If I asked someone to say the first three phrases they would use to describe me, I would imagine it would be rather easy. They might say I was a “singer”, a “boy”, or an “annoying as*hole”. There are a billion words that people might come up with when they first look at me. And I highly doubt that “chronically ill” would be one of them.

Unfortunately, that phrase is very accurate when used to describe me.

Me, aged 12, summer 2009, 4’11” and 110 lbs

As a kid, I rarely got sick. I grew normally, ate like a horse, and was very active. When I was a young child, I did gymnastics, but moved on to become a figure skater when I was in fourth grade. I prided myself on my flexibility, endurance, and energy. However, when I was about thirteen years old, everything changed. While I normally ate anything in sight, all of a sudden, I couldn’t eat anything without getting severe stomach cramps. At first, my parents thought that I was lactose intolerant and took me to get tested. It turned out to be true! I was, according to the gastro, lactose intolerant and nothing more. My parents bought lactase pills and switched out all the milk in the house for lactose-free milk. We were done with it. I was cured.

Except I wasn’t cured at all. I continued to have stomach pains, and they were getting worse. I would wake up in the middle of the night, screaming in pain, feeling like my abdomen was about to explode. When meals came around, I would try to eat a few bites, and immediately would run to the couch and curl up in a ball, my knees touching my chin, and cry for hours. My stomach pain began to take over my whole life. From October 2010 to January 2011, I went from 5’1” and 111 lbs to 5’2” and 82 lbs, and I missed over three weeks of school. My body was starving to death, and I had no idea why. After a year of bad grades, emotional distress, and many days spent sobbing and writhing in pain in my bed, my parents and I were fed up, and we knew there was something seriously wrong.

I spent my summer before freshman year of high school in and out of hospitals, being tested for various conditions. After several weeks of being relentlessly prodded and pricked, swallowing radioactive chemicals, getting x-rays, and even getting (gasp!) a colonoscopy, I was diagnosed with Crohn’s Disease, a chronic, incurable autoimmune illness of the digestive system. Basically, my digestive system, due to a defect in my immune system, decided to stop working and start swelling and bleeding, making me unable to absorb nutrients from the food I ate, and causing me unbearable amounts of pain. The inflammation was primarily in my terminal ileum (small intestine) and my ascending colon (near my appendix), but there were accompanying symptoms all over my body. I was started on a medication called Pentasa, which I had to take twice a day, in the form of eight pills, each about the size of a pinky toe. Although it was miserable at first, I have since gotten used to it (considering the medication is essentially keeping me alive).Me, aged 14, summer 2011, 5’3” and 85 lbs

Although it is not impossible, it’s very difficult to live as a chronically ill person. First of all, medications are a pain in the ass. Especially when your medication regimen consists of a dozen different medications to be taken at multiple points in the day, for the rest of your life. Often, in exchange for helping the highly unpleasant symptoms that chronic illnesses come with, the medications that are prescribed have side effects, such as appetite loss, agitation, joint pain, or digestive issues. Chronic illness also comes with unwanted lifestyle changes. Being chronically ill, especially with Crohn’s Disease, means always having to position yourself near a bathroom in case of an emergency (preferably single use), having anxiety about taking long journeys in unfamiliar places, and having to scramble to catch up in school and work due to excessive absences. The school nurses in my 2000+ person high school knew me by name because I was in their office so often. And to top it all off, people treat you differently when they find out you’re ill. Often, I find that people treat me like a child, and look down on me with pity, once they know that I’m not as able-bodied as they are. People sometimes assume that I have some sort of flawed or unhealthy lifestyle that allowed me to develop my illness. And, worst of all, people, especially those in authority positions, often mistake my absences and shortcomings for laziness, when, in reality, I am working to my full potential while simultaneously having to deal with my own body trying to kill me. All in all, chronic illness is TIRING.

Now, I know you’re all probably pitying me right now, and thinking about how sad and helpless I must have been as a 14-year-old who weighed as much as a medium-sized dog. But Crohn’s has taught me a million important lessons that I might never have learned otherwise.

First of all, my illness has taught me never to judge other people’s bodies or appearances. As someone who resembled a skeleton with skin for almost three years, I know the feeling of being judged for my appearance all too well. People called me an anorexic, told me that it was “revolting” that they could see my spine through my shirt when I bent over, and frequently told me that I was too skinny. I know how horrible it feels to be shamed for looking a certain way that is entirely out of my control, so I never talk about other people’s bodies in a negative way. Everyone’s body works a different way, and who is anyone to judge another person’s body?

Another thing I have learned from my illness is to take advantage of every single moment that I feel healthy. Although prognoses for chronic illnesses have made vast improvements, and although my condition is not nearly as severe as it could be, my statistical life expectancy is several years shorter than that of a healthy person. Also, much of a sick person’s life (even if it happens to be a normal length life) will be spent in bed, being treated for various complications of their illness(es). Knowing this, I have a much greater appreciation for my body, my health, and time. Every time I wake up without pain (which has, fortunately, been the majority of days in the last two years), I know that I have to make the most of it, because I really can’t predict when my symptoms will strike again. I eat what I want, I go out and have the time of my life, and I spend as much time with my friends as I possibly can. I have learned to treat every healthy day like it could be my last, because, in all honesty, it could be.

The most important thing that this illness has taught me, and continues to teach me, is to always look on the bright side of things. When I was newly diagnosed, I would sit up in bed at night, with tears streaming down my face, wondering what in the world I had done to deserve this awful turn of events. I envied every single one of my peers, who were growing tall and strong and healthy, while I was left behind. I thought, in those moments, that nothing would ever get better. But at some point, I realized that there was no point in focusing on how bad things were in the present. Whenever I wake up and feel like a car is repeatedly backing up over my midsection, I envision myself in some sort of endurance sports competition. I know that if I can push through the pain and discomfort, that the other side is going to be waiting there, and things will be back to normal. Of course, eventually, the cycle will repeat itself, and my Crohn’s will flare up again. But instead of thinking about my impending and inevitable illness, I only think of all the things I’m going to do and experiences I will have while I’m healthy. If I only thought about everything that I have been unable to do in the past, or might miss in the future, because of my illness, I don’t think I’d be able to survive.

Me, aged 18, January 2016. I am much healthier now, as my Crohn's is, more or less, in remission.

Although in this article I’m taking a very positive outlook on my own illness, I am NOT trying to glamorize illnesses in any way. Illnesses are terrible, they suck the life out of you (literally), and when they don’t suck it completely out of you, they make it a hell of a lot harder to endure. If my Crohn’s gets really bad at some point in my life, I might have to get my COLON taken out. That means no pooping! Ever again! How f*cked up is that? A lot of the time I wonder if life would be better if I were healthy, and I’m sure in many ways it would be. However, despite all the terrible things Crohn’s has brought me, it has given me a new perspective on life, and an exquisite appreciation for everything worldly. And I appreciate that every single day.