School is hard enough as it is - just imagine what it’s like when you don’t just FEEL different, you have a condition that means you ARE different to everyone else. All teenagers want is to fit in. We want to get up and go every morning, free from pain. There’s no-one I know who doesn’t want to participate in sports, field trips and social activities, just like all their friends.
In 8th grade, after my AS was diagnosed, I made a promise to myself that I would be a regular student, that I wouldn’t let my illness influence my life. I went to school smiling and told everyone that I was fine. I‘d wake up in the morning, stiff and in pain, but then force myself to act normally.
I never allowed myself to tell people that I was suffering – and who would’ve believed me anyway?
“AS is invisible to others and I just assumed that they wouldn't – couldn’t - understand."
The subject I enjoyed most, and excelled in, physical education, suddenly became a real battle for me. I would always bite my lip and participate, try to run and jump like everyone else. Partly I was holding onto my old habits but partly I just felt that the teacher didn't believe that my knees were hurting.
“I found it hard to adjust to the fact that I wasn't who I used to be."
I wasn't the same light, energetic and active young person to whom sport was an important part of her everyday routine. I now walked very slowly, always behind the others, always needing my friends to wait for me.
It wasn’t just classes where I had to be on my feet that were hard. Even in more academic subjects, there were times when I counted the minutes that were left until the end of the lesson because I just couldn't sit still anymore. I didn't tell the teachers and didn't allow my parents to tell them. I didn’t want them to feel sorry for me or for them to think that I was weak.
I didn’t understand then that my desire to be a regular teenager, to hide my AS, was actually harming me. It took a year, or even longer, until I came to the understanding that AS is a part of my life and that I can't ignore it. Only then, things began to change.
Learning about AS
In the next year I learnt a lot about AS and I understood that, while my illness doesn't necessarily have to dominate my life, it cannot be ignored. My AS will always be with me and I needed to learn to live with it.
My new approach began with telling my closest girlfriends about my struggle so that I didn't have to lie every morning, pretending I was fine. Keeping the pain a secret hadn't helped and had just intensified the bad feelings. I needed to find the people I felt comfortable with to share and explain. Now when things were difficult, I always had someone I could turn to.
To this day, I’m still not sure that my friends understand completely - only someone who has experienced the pain of AS really gets it – but they have always responded with love and support and I know I can rely on them.
Next to tell were my teachers. I was absent on many days because of medical appointments or because the pain prevented me from attending school. It was difficult for me to reach some of the classrooms as the walk was too painful and slow. Together, my mother and I explained to the teachers what I was experiencing and that, on some days, the AS prevents me from getting to school. We told them that sometimes the pain in my hand is so great that I can't write. Most importantly, we told them that when I say I don’t feel well or that I am in pain, I am not pretending, I am coping with a real illness.
Learning with AS
I now accept that there are days when I need to listen to my body, be gentle with myself and rest. This means that there are still activities and trips I have to choose to miss but now it’s my choice.
After talking to my GP, I stopped going to PE lessons, and saved my strength for homework, exam preparation and, more importantly, for my ballet lessons, which were so important to me. When I came from school I was totally exhausted and so every bit of energy saved was crucial. If I did go on a school trip, I’d find out beforehand what it involved and exactly what kinds of physical activity would be required of me.
Slowly, with time, I learnt more and more about AS and together with my parents and my teachers I found creative ways of coping. When my hand hurt, I went to school with a laptop and typed instead of writing. Sometimes I did oral exams. I got permission to have two sets of school books - one for class, one for home - so that I wouldn't have to carry a heavy bag around with me.
My parents reminded all the teachers about my health every time there were parent-teacher conferences, and when specific problems arose, they wrote them an email. After finding these ways of getting organized and sharing my situation with others around me, school became easier and more possible for me. I learnt to have a short rest immediately after school in order to gather some strength for the rest of the day. Most importantly, I learnt to listen to my body and not to keep my AS a secret from those around me.