I think I don’t have as many friends as some other kids. On the other hand, the ones I have are the best! They are always behind me when I feel ill. Often I can’t go out so they’ll come by my place instead.
It wasn’t always like that. At first my friends didn’t know that much about me or my illness. At first they thought that I didn’t want to hang out at all. Like when other kids have flu or chickenpox, for example, they usually can’t hang out because they are too ill or because we could get infected. I once asked my friends if we could play inside a little because I was feeling very tired. They were surprised at this, and one friend even asked if my disease was contagious.
That’s when I told them more about my autoinflammatory condition:
When I talked about my joint pain, a friend said that her grandma has something that sounds similar, called rheumatism. She then asked if I had an “old person’s disease.” I thought that was pretty silly (but I didn’t tell her so!) But then I explained to her:
Once I had explained all of this, it was easier for them to understand what was going on with me. They no longer think I’m contagious. Or being a snob. And since then, a few friends have come to hang out at my house. For example, we play video games or board games, or watch TV. Or sometimes we invent stories and draw them out on paper.
(If I’m alone with my best friend, we also talk about the cute and annoying guys in class...)
I used to be sad a lot when my friends were playing outside and I was alone at home. But now I understand that they cannot always come over. If I could, I would go out with my friends more often, but now I can also do cool things on my own, like reading, painting, crafts, listening to audio books, writing, or playing on the computer.
Sometimes I also play with my brother. He is young and not allowed to go outside by himself yet. This way, I am also helping Mom – who doesn't need to watch him and can do other things.
I also really like sports. If I am feeling really well I can play football or go skating with my friends. I also like swimming and riding a bike. These are still possible when I feel just a little bit tired.
My doctor said that exercise is good for me as long as nothing hurts me. But I should always warm up well and not put too much strain on my knees. People who have pain in their joints can talk to their doctors about which types of sports are still possible. There are so many types of sports, it’s possible to find something that will probably work and be really fun!
I also do a lot with my parents and my brother. On weekends we sometimes go to the movies or we bake a cake together. My dad can also come up with some really great riddles.
Sometimes I have to help at home, like setting the table or emptying the dishwasher. This can be quite annoying but I also think it’s cool that my parents treat me like a normal kid. After all, I am a totally normal kid. My illness is only a small part of me.