Announcing CF to the world

[rosesixtyfive]

Recently, my niece copied a picture from my Facebook page and put it up on her own page asking people to pray for my child and announcing that he had CF. I very kindly asked her to please take it down as she has 800 friends and some day my little boy will be a teenager and may not want CF announced. She did take it down, but apparently her feelings were very hurt. I was actually the one questioned by my family. I felt like I was the one being attacked. I was made to feel like I was ashamed of my child for having CF and what was wrong with me. I was told that CF wasn't something you could hide. My husband and I have an agreement, don't hide it, be open about it, but don't announce it on public forums like Facebook. I think we have a pretty healthy approach to it. I want by child to be open about CF but I know that one day he will be a teenager and I don't want to take away all of his choices. He may choose to first let people get to know him, and then tell him has CF later or whatever he chooses. I know how difficult it is to be a teenager. The thing is, we live in such a small town, I know everyone will know, and we have to teach him just to say, "Yeah, I have CF, but it's okay." But I also don't think we should announce it publicly. What are your opinions about this? It has just caused all kinds of bad feelings, and we sure don't need any negative vibes right now. rosesixtyfive, mother of 3 year old boy, ddf508

 

[Simba15]

wow that was inappropriate of her! When I told my sister she jumped on the phone and called all her kids and told them. I felt that was my place to do that. FB is worse though. You are a right. It is your son't choice - not other peoples.

 

[AggieGeologist]

I've been dealing with CF for almost 28 years now and I would have to say that somebody posting on Facebook about your child having CF should be the least of your worries. And I would have to agree with your family about this. You should want people to know about your son's CF so they may pray for him! Having CF is most certainly something that you can't hide and by asking her to take it off Facebook is acting like you are ashamed that your son has CF as people have said to you already. It could also send the wrong message to your son when he is old enough to understand his situation. I know you think you are protecting him by this behavior but in the future this behavior will only hinder him. If you act like CF should be hidden it gives him the message that he has a weakness that should be hidden from the world and that WILL make him weak. He may start withdrawing from social events because he feels like he should be ashamed of his CF instead of embracing it and taking charge of it. You want him to be able to say to people who question it, "Yeah, I have CF...sooo?" Now I'm not saying you should tell every single person you come in contact with but the more prayers he has the better off he is! The thing that baffles me about normal people is that they act like just because we have a disease we are some kind of deformed creature that needs to wear a "normal" mask to hide the ugliness within us. You need to teach your son that he is NORMAL and that having to do breathing treatments and take lots of meds just helps him to live a normal life. As a child growing up with CF I was never allowed to use CF as an excuse. I was expected to be like every other kid out there and I was expected to get good grades and do my chores, etc. My parents wouldn't even allow me to file with Students with Disabilities in college because that would allow me to be weak if and when I chose to be. Teach your son that CF is not a disability, CF is just a challenge that you have to overcome. As a kid I always thought that my parents were hard on me but now I am soooo thankful they were like that because they have taught me to be tough. CF is not my defining characteristic...I am a geologist by education, a Seismic Data Specialist by occupation, a wife, a homeowner, and a mother to two furry kids...but I just happen to have CF. That is what you want for your son! That's what you need to focus on... not what somebody posted on Facebook. Nobody should be ashamed of CF, CF is not some poor life decision we made that we have to live with now, it's just the cards we were dealt. The "cards" of CF is not what defines us...what does define us is how we choose to play the game of life, fold or go all in!! Good luck with your son and please don't ever let CF define who he is! Don't be embarrassed or ashamed of CF, and PLEASE don't let your son be either! Having this mentality now will only make him feel uncomfortable in social or public situations down the road.

 

[Melissa75]

I'm a fellow parent and I do not want people putting my kids on their Facebook pages for ANY reason. Social media is not benign and this is an important boundary issue, not a crime and not an issue of shame, but one of privacy and boundaries. We're all negotiating a new world where nothing is truly deletable and a digital identity should be in the control of the parents and then gradually released to the child as he/she gains maturity. Your nieces intention was lovely but this is a teachable moment for her about social media and privacy.

 

[scanboyd]

I agree with rosesixtyfive, your niece should of asked you about mentioning that your son has CF. I feel like she ment no harm but privacy is very important to certain people and your son may be one. I went through that stage (privacy) my self when I was a you boy early teenage yrs., not that i was ashamend that I had CF but did not like someone else giving out info about me. This was a aunt that I loved very much. She and I had a talk and she agreed with me. Has nothing to do about trying to hide CF or be ashamed of so let the imedate family, mom and dad as well as the CF person when they get old enogh give out personal info. Discriminaton does exists even we say it can not, so some future employer could see this and may not hire him because of his health. One should think long and hard before giving out personl information especially about somone else with the social media we have today!!

 

[AggieGeologist]

The whole point of Facebook is to share our lives with the world, correct? If you don't want people posting anything on their FB pages from your FB page, then don't have a FB page at all. Honestly, I wish more people would censor what they put on FB. But I have to ask...what's the difference between Facebook and this PUBLIC CF forum? Nothing that I know of, all it takes is an email address and BOOM, you're on a social media website, much like this one... Even though this website is designed for a special cause it is still a SOCIAL MEDIA website and as Melissa75 stated...nothing is truly deletable.

 

[SarahProcter]

We're very open about my kid's CF in our community (she's just entering Kindergarten) since we do things like go on preschool camping trips with everyone and bring her nebs and vest and everything along and do treatments at the campsite. But I wouldn't like it to be something someone could find easily by doing a Google or Facebook search on my daughter's name, since someday she may wish to apply for a job and not have the fact of her diagnosis be the one of the first things people see when they look her up online prior to meeting her for an interview. We don't do Facebook though so that helps. It is an interesting question as a parent, when your story (as a parent of a person with cystic fibrosis) stops being yours to tell to the world so much because of the desire to let your child frame their own story, complete with respect for their medical privacy.

 

[rosesixtyfive]

Wow! My family will be like Sarah. My son is in preschool and takes his enzymes. He knows to respond openly if kids ask him. So, no, it is not a secret. I want everyone in the world to know how much he struggles...but not on Facebook. And Aggie, there is a huge difference in being on this page where people are anonymous and people can come for support. She took a picture from my Facebook page and tacked on some medical information. Fine to take the picture, which was already there, but not the medical information. We pray for my son, but with close personal friends, and believe me God hears that without it being announced on a social media webpages. It's funny, just last year when I wanted to send a letter home in preschool explaining what CF was, I was criticized by CF adults who asked me why I would do that to my child? That is what made me reevaluate how I would approach it. Openness, not hiding anything, and pride in our struggles - perfect...but announcing on Facebook and other public forums - something we just wouldn't do. My little boy knows how proud I am, and he knows I am so proud of him for fighting CF....don't worry, Aggie, there is no shame involved here and he is being raised to be proud of everything he is and has to go through.

 

[azdesertrat]

I think your child has the right to absolute privacy in this matter. I couldn't tell anyone for years that I had CF because the job I did demanded a physical. I would have been physically disqualified if the whole world knew of my condition. You are absolutely right in this. Whoever posted that on FB should have asked your permission first. That is incredibly thoughtless for them to do that.

 

[rosesixtyfive]

Thanks, Pat. We want to do everything right. I know we will make mistakes, but we're trying.

 

[keefer11]

There are way too many over sharers on Facebook! I think you were right in getting upset. My boyfriend took a bunch of pictures of my brothers young kids recently and he ASKED if he could post them on Facebook before even considering posting them. And that's what people should do, respect other people and their privacy especially when it has to do with their kids. Personally, I think it was rude for her to take the photo off your page in the first place, whether it had a medical note on it or not. You don't know her 500 friends! So many people have just acquaintances on their pages and dont actually know the people, some could be creeps, who knows. Anyways, if you wanted to put his medical info on Facebook you could, but other people shouldn't feel like they are entitled to, unless you are doing a fundraiser or trying to spread awareness or she has your permission. And not because you are ashamed but because you are SMART and CAUTIOUS.

It's a tough call with how parents advertise their kids CF. my parents were the type who kept it private because they wanted me to feel normal and not have people treat me differently, not because they were ashamed. And unlike what Aggie has said, keeping it hidden did not make me feel ashamed and did not make me antisocial, it made me feel normal. All of my siblings have been successful even though we "hid" our CF growing up. BUT because they kept it private it has been harder for me as an adult to tell people about it. You just don't want people to feel bad for you or treat you differently.

I think the way you are being cautiously open about it is the best way! You guys are doing good.

Also, this is a PUBLIC CF forum but I'm pretty sure no one on this forum knows my real name, so it's still anonymous. You would have to do some real digging to figure out who I am.That said, this forum is totally different than Facebook.

 

[AmalynRose]

My husband and I are the types of people that really value our privacy. We want to be the ones in control of where our information is posted, no matter what. I am due with our first child in September. We are literally banning ALL family and friends from posting ANY pictures of our child on Facebook or any other social media site. There are just too many crazy people out there on the internet. I cannot control who sees pictures of my child when I am not the one posting it. Too many people don't have their profiles locked down and information is too easy to come by on social media. Even if I am the one who posts a photo, what if a friend shares it and then it gets shared again and again by people I don't know. It still comes back to me and then there is the issue of potentially thousands of people I don't know seeing pictures of my child and knowing my name.

CF or not, it's just not worth it to me. I'll remain anonymous, thanks.

 

[welshwitch]

Yeah, CF is private health information as far as I'm concerned. Would you want your medical records posted online for everyone to see? It's right to not be ashamed of it, but wrong to post it on a public forum. There's a reason we all have aliases on here. I wouldn't want my employer to be able to google me and come up with my private health info, no matter how open-minded they are. I want to be in control of that information.

 

[CyrilCrodius]

The whole point of Facebook is to share our lives with the world, correct? If you don't want people posting anything on their FB pages from your FB page, then don't have a FB page at all. Honestly, I wish more people would censor what they put on FB. But I have to ask...what's the difference between Facebook and this PUBLIC CF forum? Nothing that I know of, all it takes is an email address and BOOM, you're on a social media website, much like this one... Even though this website is designed for a special cause it is still a SOCIAL MEDIA website and as Melissa75 stated...nothing is truly deletable.

Are you seriously asking what the difference is between this forum and Facebook?

Wow.

 

[KateLarge]

There is definitely a balance to be struck. When our daughter was diagnosed we told the village because it was such a big deal, we were very upset and could never have hid it. We also put an announcement on FB and this has been great as we have upped awareness and lots of people have then done fundraising for CF! I only really mention her CF though when she has an annual review, I don't post about her CF day to day. It's a good balance: people know she has CF but it's just PART of the picture. It's nothing to hide but it's not what defines her or us. This approach really works for us!

 

[Iamqueenofeverything]

Ppl do have a Facebook page without sharing every single thing. Ppl need to take notice of what ppl share. If it deals with another person, one should ask before posting anything. I would be upset if someone posted something personal about me. Telling ppl about my cf is my choice. I am not hiding my cf but its up to me to tell others.

 

[Scorp]

Please wake up !

Thanks to the CFF our disease is still treated like we are leper's. You ask anyone what "Diabetes" is and they can nail it. Cancer, everyone knows what it is. Mention CF and very few people have a clue. Yet today, Drs. offices (outside of CF clinics) is very sketchy. I have asked a nurse in a prospective PCP office if she knew what CF was. Of course her reply was "OH yes" , then she proceded to ask me when I think I contracted CF. I told her the office just failed the test, and I left. My most recent encounters have been as follows. My last PCP for 4 years concentrated on liver disease, could not get them past it. My currant PCP is concentrating on an ulcer I may or may not have had 35 years ago, and has not given me any problems in as many years. I do not stand a chance of good medical treatment, it is sad. Thank heavens I have Dr'd myself all these years. Sarah the little 10 y.o. girl that needed a pair of lungs, has done more to get the name of CF out in the spot light as anyone has. FOR NOW we have to be careful about who finds out about our CF. For some reason it is kept a big secret by the CFF from most of the U.S. The only time you hear about CF is inside the CF circle.

 

[zaj1139]

My grandson has CF and its on FaceBook and anywhere else we can think of because we are very active in awareness. We have a team: Jaden's Juggernauts who walk yearly to help raise money for research. We get a lot of donations due to the fact that friends and family know Jaden and want to help find a cure in his lifetime. Personally knowing someone really helps people open the wallets and in order to find a cure there must be funding. Im sorry we never thought of letting Jaden get older an deciding for himself because of our relentless pursuit of awareness and a cure.

 

[Scorp]

Where's that cure ?

In 1959 I was told there's "a cure just around the corner". Well I have been waiting 54 years for that cure. I am darn glad I did not hold my breath waiting. I learned many years ago not to look through "rose colored glasses" it is what it is..........Scorp

 

[JustDucky]

As far as putting medical info on FB, she really should have asked if it was okay to share on her page. As others have said, it boils down to privacy...I personally don't put too much info on my own page. I do use FB as a means of updating my condition whenever I am in the hospital. Those who know me, know I have CF, but in the end it is my choice to share as much or as little about my CF on public forums. Hopefully your extended family will ultimately understand. When your son is old enough, he will call the shots as to how much and when he wants to share about his CF.

Jenn 41 wCF