Paula's Area

My school and stuff

I go to a regular school. In the beginning, there were quite a few problems. The teacher had never heard of my rare disease and could not imagine how hard some things are for me. Also a few classmates thought I was not ill at all and that I only wanted to have special treatment. That made me pretty angry and sad.

That’s when “just talking about it” helps

I talked about my feelings a lot with my parents. They explained to me that it’s probably not easy for other people to imagine what my illness feels like. They encouraged me to talk more about what I’m going through. This way, my classmates could perhaps better understand why there are sometimes “exemptions” for me.

My parents talked to my teacher again and explained everything in detail. I now try to talk with classmates when they say silly things. Of course, that’s not always possible and sometimes I simply don’t feel like it. But it has already helped. One girl who used to say stupid things to me has recently even helped me when I was not feeling so well.

Of course, my best friends already know a lot, because I tell them more. They sometimes back me up and explain to other students why exceptions are sometimes made for me. When they do, I’m really happy about the fact that I don't have to do this all by myself (as it can get irritating sometimes!)

Exceptions are not advantages

Depending on how badly a student feels, several exceptions can be made at school. For me, for example, it’s like this:

  • I have a second set of textbooks so that I don’t have to carry them back and forth in my school bag. It might sound weird but they can get pretty heavy!
  • For class work, I get a little bit more time. When I feel tired I cannot think as fast. I also need a break here and there, as sometimes I have pain in my joints, so it's hard to write a lot, or fast enough.
  • In PE class, I don’t have to participate in all of the exercises if I am in pain, or my doctor does not want me to do certain activities.
  • If I am feeling sick in the morning but get better again later, I can occasionally be late for school.

A boy from the children’s hospital once told me that he gets to use the elevator. This only works, of course, if the school actually has an elevator. My school doesn’t!

All of this stuff must be discussed and agreed with the headmistress’s office and the teachers. That’s why it’s important that parents check with the school.

In a way, I can sort of understand why other students think I am getting special treatment. Sometimes, they probably would also like to get more time for a test and cannot stand some of the PE exercises. But I am actually disadvantaged due to my illness, and it’s because of the exceptions that I have the same opportunities as everyone else to begin with. That’s why I don’t like it when others say I’m getting special treatment.

But I can see why others sometimes don’t understand.

My illness is not always so bad

Most of the time, people don’t notice that I have this illness at all. The really bad times happen during the flares, when I have a fever and awful pain, and I am not able to be at school. But then I stay at home or sometimes also need to be hospitalised. If I don’t have a flare, however, I also often feel sleepy and tired or have pain from time to time. Others cannot see that from the outside. I can only tell people, and hope that they believe me... it can get pretty tiring having to talk about this disease all the time.

After a while it got better at school. I now really enjoy going to school because I can see my friends there. And now I no longer have to explain that much about my disease.

It’s only occasionally that I have to explain it all over again, because several of my classmates keep forgetting. Some simply cannot understand that my illness will not go away but is here for good. (These are usually classmates I don’t talk to that much!) But most of them no longer ask silly questions that often. That’s a good start. I think my illness has now become more normal for others as well.

Read more:

A minute change in DNA can have big impact

Here’s our current understanding of the science behind the tiny DNA change(s) that lead to rare periodic fevers.

The Science
Friends are great!
View Tim's Story

December 2015 - GLDEIM/ACZ885/0044