coping with CF and the truth

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anonymous

New member
Do some of you find that the longer you hide it, the harder it gets to tell someone about your CF? That's what I found when it was 'top secret' that I had CF and I finally shared it with (well shocked) a few people.

I too am married & the in laws didn't know when we got married (short engagement-long story), but I wrote a letter to my hubby's parents and siblings explaining that I have CF and what it is shortly after marriage. I can't imagine hiding it from them for 4.5 years!
It's interesting to see the different views<img src="i/expressions/rose.gif" border="0">
 
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anonymous

New member
Hi,

I did never try to hide it. I take my pills, when I eat something and - since I need insulin - I do also control my bloodsugar and "give me the insulin-shot" everywhere, when I need it. I don´t want to go to a (possibly dirty) toilet room in a restaurant to take the pills and insulin! If people ask, I tell them: I think we don´t have to be ashamed to be sick and hide it and if more people know about it, its better! If you are sitting in a wheelchair, you can´t hide your illness either and why should you?!

Uli,43,Germany
 
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Emily65Roses

New member
"I guess I haven't dealt with it enough yet to know to handle myself when telling people. I want to maybe write her a letter, but I don't know how professional that would be either."

I don't see why writing a letter and leaving it in her mailbox or on her desk should be an issue. Write exactly that... most people with CF knowingly deal with it all their lives, and you've only just found out, so you're having trouble adjusting. This is the easiest way for you to tell her, etc. Just know that if you do, she's liable to come to you to talk about it after she's read it. But if you really want her to know, for the sake of your job or whatever else, as long as you can handle her coming to talk to you after she's read about it, I don't see why a letter would be wrong. Someone correct me if I'm wrong, I'm hardly big into the working world, but it seems like it'd be okay.
 
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Jo20784

New member
I admire everyone that can cope with having Cf i have not long turned 21 and i seriosuly can't cope with it anymore it just hits me so hard now . i refused treatment for a bad chest infection the other day cos i am sick to death of having needles stuck in my arm i feel healthy as well and my lungs dont feel bad it may sound so stupid to refuse it but i feels right at the moment i am not in the right mind to have iv's right now . plus i am taking my nebuliser twice a day and doing my physio now three times a day i wanna see how i go i have also said yes to a port which is a huge leap for me anyways keep smilin to u all love from Jo xxxx
 
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anonymous

New member
Dear Chipped Away,

There is no legal requirement that you must disclose your illness to your boss. I, however, choose to disclose it to my employer given that I work in an environment that requires the handling of accounts and tight deadlines. Transitioning an assignment in the event of illness is crucial in my line of work. If it hadn't been for that element, my employer would still not know.

Do not feel pressured to disclose the information. You will know when the time is right.

Dx@35.
 
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Mockingbird

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Hi,
I did never try to hide it. I take my pills, when I eat something and - since I need insulin - I do also control my bloodsugar and "give me the insulin-shot" everywhere, when I need it. I don´t want to go to a (possibly dirty) toilet room in a restaurant to take the pills and insulin! If people ask, I tell them: I think we don´t have to be ashamed to be sick and hide it and if more people know about it, its better! If you are sitting in a wheelchair, you can´t hide your illness either and why should you?!
Uli,43,Germany<hr></blockquote>

Um, I think its because we can potentially hide our illness is the reason a lot of us try to. I mean, who wants to be treated like someone in a wheelchair? Not even people in wheel chairs like being treated like that! =-)

What I've found is, telling people about my CF dramatically changes my relationship with them. It's one of those things where once you talk about it you can never go back. I'm not saying it is immediately good or bad; that sort of thing depends on the people involved.... And because it's so unpredictable like that it can make the decision to tell someone a little more daunting.

Of course i know it's foolish of me to try to hide my CF from other people... and the linger I hide it the harder it will be for me to bring it out in the open. I never said it made any sense, thinking this way, but everyone knows the brain doesn't always choose the most logical option, especially for people like me who operate more on feelings or instinct.

No, really, i think it's just a personality thing; some people can see how it makes more sense just to get things out in the open, while other prefer to keep to themselves... for reasons I can't really explain, even though I'm one of them. =-) That's all.
 
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anonymous

New member
hey there just reading ur e mial there, and it is exactly the same with me.... this is the first time i have been on here, and i am finding it very interesting
 
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anonymous

New member
hey there i am reading thur all of the e mials on this site and this is the first time i have ever been on this site and i am finding it very interesting, iof u ever want to e mial to chat just e mial away..
dave582_saunders@msn.com
 
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TCNJcystic

New member
Good topic. For me, I let anyone know who I think needs to know, and that's a lot of people. I feel like CF is a huge part of me, and in order for anyone to know me, I tell them about the CF. It's just the way I look at things I guess. I'm going to tell a girl at college tonight because we've been hanging out a lot lately and I think it's time she knows. I guess I understand why some people would want to hide it, but it's just not how I'd like to do it.
 
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princessjdc

New member
Ive been at my work for 5 years and Ive only told those who I thought should know. My husband I told when we started seeing each other a lot. I felt that if we were going to go further in our ralationship, then I should let him know about my diseae, that way if he wanted he could of left me and it I wouldnt of been heart broken. Im glad he stayed with me thou cause he makes me very happy. I guess you can say that Im kinda secretive about cf, I only tell those that I think is necesary to know.
 
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princessjdc

New member
Ive been at my work for 5 years and Ive only told those who I thought should know. My husband I told when we started seeing each other a lot. I felt that if we were going to go further in our ralationship, then I should let him know about my diseae, that way if he wanted he could of left me and it I wouldnt of been heart broken. Im glad he stayed with me thou cause he makes me very happy. I guess you can say that Im kinda secretive about cf, I only tell those that I think is necesary to know.
 
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anonymous

New member
Hi, I am a 26 yr. old female with CF,
When i cough and someone looks at me funny and people think i have a cold or that i smoke, I tell the right away that i have a hereditary disease and that they can't catch it. I have been coughing my whole life.
I take it as an insult when people think i have smokers cough. Most people that smoke are born with perfect lungs. That i would die to have and they just fill them up with cigarettes and abuse them and still get to live longer than me not doing none of that.
So i have no problem telling people.
 
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anonymous

New member
hey there i am 19 and i got told i had cf about a year ago now, if u ever want to chat some time to speak about things u can e mial me if u want, i woukld like to speak to some one else with the same problems as me... dave582_saunders@msn.com
 
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JustDucky

New member
What an excellent question!! I was just diagnosed with CF, literally a few months ago and I am 33...I am fairly open with it, I have neuro disease which does require me to use a vent and a wheelchair, my hair could be flaming pink and folks would notice the chair and vent first LOL! It doesn't bother me....not like it used to. My family knows about my diagnosis as well as close friends, but really that's all right now. If someone asks about it, I tell them, that way they can understand....educating some people is far better than ignorance. I take pancraselipase with my meals, so I tend to get asked questions sometimes. My point is...if they ask, I answer honestly. Many people do not, they tend to be more curious about my hardware (wheelchair, vent etc....) than anything else, especially the kids.
Hugs to all,
Cepaciagal
 
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anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Do some of you find that the longer you hide it, the harder it gets to tell someone about your CF?


Yes!! I was secretive about my CF when I was younger. My close friends, family and some teachers in grade school knew. However, casual friends did not and the longer I went without telling them the harder it got! Finally I just got out of touch with some because that seemed easier than explaining myself. Seems kinda stupid now!!
I did always tell my employers though, because I would be gone for up to a month in the hospital! Thought it was best to be up front. Now that I've gotten older I don't hide it like I did. For one thing it's hard to hide that something's wrong when your wearing O2!!! But it is awkward when you see someone in Walmart that you haven't seen for awhile and you're wearing O2 and they're like, What's Wrong??? I guess I always wanted to hide it because I didn't want to be seen as weak or one of the sick people! Oh well!

Martha CF, 30
 
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