because of the hardships that you’re facing, they truly have no place in your life.

My family and friends were monumental throughout this process and without them I have no idea where I would be. They pushed me to overcome something that was controlling me in every way. They helped me to look past my disease as a problem and understand the immense growth that I have experienced. I became independent in handling my own appointments, medications, research, but also learned how important it is to ask for help when you need it. People are always eager to help, you just have to ask. Through this experience I grew immensely and it changed the way I look at life completely. For a long time, my mind was clouded with dark, negative thoughts and I always thought about how I was never going to get my life back. Through this experience, I learned that everything in life is what you make it. I could spend the rest of my life unhappy that I don’t have the same energy levels and the same life as a “normal” college student but, this mentality would only make everything harder for myself. At my darkest point, I read a book about the power of your brain on your body and I was determined to change. I knew that this disease was going to be a part of my future until someone does find a cure but, I also knew that I have an amazing opportunity to make it the best that it can be. I may feel different everyday but some people don’t get the chance to see everyday and that was one of the most powerful thoughts I had when I was in and out of the hospital.

I have the power to make my voice heard and help people that might feel just as lost as I did. No matter what you are going through, there is always people who care and sharing how you feel is extremely powerful. Until this opportunity, I thought that sharing my story would be a cry for pity, something that would make people change the way they thought about me. I didn’t want to share something that seemed so personal on social media because it is not the normal thing to do. Social media highlights the best parts of peoples lives and I did not want to write a novel about how my life wasn’t up to everyone else’s standards. Social media lacks honesty as a community and people don’t want to stand out in a way that makes them vulnerable and risk being judged. As a culture, social media is impacting us negatively because although we know that most people only share a highlight reel of their best moments, physiologically we are still deeply impacted by this competitive idea that our lives have to seem perfect. Through this incredible opportunity, I have learned that sharing things that are hard is empowering and the people who reach out to you are eager to help and to learn. Even just beginning to write about it has made me feel better than I ever would have thought. 

To anyone going through anything like this, my biggest piece of advice would be to always ask for help. Chronic diseases can be controversial, scary, and lonely but you truly are not alone. If I could give myself this piece of advice 2 years ago, maybe I wouldn’t have fallen into the dark places that I did. I experienced growth and happiness I never thought I would find and I encourage you to step out of your comfort zone. It is always okay to ask for help and there is always someone willing to help. I stepped far out of my comfort zone to write this story and I did this because there is no reason to feel like you are alone in anything. I want my story to make other people feel comfortable and allow anyone to reach out to me for help. You are incredibly important and no disease could ever define you.