During the month of February in 2013 I was diagnosed with Crohn’s disease. I was sixteen years old, a junior in high school, and scared to death. I had not even heard that word before much less did I know what Crohn’s disease was. I am currently nineteen years old and I now have learned a lot about what the disease actually is. It is a form of inflammatory bowel disease that effects the entire gastrointestinal tract. The best way (and the most common way I use) to describe it to my friends and professors is that it is a lot like having food poisoning; except it is chronic (with no cure), autoimmune (the body is attacking itself), it cannot be controlled nor is it caused by diet, and it caused by inflammation of the GI tract (most commonly the intestines). It took me a long time to get to the point where I can quickly and efficiently explain what it is. When I returned to school after being diagnosed, it was extremely hard to explain what was wrong to my teachers because I did not entirely know myself. Having a chronic disease, such as Crohn’s, is a constant learning process that never ends.
I wish somebody would have told me the true extent to which this disease affects the life of people who are diagnosed with it. I After I was diagnosed I was fed a lot of information about remission, how great it is, how your symptoms are either minimal or nonexistent, and how it can last years at a time. Remission was the end goal and when I originally went into remission, I was ecstatic. I thought I was done with the disease. I chalked it up as a difficult time in my life that ultimately made me become a stronger person. I bought into the “it gets better” mantra and I thought I had permanently reached my “better”. I was positive that the remission would last for years; I needed a reality check. I needed someone to tell that I would not be “better” forever; but rather that things may not necessarily get better, but they will become different.
The remission lasted for about seven months, not even a full year. It was a great seven months, I had almost no symptoms and I was a normal teenager enjoying her senior year of high school. However, once I came out of remission the disease hit me (physically and mentally) like a ton of bricks. It was then that I realized that this was not something that I was ever going to fully overcome, that it was a lifelong diagnosis that was going to affect me more often than not. It was downright depressing. I missed over fifty days of my last semester of high school, just barely getting classes finished in time to graduate. I narrowly avoided surgery during that flare up and was placed on a drug called Humira. That drug has worked wonderfully and until this most recent flare up that I am currently going through, it has kept me in remission. However, the side effects that come with it are unpleasant and a constant reminder of the fact that within several weeks my entire life can be turned upside down by this disease. I have come to terms with this and the fact that until a cure is found for IBD, there is no changing this reality.
This leads me into the advice I would give to someone who is also diagnosed with Crohn’s disease; find something you love and hold onto it for dear life. There will be days where you want to crawl into a hole and give up. There will be days where you feel like everything is pointless because no matter what you do, there is no cure for this disease. There will be days when the pain is so great, that if you have to feel that way forever you would rather feel nothing at all. On those days, you need something to be the metaphorical light in the tunnel that brings you enough happiness and joy that it makes it worth it to keep fighting. In my case, this is music. It’s practical for someone living with a chronic disease, because you can take it anywhere and listening to music does not consume a lot of energy. Personally, the bands Memphis May Fire and The Color Morale have brought an incredible amount of happiness to me. Their music contains relatable and uplifting lyrics and it gives me an emotional outlet. If it was not for some of their songs, I do not know if I would have the courage to fight this disease.
Lyrics such as “Lift up your eyes discouraged one, when you feel like giving up, when they say it can’t be done, it’s up to you to show them why they’re wrong” from Memphis May Fire’s song “Legacy” are incredibly important to me and they remind me that there is always hope, even when you are fighting a lifelong disease. Some of their lyrics are darker, they acknowledge the struggles that people go through. Having those songs to relate to and to let me know I am not alone has been a huge blessing on my mental health. I have made a lot of friends because of music (many online, through social media sites such as Twitter) who are kind and supportive. There are many mental health charities (such as Heart Support and Hope For The Day) that have been created around these bands and genres of music, which has given me a place where I can focus on how the disease effects my mental health. When I attend their concerts, it feels like I truly belong and I am at home. I have also joined several street teams ran by record labels such as Fearless Records and Rise Records. Most of the work I do for those teams is focused on online marketing, so it gives me something music related to work on while I am stuck at home or in the hospital during a flare up. This past fall (after my first hospitalization and before I ended up having my appendectomy and bowel resection surgery) I had the opportunity to work and promote my first concert for Fearless Records and their bands Oceans Ate Alaska and blessthefall. It was an incredible opportunity and it was the best thing to happen to me this fall. I still remember filling out the application to work the concert while sitting in a hospital bed, and how much joy it brought me. That concert made the hospitalization, multiple medical tests, and stressful work to get caught up with school worth it. Due to how much I enjoy the live aspect of the music industry, I have decided to pursue a career in the concert and touring side of the music industry.
My dream is to own a music venue and to be the sole promoter and booking agent for it; I want to create a place for live music where people can enjoy their favorite bands and feel at home while doing so. Music may not have saved my life; but it gives me a purpose and a reason to fight. It has taught me to consistently know hope. It is my “technique” that I use to help myself live with Crohn’s disease. I believe that there is something for everyone that can give them a reason to fight, it is just a matter of finding out what it is. Having something to fight for is (in my opinion) one of the best ways to remain hopeful when fighting a chronic illness. It may be a person (such as a family member or significant other), the arts, a sport, or your career. Regardless, once you discover what that is, hold onto it, because I promise that once you look back on the difference that you have made it will erase every second of doubt.