Learning about CF in school

smiles123 · Aug 31, 2008

My new science teacher for this year just sent us an email. CF is a part of the curriculum for this year, so she sent us a heads up. I know that for some of you, this would not be a big deal, but for me, it is. I don't talk about CF with my friends. What if I started crying or something when she talked about the life expectancy? CF is hard to deal with. Having CF talked about like it is just another disease and the people who have it are victims defined by the disease really bothers me. I mean, I don't know if that's how it will be talked about, but if it was talked about like that, then I would definatly have to offer everything I have to say about the disease: all the new treatments, day-to-day life, and, most importantly, NOT letting the disease define me. I am more than just a statistic. But I couldn't say any of those things without people suspecting something, and I'm not sure if I'm ready for them to know I have CF, and me saying those things about CF would lead to awkward questions and I don't want to lie, or tell the truth.

But on the other hand, I would kind of like to learn about CF from a scientific point of view (genes, proteins, etc). And I kind of might maybe want other people to know I have the disease, and this would be the perfect time to bring it up. But I don't know...the harm in telling my friends is this: CF is a huge part of my life, and it is so hard to deal with sometimes. My friends would never understand. Also I don't want every hospital stay to turn into a huge extravaganza, and even though I could tell them not to make a big deal out of hospital stays it still would turn into a big deal anyway...you know?

So, in this hugely long message (lol) I guess what I'm asking is:
1.Should I tell my teacher I don't want to learn about CF in school? She'd probably say yes, it isn't a huge topic.
2.Should I offer everything I know about CF when (if) we learn about it and then tell my friends I have CF, even though I'm not sure if I'm ready? Or offer everything I know and lie? Or...IDk, any other suggestions.
3.Is it really such a big deal to learn about CF in school? I know I'm making a big deal out of something so small. Is it awkward or anything?
4. Anything else that relates to this message, idk if I forgot anything lol

I'd love any advice, thanks a lot!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

smiles123 · Aug 31, 2008

My new science teacher for this year just sent us an email. CF is a part of the curriculum for this year, so she sent us a heads up. I know that for some of you, this would not be a big deal, but for me, it is. I don't talk about CF with my friends. What if I started crying or something when she talked about the life expectancy? CF is hard to deal with. Having CF talked about like it is just another disease and the people who have it are victims defined by the disease really bothers me. I mean, I don't know if that's how it will be talked about, but if it was talked about like that, then I would definatly have to offer everything I have to say about the disease: all the new treatments, day-to-day life, and, most importantly, NOT letting the disease define me. I am more than just a statistic. But I couldn't say any of those things without people suspecting something, and I'm not sure if I'm ready for them to know I have CF, and me saying those things about CF would lead to awkward questions and I don't want to lie, or tell the truth.

But on the other hand, I would kind of like to learn about CF from a scientific point of view (genes, proteins, etc). And I kind of might maybe want other people to know I have the disease, and this would be the perfect time to bring it up. But I don't know...the harm in telling my friends is this: CF is a huge part of my life, and it is so hard to deal with sometimes. My friends would never understand. Also I don't want every hospital stay to turn into a huge extravaganza, and even though I could tell them not to make a big deal out of hospital stays it still would turn into a big deal anyway...you know?

So, in this hugely long message (lol) I guess what I'm asking is:
1.Should I tell my teacher I don't want to learn about CF in school? She'd probably say yes, it isn't a huge topic.
2.Should I offer everything I know about CF when (if) we learn about it and then tell my friends I have CF, even though I'm not sure if I'm ready? Or offer everything I know and lie? Or...IDk, any other suggestions.
3.Is it really such a big deal to learn about CF in school? I know I'm making a big deal out of something so small. Is it awkward or anything?
4. Anything else that relates to this message, idk if I forgot anything lol

I'd love any advice, thanks a lot!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

smiles123 · Aug 31, 2008

My new science teacher for this year just sent us an email. CF is a part of the curriculum for this year, so she sent us a heads up. I know that for some of you, this would not be a big deal, but for me, it is. I don't talk about CF with my friends. What if I started crying or something when she talked about the life expectancy? CF is hard to deal with. Having CF talked about like it is just another disease and the people who have it are victims defined by the disease really bothers me. I mean, I don't know if that's how it will be talked about, but if it was talked about like that, then I would definatly have to offer everything I have to say about the disease: all the new treatments, day-to-day life, and, most importantly, NOT letting the disease define me. I am more than just a statistic. But I couldn't say any of those things without people suspecting something, and I'm not sure if I'm ready for them to know I have CF, and me saying those things about CF would lead to awkward questions and I don't want to lie, or tell the truth.

But on the other hand, I would kind of like to learn about CF from a scientific point of view (genes, proteins, etc). And I kind of might maybe want other people to know I have the disease, and this would be the perfect time to bring it up. But I don't know...the harm in telling my friends is this: CF is a huge part of my life, and it is so hard to deal with sometimes. My friends would never understand. Also I don't want every hospital stay to turn into a huge extravaganza, and even though I could tell them not to make a big deal out of hospital stays it still would turn into a big deal anyway...you know?

So, in this hugely long message (lol) I guess what I'm asking is:
1.Should I tell my teacher I don't want to learn about CF in school? She'd probably say yes, it isn't a huge topic.
2.Should I offer everything I know about CF when (if) we learn about it and then tell my friends I have CF, even though I'm not sure if I'm ready? Or offer everything I know and lie? Or...IDk, any other suggestions.
3.Is it really such a big deal to learn about CF in school? I know I'm making a big deal out of something so small. Is it awkward or anything?
4. Anything else that relates to this message, idk if I forgot anything lol

I'd love any advice, thanks a lot!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

smiles123 · Aug 31, 2008

My new science teacher for this year just sent us an email. CF is a part of the curriculum for this year, so she sent us a heads up. I know that for some of you, this would not be a big deal, but for me, it is. I don't talk about CF with my friends. What if I started crying or something when she talked about the life expectancy? CF is hard to deal with. Having CF talked about like it is just another disease and the people who have it are victims defined by the disease really bothers me. I mean, I don't know if that's how it will be talked about, but if it was talked about like that, then I would definatly have to offer everything I have to say about the disease: all the new treatments, day-to-day life, and, most importantly, NOT letting the disease define me. I am more than just a statistic. But I couldn't say any of those things without people suspecting something, and I'm not sure if I'm ready for them to know I have CF, and me saying those things about CF would lead to awkward questions and I don't want to lie, or tell the truth.

But on the other hand, I would kind of like to learn about CF from a scientific point of view (genes, proteins, etc). And I kind of might maybe want other people to know I have the disease, and this would be the perfect time to bring it up. But I don't know...the harm in telling my friends is this: CF is a huge part of my life, and it is so hard to deal with sometimes. My friends would never understand. Also I don't want every hospital stay to turn into a huge extravaganza, and even though I could tell them not to make a big deal out of hospital stays it still would turn into a big deal anyway...you know?

So, in this hugely long message (lol) I guess what I'm asking is:
1.Should I tell my teacher I don't want to learn about CF in school? She'd probably say yes, it isn't a huge topic.
2.Should I offer everything I know about CF when (if) we learn about it and then tell my friends I have CF, even though I'm not sure if I'm ready? Or offer everything I know and lie? Or...IDk, any other suggestions.
3.Is it really such a big deal to learn about CF in school? I know I'm making a big deal out of something so small. Is it awkward or anything?
4. Anything else that relates to this message, idk if I forgot anything lol

I'd love any advice, thanks a lot!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

smiles123 · Aug 31, 2008

My new science teacher for this year just sent us an email. CF is a part of the curriculum for this year, so she sent us a heads up. I know that for some of you, this would not be a big deal, but for me, it is. I don't talk about CF with my friends. What if I started crying or something when she talked about the life expectancy? CF is hard to deal with. Having CF talked about like it is just another disease and the people who have it are victims defined by the disease really bothers me. I mean, I don't know if that's how it will be talked about, but if it was talked about like that, then I would definatly have to offer everything I have to say about the disease: all the new treatments, day-to-day life, and, most importantly, NOT letting the disease define me. I am more than just a statistic. But I couldn't say any of those things without people suspecting something, and I'm not sure if I'm ready for them to know I have CF, and me saying those things about CF would lead to awkward questions and I don't want to lie, or tell the truth.
 
 But on the other hand, I would kind of like to learn about CF from a scientific point of view (genes, proteins, etc). And I kind of might maybe want other people to know I have the disease, and this would be the perfect time to bring it up. But I don't know...the harm in telling my friends is this: CF is a huge part of my life, and it is so hard to deal with sometimes. My friends would never understand. Also I don't want every hospital stay to turn into a huge extravaganza, and even though I could tell them not to make a big deal out of hospital stays it still would turn into a big deal anyway...you know?
 
 So, in this hugely long message (lol) I guess what I'm asking is:
 1.Should I tell my teacher I don't want to learn about CF in school? She'd probably say yes, it isn't a huge topic.
 2.Should I offer everything I know about CF when (if) we learn about it and then tell my friends I have CF, even though I'm not sure if I'm ready? Or offer everything I know and lie? Or...IDk, any other suggestions.
 3.Is it really such a big deal to learn about CF in school? I know I'm making a big deal out of something so small. Is it awkward or anything?
 4. Anything else that relates to this message, idk if I forgot anything lol
 
 
 I'd love any advice, thanks a lot!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

welshwitch · Sep 1, 2008

Hey....First of all, I REALLY want to say that I can completely relate to your situation. When I was in high school (oh, 10+ years ago!) the same thing happened to me. Out of nowhere, in sophomore bio class, we started a unit on genetics. CF was touched on a little bit in the book, so I didn't sweat it too much. I too was REALLY secretive about my CF and wouldn't dare breath a word about it to my friends. However, here is my experience, perhaps you can learn from it/ get some insight on how I handled it, and perhaps learn from the mistakes I made...in retrospect I wish I had handled it better.

The teacher of course didn't know anything about me or my CF (she was a *horrible* teacher.) She goes thru the genetics about CF, the recessive genes, etc. and talks about how there is a 1 out of 4 chance that a child with 2 carrier parents will have the disease. She completely painted a picture of a victim, too, which I hated. I of course tried to ignore the material, because it's too too easy to block out anything that is too painful to hear. (Note: the class was completely asleep at this point, did I mention she was a terrible teacher?)Next, to burn up some class time, she puts on a COMPLETELY OUTDATED VIDEO ABOUT CF for the class. I Mean, this video must've been from the 80s. The video was completely horribly depressing--it showed a boy with CF who was basically "end stage" and spent his days attached to an oxygen machine and an IV pole. The teacher said that people with CF die in their teens. I practically left class in tears. I mean, that wasn't me. I played Varsity soccer and was in school plays. My PFTs were in the 100s (note: they still are!) and I wasn't sick at all, save the occasional extra dr. appointment or intense cold that knocked me out for an extra day.

Now, there was another girl in my school who had CF. She was 1 year younger than me, and when we were little kids we played together all the time--our parents attended charity functions together and could relate to each other and were great friends. This is before the days of cross infection was known. Anyways, I didn't really associate with her at this point, only for the sheer purpose of drifting apart. Anyways, this girl on my soccer team starts gossiping about this girl. She said, "Did you know that Sarah is dying?" and the other girls on the team started freaking out. "What is she dying from" asked another girl. "She has cystic fibrosis." Some of the girls on my team didn't know what it was. "You learn about it in bio class," says another girl. THE SAME FRICKIN' BIO CLASS THAT I WAS IN! This rumour was never squelched and I remained silent and didn't say a word.

Long story short (OK, sorry this is waaaay too long of a response!) I let fear dictate what COULD have been an opportunity to teach, to educate, and to clear up any obvious misconceptions that were flying around about CF. Being a high school student, I lacked the maturity and the knowledge to speak up. This in turn led to me continuing to feel victimized. Does that make sense?

Anyways, it sounds like your teacher has it together, if she's already emailing you at this point about the curriculum....hopefully she is an accessible and "together" person who has the common sense to be able to handle being sensitive around this issue for you. I think you can handle this in a variety of ways:

1. You can say nothing, and do nothing, and most likely the class would go over CF in a text-book manner, much like my experience, and you would run the risk of the teacher presenting CF in an inaccurate way--trust me, you'd survive.

2. You can approach the teacher, either in an email or in person: much like she gave YOU the "heads up" you can give HER a "heads up" that you have CF and it's a rough topic for you. You can ask her to keep it confidential. Trust me, part of the reason the teacher is giving you this info in advance is so that everyone knows what they're getting into this semester so there are no surprises, that sounds pretty smart to me.

3. You can (and believe me, this is the "gutsiest" option, there is no way I could have done this in high school) use yourself as a real life example of CF and let the class know you have it and even go into some detail about the day-to-day life with CF. You are going to know SO MUCH MORE about CF than anyone else in the class--you could use it to your advantage and the teacher would be so so so impressed.

4. YOu could do any combination of things. I think most important you should know that just because this topic is coming up in school you do NOT need to "out" yourself. Telling people about CF is a very personal journey, one that I have not completed myself, and it's best to do it once you've worked it out for yourself so that you can tell people about it without crying. That's what this website is for!

Anyways.....SORRY THIS WAS SO LONG it's just a very similar thing that I went thru and I wish that I had been more together with my CF. Good luck to you! One thing I've learned about telling people about my disease is that it's usually a waaaaaay bigger deal to you than it is for them. Everyone has crap that they have to deal with in their lives, CF is what you have to deal with.

welshwitch · Sep 1, 2008

Hey....First of all, I REALLY want to say that I can completely relate to your situation. When I was in high school (oh, 10+ years ago!) the same thing happened to me. Out of nowhere, in sophomore bio class, we started a unit on genetics. CF was touched on a little bit in the book, so I didn't sweat it too much. I too was REALLY secretive about my CF and wouldn't dare breath a word about it to my friends. However, here is my experience, perhaps you can learn from it/ get some insight on how I handled it, and perhaps learn from the mistakes I made...in retrospect I wish I had handled it better.

The teacher of course didn't know anything about me or my CF (she was a *horrible* teacher.) She goes thru the genetics about CF, the recessive genes, etc. and talks about how there is a 1 out of 4 chance that a child with 2 carrier parents will have the disease. She completely painted a picture of a victim, too, which I hated. I of course tried to ignore the material, because it's too too easy to block out anything that is too painful to hear. (Note: the class was completely asleep at this point, did I mention she was a terrible teacher?)Next, to burn up some class time, she puts on a COMPLETELY OUTDATED VIDEO ABOUT CF for the class. I Mean, this video must've been from the 80s. The video was completely horribly depressing--it showed a boy with CF who was basically "end stage" and spent his days attached to an oxygen machine and an IV pole. The teacher said that people with CF die in their teens. I practically left class in tears. I mean, that wasn't me. I played Varsity soccer and was in school plays. My PFTs were in the 100s (note: they still are!) and I wasn't sick at all, save the occasional extra dr. appointment or intense cold that knocked me out for an extra day.

Now, there was another girl in my school who had CF. She was 1 year younger than me, and when we were little kids we played together all the time--our parents attended charity functions together and could relate to each other and were great friends. This is before the days of cross infection was known. Anyways, I didn't really associate with her at this point, only for the sheer purpose of drifting apart. Anyways, this girl on my soccer team starts gossiping about this girl. She said, "Did you know that Sarah is dying?" and the other girls on the team started freaking out. "What is she dying from" asked another girl. "She has cystic fibrosis." Some of the girls on my team didn't know what it was. "You learn about it in bio class," says another girl. THE SAME FRICKIN' BIO CLASS THAT I WAS IN! This rumour was never squelched and I remained silent and didn't say a word.

Long story short (OK, sorry this is waaaay too long of a response!) I let fear dictate what COULD have been an opportunity to teach, to educate, and to clear up any obvious misconceptions that were flying around about CF. Being a high school student, I lacked the maturity and the knowledge to speak up. This in turn led to me continuing to feel victimized. Does that make sense?

Anyways, it sounds like your teacher has it together, if she's already emailing you at this point about the curriculum....hopefully she is an accessible and "together" person who has the common sense to be able to handle being sensitive around this issue for you. I think you can handle this in a variety of ways:

1. You can say nothing, and do nothing, and most likely the class would go over CF in a text-book manner, much like my experience, and you would run the risk of the teacher presenting CF in an inaccurate way--trust me, you'd survive.

2. You can approach the teacher, either in an email or in person: much like she gave YOU the "heads up" you can give HER a "heads up" that you have CF and it's a rough topic for you. You can ask her to keep it confidential. Trust me, part of the reason the teacher is giving you this info in advance is so that everyone knows what they're getting into this semester so there are no surprises, that sounds pretty smart to me.

3. You can (and believe me, this is the "gutsiest" option, there is no way I could have done this in high school) use yourself as a real life example of CF and let the class know you have it and even go into some detail about the day-to-day life with CF. You are going to know SO MUCH MORE about CF than anyone else in the class--you could use it to your advantage and the teacher would be so so so impressed.

4. YOu could do any combination of things. I think most important you should know that just because this topic is coming up in school you do NOT need to "out" yourself. Telling people about CF is a very personal journey, one that I have not completed myself, and it's best to do it once you've worked it out for yourself so that you can tell people about it without crying. That's what this website is for!

Anyways.....SORRY THIS WAS SO LONG it's just a very similar thing that I went thru and I wish that I had been more together with my CF. Good luck to you! One thing I've learned about telling people about my disease is that it's usually a waaaaaay bigger deal to you than it is for them. Everyone has crap that they have to deal with in their lives, CF is what you have to deal with.

welshwitch · Sep 1, 2008

Hey....First of all, I REALLY want to say that I can completely relate to your situation. When I was in high school (oh, 10+ years ago!) the same thing happened to me. Out of nowhere, in sophomore bio class, we started a unit on genetics. CF was touched on a little bit in the book, so I didn't sweat it too much. I too was REALLY secretive about my CF and wouldn't dare breath a word about it to my friends. However, here is my experience, perhaps you can learn from it/ get some insight on how I handled it, and perhaps learn from the mistakes I made...in retrospect I wish I had handled it better.

The teacher of course didn't know anything about me or my CF (she was a *horrible* teacher.) She goes thru the genetics about CF, the recessive genes, etc. and talks about how there is a 1 out of 4 chance that a child with 2 carrier parents will have the disease. She completely painted a picture of a victim, too, which I hated. I of course tried to ignore the material, because it's too too easy to block out anything that is too painful to hear. (Note: the class was completely asleep at this point, did I mention she was a terrible teacher?)Next, to burn up some class time, she puts on a COMPLETELY OUTDATED VIDEO ABOUT CF for the class. I Mean, this video must've been from the 80s. The video was completely horribly depressing--it showed a boy with CF who was basically "end stage" and spent his days attached to an oxygen machine and an IV pole. The teacher said that people with CF die in their teens. I practically left class in tears. I mean, that wasn't me. I played Varsity soccer and was in school plays. My PFTs were in the 100s (note: they still are!) and I wasn't sick at all, save the occasional extra dr. appointment or intense cold that knocked me out for an extra day.

Now, there was another girl in my school who had CF. She was 1 year younger than me, and when we were little kids we played together all the time--our parents attended charity functions together and could relate to each other and were great friends. This is before the days of cross infection was known. Anyways, I didn't really associate with her at this point, only for the sheer purpose of drifting apart. Anyways, this girl on my soccer team starts gossiping about this girl. She said, "Did you know that Sarah is dying?" and the other girls on the team started freaking out. "What is she dying from" asked another girl. "She has cystic fibrosis." Some of the girls on my team didn't know what it was. "You learn about it in bio class," says another girl. THE SAME FRICKIN' BIO CLASS THAT I WAS IN! This rumour was never squelched and I remained silent and didn't say a word.

Long story short (OK, sorry this is waaaay too long of a response!) I let fear dictate what COULD have been an opportunity to teach, to educate, and to clear up any obvious misconceptions that were flying around about CF. Being a high school student, I lacked the maturity and the knowledge to speak up. This in turn led to me continuing to feel victimized. Does that make sense?

Anyways, it sounds like your teacher has it together, if she's already emailing you at this point about the curriculum....hopefully she is an accessible and "together" person who has the common sense to be able to handle being sensitive around this issue for you. I think you can handle this in a variety of ways:

1. You can say nothing, and do nothing, and most likely the class would go over CF in a text-book manner, much like my experience, and you would run the risk of the teacher presenting CF in an inaccurate way--trust me, you'd survive.

2. You can approach the teacher, either in an email or in person: much like she gave YOU the "heads up" you can give HER a "heads up" that you have CF and it's a rough topic for you. You can ask her to keep it confidential. Trust me, part of the reason the teacher is giving you this info in advance is so that everyone knows what they're getting into this semester so there are no surprises, that sounds pretty smart to me.

3. You can (and believe me, this is the "gutsiest" option, there is no way I could have done this in high school) use yourself as a real life example of CF and let the class know you have it and even go into some detail about the day-to-day life with CF. You are going to know SO MUCH MORE about CF than anyone else in the class--you could use it to your advantage and the teacher would be so so so impressed.

4. YOu could do any combination of things. I think most important you should know that just because this topic is coming up in school you do NOT need to "out" yourself. Telling people about CF is a very personal journey, one that I have not completed myself, and it's best to do it once you've worked it out for yourself so that you can tell people about it without crying. That's what this website is for!

Anyways.....SORRY THIS WAS SO LONG it's just a very similar thing that I went thru and I wish that I had been more together with my CF. Good luck to you! One thing I've learned about telling people about my disease is that it's usually a waaaaaay bigger deal to you than it is for them. Everyone has crap that they have to deal with in their lives, CF is what you have to deal with.

welshwitch · Sep 1, 2008

Hey....First of all, I REALLY want to say that I can completely relate to your situation. When I was in high school (oh, 10+ years ago!) the same thing happened to me. Out of nowhere, in sophomore bio class, we started a unit on genetics. CF was touched on a little bit in the book, so I didn't sweat it too much. I too was REALLY secretive about my CF and wouldn't dare breath a word about it to my friends. However, here is my experience, perhaps you can learn from it/ get some insight on how I handled it, and perhaps learn from the mistakes I made...in retrospect I wish I had handled it better.

The teacher of course didn't know anything about me or my CF (she was a *horrible* teacher.) She goes thru the genetics about CF, the recessive genes, etc. and talks about how there is a 1 out of 4 chance that a child with 2 carrier parents will have the disease. She completely painted a picture of a victim, too, which I hated. I of course tried to ignore the material, because it's too too easy to block out anything that is too painful to hear. (Note: the class was completely asleep at this point, did I mention she was a terrible teacher?)Next, to burn up some class time, she puts on a COMPLETELY OUTDATED VIDEO ABOUT CF for the class. I Mean, this video must've been from the 80s. The video was completely horribly depressing--it showed a boy with CF who was basically "end stage" and spent his days attached to an oxygen machine and an IV pole. The teacher said that people with CF die in their teens. I practically left class in tears. I mean, that wasn't me. I played Varsity soccer and was in school plays. My PFTs were in the 100s (note: they still are!) and I wasn't sick at all, save the occasional extra dr. appointment or intense cold that knocked me out for an extra day.

Now, there was another girl in my school who had CF. She was 1 year younger than me, and when we were little kids we played together all the time--our parents attended charity functions together and could relate to each other and were great friends. This is before the days of cross infection was known. Anyways, I didn't really associate with her at this point, only for the sheer purpose of drifting apart. Anyways, this girl on my soccer team starts gossiping about this girl. She said, "Did you know that Sarah is dying?" and the other girls on the team started freaking out. "What is she dying from" asked another girl. "She has cystic fibrosis." Some of the girls on my team didn't know what it was. "You learn about it in bio class," says another girl. THE SAME FRICKIN' BIO CLASS THAT I WAS IN! This rumour was never squelched and I remained silent and didn't say a word.

Long story short (OK, sorry this is waaaay too long of a response!) I let fear dictate what COULD have been an opportunity to teach, to educate, and to clear up any obvious misconceptions that were flying around about CF. Being a high school student, I lacked the maturity and the knowledge to speak up. This in turn led to me continuing to feel victimized. Does that make sense?

Anyways, it sounds like your teacher has it together, if she's already emailing you at this point about the curriculum....hopefully she is an accessible and "together" person who has the common sense to be able to handle being sensitive around this issue for you. I think you can handle this in a variety of ways:

1. You can say nothing, and do nothing, and most likely the class would go over CF in a text-book manner, much like my experience, and you would run the risk of the teacher presenting CF in an inaccurate way--trust me, you'd survive.

2. You can approach the teacher, either in an email or in person: much like she gave YOU the "heads up" you can give HER a "heads up" that you have CF and it's a rough topic for you. You can ask her to keep it confidential. Trust me, part of the reason the teacher is giving you this info in advance is so that everyone knows what they're getting into this semester so there are no surprises, that sounds pretty smart to me.

3. You can (and believe me, this is the "gutsiest" option, there is no way I could have done this in high school) use yourself as a real life example of CF and let the class know you have it and even go into some detail about the day-to-day life with CF. You are going to know SO MUCH MORE about CF than anyone else in the class--you could use it to your advantage and the teacher would be so so so impressed.

4. YOu could do any combination of things. I think most important you should know that just because this topic is coming up in school you do NOT need to "out" yourself. Telling people about CF is a very personal journey, one that I have not completed myself, and it's best to do it once you've worked it out for yourself so that you can tell people about it without crying. That's what this website is for!

Anyways.....SORRY THIS WAS SO LONG it's just a very similar thing that I went thru and I wish that I had been more together with my CF. Good luck to you! One thing I've learned about telling people about my disease is that it's usually a waaaaaay bigger deal to you than it is for them. Everyone has crap that they have to deal with in their lives, CF is what you have to deal with.

welshwitch · Sep 1, 2008

Hey....First of all, I REALLY want to say that I can completely relate to your situation. When I was in high school (oh, 10+ years ago!) the same thing happened to me. Out of nowhere, in sophomore bio class, we started a unit on genetics. CF was touched on a little bit in the book, so I didn't sweat it too much. I too was REALLY secretive about my CF and wouldn't dare breath a word about it to my friends. However, here is my experience, perhaps you can learn from it/ get some insight on how I handled it, and perhaps learn from the mistakes I made...in retrospect I wish I had handled it better.
 
 The teacher of course didn't know anything about me or my CF (she was a *horrible* teacher.) She goes thru the genetics about CF, the recessive genes, etc. and talks about how there is a 1 out of 4 chance that a child with 2 carrier parents will have the disease. She completely painted a picture of a victim, too, which I hated. I of course tried to ignore the material, because it's too too easy to block out anything that is too painful to hear. (Note: the class was completely asleep at this point, did I mention she was a terrible teacher?)Next, to burn up some class time, she puts on a COMPLETELY OUTDATED VIDEO ABOUT CF for the class. I Mean, this video must've been from the 80s. The video was completely horribly depressing--it showed a boy with CF who was basically "end stage" and spent his days attached to an oxygen machine and an IV pole. The teacher said that people with CF die in their teens. I practically left class in tears. I mean, that wasn't me. I played Varsity soccer and was in school plays. My PFTs were in the 100s (note: they still are!) and I wasn't sick at all, save the occasional extra dr. appointment or intense cold that knocked me out for an extra day.
 
 Now, there was another girl in my school who had CF. She was 1 year younger than me, and when we were little kids we played together all the time--our parents attended charity functions together and could relate to each other and were great friends. This is before the days of cross infection was known. Anyways, I didn't really associate with her at this point, only for the sheer purpose of drifting apart. Anyways, this girl on my soccer team starts gossiping about this girl. She said, "Did you know that Sarah is dying?" and the other girls on the team started freaking out. "What is she dying from" asked another girl. "She has cystic fibrosis." Some of the girls on my team didn't know what it was. "You learn about it in bio class," says another girl. THE SAME FRICKIN' BIO CLASS THAT I WAS IN! This rumour was never squelched and I remained silent and didn't say a word.
 
 Long story short (OK, sorry this is waaaay too long of a response!) I let fear dictate what COULD have been an opportunity to teach, to educate, and to clear up any obvious misconceptions that were flying around about CF. Being a high school student, I lacked the maturity and the knowledge to speak up. This in turn led to me continuing to feel victimized. Does that make sense?
 
 Anyways, it sounds like your teacher has it together, if she's already emailing you at this point about the curriculum....hopefully she is an accessible and "together" person who has the common sense to be able to handle being sensitive around this issue for you. I think you can handle this in a variety of ways:
 
 1. You can say nothing, and do nothing, and most likely the class would go over CF in a text-book manner, much like my experience, and you would run the risk of the teacher presenting CF in an inaccurate way--trust me, you'd survive.
 
 2. You can approach the teacher, either in an email or in person: much like she gave YOU the "heads up" you can give HER a "heads up" that you have CF and it's a rough topic for you. You can ask her to keep it confidential. Trust me, part of the reason the teacher is giving you this info in advance is so that everyone knows what they're getting into this semester so there are no surprises, that sounds pretty smart to me.
 
 3. You can (and believe me, this is the "gutsiest" option, there is no way I could have done this in high school) use yourself as a real life example of CF and let the class know you have it and even go into some detail about the day-to-day life with CF. You are going to know SO MUCH MORE about CF than anyone else in the class--you could use it to your advantage and the teacher would be so so so impressed.
 
 4. YOu could do any combination of things. I think most important you should know that just because this topic is coming up in school you do NOT need to "out" yourself. Telling people about CF is a very personal journey, one that I have not completed myself, and it's best to do it once you've worked it out for yourself so that you can tell people about it without crying. That's what this website is for!
 
 Anyways.....SORRY THIS WAS SO LONG it's just a very similar thing that I went thru and I wish that I had been more together with my CF. Good luck to you! One thing I've learned about telling people about my disease is that it's usually a waaaaaay bigger deal to you than it is for them. Everyone has crap that they have to deal with in their lives, CF is what you have to deal with.

Jane · Sep 1, 2008

We had this happen with Josh in school too. He is also very secretive about his CF. In Biology they did a unit on genetics that include cf on a video. The teacher was very aware of Josh's illness and was completely senstive to it. When the kids had to do a genetic illness project, she took cf off the list so it wouldn't be awkward for Josh to have to hear about it.

My advice is to have you and your parents call or meet with the teacher to discuss how it will be handled. All the details of CF doesn't have to be discussed during the unit. There are tons of other illness that they could highlight while still learning the genetics part. Josh also found that to be especially interesting.

Good luck.

Jane · Sep 1, 2008

We had this happen with Josh in school too. He is also very secretive about his CF. In Biology they did a unit on genetics that include cf on a video. The teacher was very aware of Josh's illness and was completely senstive to it. When the kids had to do a genetic illness project, she took cf off the list so it wouldn't be awkward for Josh to have to hear about it.

My advice is to have you and your parents call or meet with the teacher to discuss how it will be handled. All the details of CF doesn't have to be discussed during the unit. There are tons of other illness that they could highlight while still learning the genetics part. Josh also found that to be especially interesting.

Good luck.

Jane · Sep 1, 2008

We had this happen with Josh in school too. He is also very secretive about his CF. In Biology they did a unit on genetics that include cf on a video. The teacher was very aware of Josh's illness and was completely senstive to it. When the kids had to do a genetic illness project, she took cf off the list so it wouldn't be awkward for Josh to have to hear about it.

My advice is to have you and your parents call or meet with the teacher to discuss how it will be handled. All the details of CF doesn't have to be discussed during the unit. There are tons of other illness that they could highlight while still learning the genetics part. Josh also found that to be especially interesting.

Good luck.

Jane · Sep 1, 2008

We had this happen with Josh in school too. He is also very secretive about his CF. In Biology they did a unit on genetics that include cf on a video. The teacher was very aware of Josh's illness and was completely senstive to it. When the kids had to do a genetic illness project, she took cf off the list so it wouldn't be awkward for Josh to have to hear about it.

My advice is to have you and your parents call or meet with the teacher to discuss how it will be handled. All the details of CF doesn't have to be discussed during the unit. There are tons of other illness that they could highlight while still learning the genetics part. Josh also found that to be especially interesting.

Good luck.

Jane · Sep 1, 2008

We had this happen with Josh in school too. He is also very secretive about his CF. In Biology they did a unit on genetics that include cf on a video. The teacher was very aware of Josh's illness and was completely senstive to it. When the kids had to do a genetic illness project, she took cf off the list so it wouldn't be awkward for Josh to have to hear about it.
 
 My advice is to have you and your parents call or meet with the teacher to discuss how it will be handled. All the details of CF doesn't have to be discussed during the unit. There are tons of other illness that they could highlight while still learning the genetics part. Josh also found that to be especially interesting.
 
 Good luck.

laulau555 · Sep 1, 2008

hey I've also learned about CF in biology class. however, i'm not secretive about my CF and I find this to be easier. we talked about the genetics and my teacher knew I had it so didn't touch on it too much. we watched a movie about promising genetic treatment and she made the lesson more of a positive thing.

to solve everything, you could just tell your friends. the more educated they are, the more likely they are to understand. my friends have known since I was little so they are used to it, so it might be harder to introduce it now. but they will have to find out sometime, if you are missing school and stuff? if you aren't prepared to tell them, then don't do something you don't want to do.if you don't want your teacher to teach it, then tell her. but i would highly suggest you tell your closest friends and in a way that makes them understand how it effects YOU. it would make problems like this one much easier to deal with.

laulau555 · Sep 1, 2008

hey I've also learned about CF in biology class. however, i'm not secretive about my CF and I find this to be easier. we talked about the genetics and my teacher knew I had it so didn't touch on it too much. we watched a movie about promising genetic treatment and she made the lesson more of a positive thing.

to solve everything, you could just tell your friends. the more educated they are, the more likely they are to understand. my friends have known since I was little so they are used to it, so it might be harder to introduce it now. but they will have to find out sometime, if you are missing school and stuff? if you aren't prepared to tell them, then don't do something you don't want to do.if you don't want your teacher to teach it, then tell her. but i would highly suggest you tell your closest friends and in a way that makes them understand how it effects YOU. it would make problems like this one much easier to deal with.

laulau555 · Sep 1, 2008

hey I've also learned about CF in biology class. however, i'm not secretive about my CF and I find this to be easier. we talked about the genetics and my teacher knew I had it so didn't touch on it too much. we watched a movie about promising genetic treatment and she made the lesson more of a positive thing.

to solve everything, you could just tell your friends. the more educated they are, the more likely they are to understand. my friends have known since I was little so they are used to it, so it might be harder to introduce it now. but they will have to find out sometime, if you are missing school and stuff? if you aren't prepared to tell them, then don't do something you don't want to do.if you don't want your teacher to teach it, then tell her. but i would highly suggest you tell your closest friends and in a way that makes them understand how it effects YOU. it would make problems like this one much easier to deal with.

laulau555 · Sep 1, 2008

hey I've also learned about CF in biology class. however, i'm not secretive about my CF and I find this to be easier. we talked about the genetics and my teacher knew I had it so didn't touch on it too much. we watched a movie about promising genetic treatment and she made the lesson more of a positive thing.

to solve everything, you could just tell your friends. the more educated they are, the more likely they are to understand. my friends have known since I was little so they are used to it, so it might be harder to introduce it now. but they will have to find out sometime, if you are missing school and stuff? if you aren't prepared to tell them, then don't do something you don't want to do.if you don't want your teacher to teach it, then tell her. but i would highly suggest you tell your closest friends and in a way that makes them understand how it effects YOU. it would make problems like this one much easier to deal with.

laulau555 · Sep 1, 2008

hey I've also learned about CF in biology class. however, i'm not secretive about my CF and I find this to be easier. we talked about the genetics and my teacher knew I had it so didn't touch on it too much. we watched a movie about promising genetic treatment and she made the lesson more of a positive thing.
 
 to solve everything, you could just tell your friends. the more educated they are, the more likely they are to understand. my friends have known since I was little so they are used to it, so it might be harder to introduce it now. but they will have to find out sometime, if you are missing school and stuff? if you aren't prepared to tell them, then don't do something you don't want to do.if you don't want your teacher to teach it, then tell her. but i would highly suggest you tell your closest friends and in a way that makes them understand how it effects YOU. it would make problems like this one much easier to deal with.

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