Hello. My name is Julia Purrington and I am sick.

As a child, my life was always filled with illness. I never really got sick until my sophomore year of high school, when I got mono. My father was sick though. When I was seven years old, my father was diagnosed with Multiple Sclerosis, which is an autoimmune disease. In a matter of months he went from a normal looking and acting man, to a man that could barely walk, weighed 145 pounds when he was 6’3”, and looked liked he was a ghost. I watched my dad crumble in front of me.

When I was a sophomore I got mono. I don’t know how I got it, but I did. I had 32 sick days that year, and that’s when all of my life of being sick started. I don’t know if scientifically they are related, but from that point on I got really sick. I felt like I was going to die when I had mono. I didn’t want to move or breath it was so painful. Mono is bizarre because some people get it and have no symptoms, and then some people it feels like they’ve been hit by a truck multiple times. Having mono was one of the longest times of my life.

The next time I got sick was the summer before my senior year. That was a very eventful summer. That summer I started dating my boyfriend that I still have now, I went to Austria, and I got really sick. I vomited almost every day; sometimes I would vomit multiple times a day. I got so sick in Austria that I don’t remember parts of it. When we got back to the states we got a bunch of medical tests done. It was the first time in my life where I learned how slow the world of medicine is. I had a bunch of blood tests, ultrasounds, and allergy tests. It turns out that I had H Pylori and a lot of food allergies. H Pylori is bacteria that can eat through the lining of a stomach, causing ulcers and a bunch of other bad stuff. Surprisingly, that was the least of my problems, because it can be treated with antibiotics. The food allergies were the worst part, because I have to live with those for the rest of my life. I found out that I am allergic to avocados, bananas, shellfish, tuna, and corn. Corn is in everything. I can’t have anything with any corn products, including high fructose corn syrup, which is very hard to avoid. After a while I got used to it, but the first few months were hell.

People say that I’m a fighter. I’ve heard this since my dad got sick. I never give up, I never have. I believe that failing isn’t a letter or not getting what you wanted, it’s giving up. That was the one thing that kept me going, to not be a failure. I’ve been told that I have a “strong personality” from people I barely know. I never know how to react with comments with that. I can’t tell if it’s a compliment or an insult. I always say “thank you” anyways. Recently, something happened to me that tested, and will continue to test, my strength.

It started at the end of the summer, 2014. It was another wonderful summer. I hadn’t gotten sick, I played my violin in Carnegie Hall in New York City, and I had my first “real” job at Panera. I didn’t think it was a real job at all. It was an awful job. I bussed tables for minimum wage, and my co-workers treated me like crap. I got this awful burn one day from taking something out of the oven that someone had put in there improperly. My only friend at work had a similar burn, and said when she told management that she got in trouble and got yelled at, instead of them trying to help her. I didn’t say anything to management about it. But the burn got infected. It was disgusting and they saw it. Instead of asking if I was good they said, “Please cover that up. It’s gross.”

That wasn’t even the worst part of the job. It was the extremely heavy plates. And if someone ordered soup and pasta, forget it. You had to have one plate in both hands, for speed reasons. It was extremely painful. I hated running food, but I didn’t say anything because I didn’t want to get fired.

Eventually I quit. I quit for multiple reasons: 1. I was starting college in a week and 2. I was in a lot of pain. My doctor thought it was probably tendinitis, which would go away in less than a month. So, I waited for a month. The pain in my hands in wrists didn’t go away, it actually got worse. There was one day where I was laying on the couch next to my boyfriend and I started crying because it hurt so badly.

I went to the student health center at my university. A doctor had some tests done and then called me a few days later saying that they were normal and I should wear splints because it was probably carpal tunnel. I wore them for a while, but they didn’t help.

The odd thing about what I was experiencing is that my hands hurt really bad during the day, and then the pain fades into an ache as the day goes on. In the morning, my hands are bunched up into fists, and I feel like it’s impossible to move my fingers. As the morning progresses, I can move them a little more and it gets better from there. Some mornings my mom has to drive me to UNM, because I can’t open my hands enough to hold the wheel. Sometimes I need help getting ready in the morning. Sometimes it's not too bad and it’s pretty bearable.

Bearable isn’t something I wanted to live with. I want to live a normal, pain free life. As time went on I got worse. I was tired constantly but I thought that was part of being a teenager. Other joints in my body started to hurt. I went back to the student health center to try to see if there was anything else that could possibly be wrong. This time, I went in the morning, so the doctor could see what my hands were like in the morning.

The doctor was a very nice woman. She was very calm and I liked that about her. She decided to do more blood tests, because my joins were so swollen and stiff in the morning. That isn’t normal for someone who is eighteen years old. So she did more tests.

For some reason I was really nervous for the results. I was in Colorado for that weekend and I kept refreshing the student health result page, even though I knew no results were going to be posted there because it was a weekend. That Monday I didn’t get any emails or notifications on the website either. I thought, “no news is good news” and kept going with my life.

Tuesday I got a call from a number that I didn’t recognize. I let it go to voicemail, since it was probably a wrong number. I was sitting in my mom’s office at the time, and some of her co-workers were in there talking to her. I got a notification on my phone saying that I had a new voicemail, so I listened to it. It said something along the lines of “Hi Julia. It’s your doctor, please call me back when you get the chance.” I had never gotten a call from my doctor before. For some reason I felt like this isn’t a good thing.

I went onto the student health website to check to see if my blood test results were on there. They were. I checked them, but I couldn’t understand what they were saying. I stared at the results and waited for my mom’s co-workers to leave. I texted her telling her I heard back from the doctor. She tried to end the conversation with her co-workers but it seemed like it took forever for them to leave.

My hand shook as I pressed the redial button on my phone, and it connected me to my doctor. My mom got a pad of paper to write things down and scooted next to me in her rolling chair, pressing her ear against mine.

The doctor said she wanted to go over my blood work with me, since it could be kind of confusing. This all sounded good to me, like she was just trying to be helpful. As she continued talking, I realized that this wasn’t a good thing. And then, she said words that I never wanted to hear, words that changed my life. “Basically, Julia, your blood indicates that you have some sort of autoimmune disease.”

I didn’t know how to respond, so I just nodded. She couldn’t see me nodding, so she asked if I was still there. It took me a moment, but I said “yes.” She continued to tell me that she scheduled an appointment for me with a rheumatologist, a specialist who studies joints.

That was basically the end of our conversation. I have never heard from that doctor again. She was very calm at giving me the news that changed my life. It was so scary for me because I’ve seen what autoimmune disease can do to someone, that someone being my dad.

My life was a series of tests, unanswered questions and waiting. The waiting was the worst part. I have had countless vials of blood drawn, a few x-rays and one ultrasound since then. My rheumatologist said it could be years for us to figure out what this is. At the age of 18 I was on medication for a disease with a name that I couldn't pronounce because it was so long. This made me want to quit college and stay in bed all day. Granted, there were a few days that I couldn’t get out of bed, but there are much more where I felt like I was dying, but I got up and had my day anyways. I went slow and easy through the day, but I did it anyways. I’ve learned that it’s about the small victories in life, not the big ones. The small ones are the ones that get you through the day, and through life.

You shouldn’t take a day of your life for granted. I heard that all the time before this happened, but it’s true. This condition, that I will now live with forever, came out of nowhere. It just happened one day and now it's something that I've had to accept. I wish I could go back to all the days where I could’ve done something and didn’t, because then I would do all the things I want to do. The other thing that I’ve learned is that people are much more understanding then you’d think, and you can never give up on yourself.

At the beginning of the whole process of diagnosis and treatment, I let my disease define me. I felt like I carried a sign that said "I'M SICK" on it and I used my illness as an excuse for a lot of things. I did this until very recently when my grandma told me that she was afraid that I would never live my life because of my disability. I then realized that I was letting something negative define me and that I get to choose what defines me and what doesn't.

I don't want to be known as "the sick girl" or "the one who's never around because she's sick." I want to be known as the person who fights every day to live a "normal" life. It seems contradictory to write an article about something that I'm really private about now but I deserve the freedom of having people know. So let me begin again:

Hello, my name is Julia Purrington. I am sick, but that is not all. There is so much more to know about me and so much more I'm going to do in my life. My illness does not define me. It's nice to meet you.