Paula's Area

My life

My friends

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, if I can’t go out, 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. They used to think 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:

  • It is not contagious, meaning that no one can “catch it” from me.
  • My illness started when I was very small. I did nothing to cause it myself.
  • Sometimes I have severe flares (meaning I feel very unwell) and then cannot go to school.
  • I’m OK between flares, but still, I often feel tired. I cannot go along with everything and it’s better if I stay at home sometimes.
  • My illness can only be detected by a special doctor.
  • My illness cannot be cured, but treating my symptoms helps.

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:

  • There are also many illnesses that kids or teenagers have involving joint pain. There are even rheumatic diseases affecting babies! The thing is that they happen more rarely than adult rheumatism, and that’s why hardly anyone knows about them. Except, of course, the doctors and the kids who have the conditions. And these rare types of rheumatic conditions usually begin in childhood.

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 am alone with my best friend, we also talk about the cute and annoying guys in class. ...)

Sometimes, it’s also nice to be alone

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 – so she can do other things.

Exercise is cool

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 likely to find something that will work and be really fun!

My family is cool, too

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.

Read more:

Tim’s Story

A story about a young boy with an autoinflammatory illness

Kids Corner
Friends are great!
View Tim's Story

December 2015 - GLDEIM/ACZ885/0044