One to 10 has never been my scale. The unnerving pain that either felt like sharp needles digging deep into my stomach, millions of knots filling it, or sharp shooting pain that resembled what I thought it would feel like to be shot in the stomach could never be restricted to a 1-10 pain scale. Clearly 1-100 wouldn’t be realistic either; so I settled on 1-20.

Crohn’s disease belongs to a group of conditions known as inflammatory bowel disease (IBD) and is a chronic inflammatory condition of the gastrointestinal tract. IBD incorporates both Crohn’s disease and ulcerative colitis, which are two entirely different conditions, although they are often lumped together. They differ in what part of the gastrointestinal tract they affect. For example, ulcerative colitis affects the colon (large intestine) and Crohn’s disease affects the small intestine. Crohn’s disease is different for almost every individual.

March through October. For eight long months no one knew what was going on, but no one wanted to know more than my parents. Watching me dart from the table to the bathroom in fear of getting sick every time I ate, my parents wondered about anorexia or bulimia. Looking back on it, they’ve told me that they were just considering every possibility since they couldn’t figure out what was going on. The doctors didn’t help much in the beginning either.

In August I weighed myself for the last time during my diagnosis process. I was at the lowest I can ever remember weighing: 77 pounds at age 12. I hadn’t had food pass through my mouth in months. Food hurt me. My body saw it as the enemy and changed my perception of it from something I needed in order to survive to something I needed to avoid at all costs.

Gastroduodenal Crohn’s disease is what I have. It involves the stomach and the duodenum, which is the first 10 inches of the small intestine. Typically, people living with this type of Crohn’s disease suffer from nausea, weight loss, loss of appetite, and if the bowel is obstructed, vomiting as well. Sounds lovely, right? My symptoms were a lack of desire to eat, which led to my skeletal appearance, surging and writhing abdominal pain and cramping, inability to function due to loss of energy, depression, and the mouth sores that I’ve spent a lot of time trying to forget. Fun, right?

On top of all of that, Crohn’s is an autoimmune disease. My body chronically fights itself. It views itself, food, and medications as foreign objects and tries to fight against them, eventually destroying itself. Because my immune system overreacts and works too hard, I now no longer have one. If I move away from you when you cough or sneeze, don’t take it personally. I can only fight myself; I can’t fight off you too.

My mom’s voice would often wake me up in the afternoon. The soothing sounds would waft through the open doorway of my bedroom. This became a regular occurrence. She’d wake me in fear that I’d nap the entire day and then not sleep at night, which was never actually a problem. Six months of not eating and my body was rebelling. It had no energy. Mom would wake me up and invite me into the living room to join the family to watch television or something of the sort.

I’d force my body down the hall and into the living room. After dropping onto the leather couch, it was a matter of minutes before I was asleep again. That summer, a lot of people told me I’m cute when I sleep.

There is no known cause of Crohn’s disease. Recent research suggests that it might be due to hereditary, genetic, or environmental factors – or the interaction of all of these. My father has always had stomach problems and is borderline for the diagnosis. Two of my aunts have it as well.

When I was 12, my doctors were still trying to figure out what was going on. Once they determined it was some form of inflammation, they started me on a steroid. This medication has saved my life numerous times, but the first time is the most memorable. After a couple of months on it, everyone could see a difference. Granted, I still wasn’t gaining weight, but I had more energy than I knew what to do with. I’d wake up incredibly early in the morning during my winter vacation, make my mom coffee, empty the dishwasher, finish the laundry, mop the floors, scrub the counters, dust the television, and start my book report. I remember that vacation more vividly than the entire summer I was sick. My dad was ripping up the carpet in our house and installing wood floor. It looked great, but all of our living room furniture was in the kitchen. I remember jumping over couches and maneuvering my way around televisions and back again, just because I could. I had the energy for it. I could get up and walk without falling over, and I could stay awake without constantly being propped up.

After months of being on the steroids, I began to look like a chipmunk (weight gain in the face is a common side effect). Friends asked if I had had teeth pulled. People stopped saying I looked great. I had not only gained all the weight back, but added to it. As much as the steroid saved my life, the teenage girl in me will always hate it for how it altered my body at a time when I was already self-conscious.

The medication list for inflammatory bowel diseases is constantly growing. I suppose this is a good thing, because it means that doctors are still trying to discover new treatments, but in reality it’s because it’s necessary. When I was first diagnosed, my doctors looked directly in the eyes of a naive 12-year-old and told me that no one dies from this disease. Well, I say bull to that. Had I gone on for another month or two without eating, I would not be here right now. So, bull.

Prednisone, Imuran, Mercaptopurine, Methotrexate, and Humira. Do these mean anything to you? They are drugs that reduce inflammation and help put Crohn’s disease into remission. At one point, that didn’t mean anything to me. In fact, after I had been taking medications for awhile, I decided that I was healthy and didn’t need them anymore. I quietly threw the pills out every night, placing a napkin or a tissue on top of them in the trash to make sure my parents didn’t notice. But they did. They noticed because I stopped being healthy. My blood test results declined drastically, and my doctor asked if I was taking my medicine. I remember sitting on the couch between my parents the day I finally told them. I never said anything. I just nodded my head when they asked, tears rolling down my face.

X-rays, blood tests, upper GI (gastrointestinal) scans, endoscopies, colonoscopies, dye infusion scans – the tests went on and on, because each only reaches a certain part of the body. My inflammation was and is in my duodenum. Endoscopies only reach into your stomach and colonoscopies don’t go much further than the beginning of your colon. Upper GI scans require the patient to drink barium, a chalky liquid that is used to outline the digestive tract so it can be easily viewable with special X-rays. I’ve had to drink this stuff twice. It tasted awful, I was in an obnoxious amount of pain, and even my mom couldn’t help me. What was worse is that none of the tests showed anything. Being poked and prodded for months did me no good; I still had no answers. After months of testing, my doctor finally started treating me. They diagnosed me without 100 percent proof of the disease, but based on my symptoms, they knew they had to act. I didn’t care what they called it, I just wanted the pain to go away.

Though the doctors didn’t know what to say, I received a lot of comments and advice from non-medical professionals. Having people suggest that I try to diet or eat differently isn’t helpful. Hearing comments like, “You look great!” when I’ve lost 50 pounds in a month isn’t helpful. “You’re so lucky! I wish I could lose weight that easily,” is possibly one of the most insensitive comments I’ve heard.

When I went to college, my parents still had many worries about my health. Telling my roommate about my pain scale only seemed to frighten her.

“Should I contact your mom?”

“Only if it’s really bad,” I told her.

“So on a 1-10 scale, when should I call her?”

“Not 1-10, 1-20. And when it’s over a 17. I can handle it up to a 17,” I explained. Last semester I hit a 17, but I didn’t tell her. Hiding it is what I’ve, inadvertently, been trained to do.

Crohn’s disease is not a relatable condition. I could spend hours telling you about the pain and how it has disrupted my life, but the truth is, even other people with inflammatory bowel disease don’t understand, because the condition is unique to each person. I’m lucky: mine isn’t nearly as severe as many I’ve heard about. But the level of pain I associate as my everyday experience cannot be compared to your two days of food poisoning. I spent my teenage years hugging trashcans and experimenting with (doctor-approved) medications and crying myself to sleep at night asking God – a God I’m not 100 percent sure I believe in – “Why me? Why does living mean having to endure so much pain?”