Autoimmune Hepatitis - Accepting that I am different

It was a cold and snowy day in November. I remember because the frosty white ground seemed to make my eyes seem that much more yellow. The kids on the school bus stared at me and told me over and over that my skin looked yellow too. Being 12, I did not have the knowledge to even hypothesize what was happening to my body. I went home that day and told my parents. There were a lot of phone calls that evening, but no one seemed to be worried- so I wasn’t either. Now looking back, I knew my parents were concerned but just trying to protect me with their smiles and nonchalance. After a doctor visit and some blood tests, there were only more questions with no answers. For weeks I stayed home from school, feeling perfectly healthy but growing more jaundiced, and feeling more isolated. Fellow classmates would take turns collecting my homework and bringing it to my house so I wouldn’t fall behind. They would ask me why I wasn’t at school and I would simply say “I don’t know, the doctors are trying to find out what’s wrong with me.”

One day the phone rang ominously, breaking the silence that was in our house. It was the doctor with my diagnosis. My mom sat at the kitchen table with a pen and paper, writing and nodding. Her voice seemed to get quieter as the conversation went on. That was the day I learned I had Autoimmune Hepatitis. At that moment, and for many years afterward, it was all a bunch of mumbo jumbo that I didn’t understand. I asked if I would ever be cured. My mom looked at me with tears welling in her eyes, “no” she said. From there I got more blood tests, a liver biopsy and was put on medication. The medication was prednisone, a steroid that had an awful taste and even nastier side effects. Weight gain, swollen face, increased body hair. That winter I never felt more like an alien in my life. I had to stop playing soccer and take time off of dance class because I was always tired and my body was recovering from the inflammation. When I finally went back to school I remember everyone staring, and teachers acting strange around me. They would give me big fake smiles and ask how I was feeling, what was new with me and how I have been. I wanted to tell them “just ask me already!” They would make phony small talk, just wanting to know my business. The older girls in school told me I looked sadder than usual, one girl even came up to me and asked if I was pregnant. From all the weight gain and the rumors, it was a fair assumption. I remember not fitting my clothes, feeling bloated and ugly, being so hungry all the time, feeling tired and drained, and overall feeling like I was drifting father away from myself each day. I wasn’t my usual athletic and energetic self anymore. 

When I entered high school I was officially in remission. No symptoms, I was off medication all together, and I was back to playing sports, dancing, working hard in school and having a busy social life. This may seem like it was perfect timing. However the way I see it now, it was also the worst. I entered a new stage in my life that was full of ways that were going to test my strength as a person. At first, I held my head high and told people that I did not drink. I had a difficult time trying to come up with ways to say it, but eventually decided I would just tell people I had a bad liver. After numerous parties of people offering me alcohol and turning it down, I started to become extremely tired of explaining myself and even started to get angry. I was angry at the effort I always had to put in to saying no, having drunk people say rude things to me, ask me if I was dying and putting in so much energy to avoid the situation. I was angry at the fact that I just couldn’t be like my friends, be care free and accept a drink when I wanted one (now I know that it isn’t that hard and that it was a petty problem, but as an adolescent it seemed like the end of the world).

One night in April of 2007,  I decided I would try it, just once. I had a few coolers. Next thing I know I was drunk and having the greatest time. I remember feeling so intrigued by this new feeling of being accepted. Feeling like I could pretend for one night that I didn’t have a disease. That new feeling became an addiction. I decided from then on that I would not to tell anyone. All these new friends I was making, all the new boys I was meeting, why do they have to know? It was hard to say out loud and it is a pain in the butt to explain. So, I decided I was going to be Samantha, a high school student that blended in with the rest. As my friends and I started to grow up and started going to parties, it’s only natural that kids were going to be drinking alcohol. In my generation there is definitely no shortage. In fact many people don’t even know how to have fun or think it’s not considered a “party” until there is.

Four years of high school came and went. At the end of those four years I was slowly turning away from alcohol as I knew in the back of my mind that I couldn’t keep doing this. I remembered being 16, telling myself that I wouldn’t drink forever, that it was only for a little while. But it wasn’t until I entered university where the guilt really started to sink in. I don’t know if it was the maturity level that changed, or the fact that I became more educated and realized what I was doing to myself. Sitting in biology, learning at a cellular level what is actually going on when I drank and what harm it was doing to my body was unnerving. It shook me to my core. A tidal wave of stress and regret washed over me. What have I done to my body? I wished I could take every sip back.

At 19 years old, I began to unravel dreams and goals for my future. I was so excited to get my degree and get a career, enjoy my twenties and make a difference in this world. I felt this liberating feeling of wanting to be the best person I could be and really make something of myself. That’s when it hit me that I hope I didn’t screw it up, why was I wasting my time so caught up in the present in high school, why couldn’t I see past all of that nonsense and realize what was best for me? I started to see that I am different, that I should have been stronger, accepted it and stayed true to myself. For the past two years I have been actively working on this side of me. Staying away from getting drunk and only having a drink every now and again, eating healthy and working out, trying hard in school and being a good friend and a good person. Just taking care of myself. Mostly taking care of my mind. I have been trying to concentrate the positive energy on believing that I will stay in remission if I just believe that I can be true to myself. All those years that I was in remission in high school I took for granted.

Today I still have struggles that I face, like still avoiding telling people that I have a liver disease. For some reason it still is hard to say, even though I know that there are so many worse things out there in this world. I need to remind myself that I am so lucky- I can walk, breathe fresh air, smile, laugh, love, learn, make friends and see the world. It is better to focus on what I can do rather than get down in the dumps about what I cannot do. I know that now, and I am writing this here today to solidify it. I want to acknowledge that I have this illness and use it to make me better. The first step to that is joining the Canadian Liver Foundation support group and to not be afraid of who I am anymore.
Samantha, Winnipeg, Manitoba