Throughout my life I’ve had to deal with explaining my disease. When I was younger, I think it was more difficult to explain it. I had a decent understanding as to what it was, but it was harder for other kids to understand. It is definitely hard to grow up having a responsibility of doing these treatments and taking these meds that relies solely on your own doing. Yes our parents helped us, but as we grew up we were taught more about how we had these responsibilities that were important for our health.
Most kids have some responsibilities, like doing chores, or taking your dogs on walks, mine were just different. It’s a good thing to have, but its always felt like I’m older than I actually am since I have to worry about things most kids don’t have to deal with my age. I’ve learned to make do with it, sometimes I’m grateful to have that extra something to deal with because it makes me thankful for things more and not take things for granted.
When I was younger It would be harder to tell people. Kids wouldn’t understand, didn’t know what some health issues meant. Until I was around 4th grade and met my current best friend, I hadn’t actually met someone who knew how much cf affected me and my sister and what cf was in a certain depth.
When I told people about it I would always have different reactions. Looking back at it, I didn’t tell many people. When I was in 4th grade I had this one “friend.” She ended up not being the nicest person and didn’t understand cf. When we told her she had ended up not being nice about it. She told people we were just saying it for attention, which looking back at it is actually really rude since cf can be so severe. She told our whole class about having to go down to the office before lunch to take pills, which made it sound bad.
All of our teachers of course knew about it and the office. Some people would just not react, would brush it off. No one really took it in account for something that could actually affect someone. Since it is a rare disease I understand that to a certain extent. No one has really heard about cf.
One time in my sisters 5th grade science class they watched a video or something about cf. Brianna had gone home early due to stomach issues, but her friend told her. Someone said they knew someone with it. I think they should teach more about certain diseases like cf, or eds, or something. It can help people understand more and learn that there is more disease out there than just cancer, or the flu. It can be frustrating to hear that not a lot of people know what cf is, that’s why Awareness is so important, especially since it is a rare disease.
In 7th grade I had a bad friend experience. Obviously I won’t say her name but she wasn’t the nicest either. One time when Brianna was being admitted, I was coming with Bri to the hospital to help and such, and let’s call her Jessica. So Jessica said I should go to school. She didn’t understand and that wasn’t the only time.
I knew her since 6th grade so it was before I was getting admitted. She did a couple other things to annoy me and be rude and I ended up ending that friendship.
That’s all for now,