anyone willing to talk

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cudzy
New Member


Date Joined Oct 2006
Total Posts : 3
   Posted 10/31/2006 9:32 AM (GMT -7)   
Hey,
I'm doing a project for my sociology class about the social impact of cystic fibrosis.  I would really like to find out what it is like to have cystic fibrosis from real teens who are living with it.  If anyone would like to give me any information in response to these questions that would be extremely helpful.  I really appreciate your time!!
 
1. What is your gender, age, school year and condition/manifestation of CF?
2. Is it hard to get school work done? What are the biggest challenges regarding school work?
3. Do your teachers understand your circumstances? What things can they do to help, or what have they done that is not helpful?
4. Are you involved in any school activities, like sports, plays, clubs, etc.? If yes, can you describe them?
5. Do you ever feel limited by CF when you participate in these activities or because you can't participate in these activities?
6. Is it hared to balance school activities and school work with CF?
7. How do other people react to your involvement in these activities?
8. How important is school work and school activities to you?
 
9. What is your social life like? How has it evolved since childhood?
10. Do you have a large group of acquaintances or a small group of close friends?
11. Has CF limited your social life? In what ways? Do you have any specific examples?
12. How much do you tell your friends about your disease? Is it hard to tell them?
13. Have any of your relationships been affected by disclosure?
14. As you get older, does it get any easier to tell people?
 
15. Do you have a significant other?
16. How much do you share about CF with significant others? When do you share this information?
17. Have you found it difficult to date? How?
18. What is the nature of your relationships- a few serious relationships, or many "less than serious" ?
19. Did you have a different experience with puberty than your peers?
20. Have you found it difficult to get close to members of the opposite sex?
 
Thanks so much!! If you even wanted to answer like one question or just a few questions that would be awesome!
 

MissAlexsBP
New Member


Date Joined Nov 2006
Total Posts : 8
   Posted 11/11/2006 8:25 PM (GMT -7)   

Hello!

Let me just start off my saying my name is Alex. I don't know if you still need any information for your paper, as I do realize that this was posted around a month ago, but I'm new to the forum board and I am quite open about my CF, so if you still need it here's the information! =0)

 

1. What is your gender, age, school year and condition/manifestation of CF? I am a female, 18, a Senior in highschool and my CF affects my respiratory and digestive system
2. Is it hard to get school work done? What are the biggest challenges regarding school work?  Typically, I don't have problems with getting school work done, although when I do have to be hospitalized it can get a bit tough, especially when the teachers at my school don't really have their act together, so essentially when I get back from the hospital stay I am around 2 weeks behind everyone. But When I'm not in the hospital, I keep up with the work.
3. Do your teachers understand your circumstances? What things can they do to help, or what have they done that is not helpful? yes, I go to a very small school and almost everyone knows that I have CF, and they've always been very supportive of it.  Once the teachers learn a bit about CF they still don't always get the entire situation, but they are quite understanding. I also have a 504 plan place, which is essentially, special accomidations for school, with things like I can drink whenever I want in the classroom, I can eat whenever I need to in the classroom, I may excuse myself to the bathroom if I need to for a coughing fit etc. I can't really think of anything in particular that a teacher has done or said that has been too bad.
4. Are you involved in any school activities, like sports, plays, clubs, etc.? If yes, can you describe them? Yes, I am involved with activites, Ironically I am on the local voluenteer Fire Department (Which is very frowned on by my doctors, but I want to do it, and for me it's a quality of life thing, I'm not not going to let CF stop me, until it become a big issue, Don't know if this is the smartest philosophy, but hey...) and I also snowboard (Quite pathetically, but I still do) and When i was in middle school I was on my schools soccer team.
5. Do you ever feel limited by CF when you participate in these activities or because you can't participate in these activities? I am beginning to, because, you probably know that CF is a progressive disease, and that's very true.  I find that the older I get, the more out of breath I get, faster.  I know I should be more active in general, but when you can't breath very well just from walking a bit, it's not the most enjoyable thing to do...
6. Is it hared to balance school activities and school work with CF? Not too much, at least for me, when I'm in school (as noted before) it's obviously easier.  I will be honest, and say that I'm not the best at doing all of my meds, just because most of the nebulizers take about 15 minutes each, so when I'm on 3 or 5 a day, that's a lot of time, So in th morning I actually don't do the nebs because That would require getting up a earlier than I already do, and I feel that my sleep is important...I hope that that answers your question!
7. How do other people react to your involvement in these activities? Like I said before, my doctors don't like the fact that I'm on a fire department but the department it's self is very supportive and so are my friends
8. How important is school work and school activities to you? School and doing things outside of school is quite important to me, Im pretty social
 
9. What is your social life like? How has it evolved since childhood? I am very social, and I have great, supportive friends, and a great boyfriend.  Most of my friends in the begining have questions when they find out about CF, but then they get used to it, and don't bat an eye at it. 
10. Do you have a large group of acquaintances or a small group of close friends? Both. I know alot of people who I would consider to be acquaintances, but I do have a group of probably 10 friends that I am really close to
11. Has CF limited your social life? In what ways? Do you have any specific examples? I don't think that it has at all to be honest.  Maybe it's because Im from a small town. But it seems like my friends care about my CF, but not in a bad way.
12. How much do you tell your friends about your disease? Is it hard to tell them? I am very open about it, and I always have been.  If it's someone that I am close with or I feel confident that I will be close with, I don't mind talking about it at all.  I'll tell them however much they want to hear or know. So, I don't find it hard to say. Some things are awkward, but whatever, if they want to know, I'm more than happy to tell them.
13. Have any of your relationships been affected by disclosure? Not that I know of.
14. As you get older, does it get any easier to tell people? No, but that is probably because I have never had a problem telling people ever since I was young, so it's not any harder...
 
15. Do you have a significant other? yes, I have a boyfriend
16. How much do you share about CF with significant others? When do you share this information? I will tell them however much they want to hear.  sometimes it is tough telling them some of it, just because they feel bad, or get sad, but it's a part of me, and my boyfriend has been great with it.  I told him actually before we started to date, because we were just becoming friends when we decided that we wanted to date, so he knew right off the bat.  He's very sweet about it, and comes and visits me when I'm in the hospital, he's trying to learn how to give me PT, and he keeps me company when I have to go oustide or something for a coughing fit (you know...normal couple stuff...haha)
17. Have you found it difficult to date? How? No, I have not
18. What is the nature of your relationships- a few serious relationships, or many "less than serious" ? I have had 2 semi serious, and 1 pretty serious
19. Did you have a different experience with puberty than your peers? I don't think so, I am shorter (I'm 4'11") and some of that is genetics, and some of that is the CF, but as far as puberty goes, I don't think I was very different from my friends
20. Have you found it difficult to get close to members of the opposite sex? No, i have not...but maybe that's just because I found a wicked sweet guy
 
Once again, I don't know if you still need this information or not, but if you do here it is, and even if you don't here's some more info for you, if you need anymore!!
Please feel free to contact me if you have any more questions!
 

cudzy
New Member


Date Joined Oct 2006
Total Posts : 3
   Posted 11/12/2006 3:57 PM (GMT -7)   
Hey Alex,
I haven't finished my project yet so the information you gave me is extremely helpful! Thanks a lot for putting the time in!!
My interest in chronic illness came from growing up with my younger sister having pulonary fibrosis- it is very similar to CF but really rare in children. I can understand a lot of the stuff you are probably going through, so if you ever want to talk feel free to email me at cudmore@bc.edu.
Thanks again for your help!!
Take care : )
Becky
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