Where are all the people with CF on this forum when you need support?!

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believingjesus

Banned
Where are all the people experiencing CF on this forum when you need support?!

I have a gripe. I do not understand. I have read for many years on this forum where people have stated that either they are in despair and in need of encouragement or support or they are the parent/sibling, etc. of someone they love that has CF, and all its complications that come with it that they would not have if they did not have CF in the first place, and they state on here that they need help, are in despair, or really need others that simply have experienced the effects of CF, period, and nobody or barely anyone responds?!!!!!!!!

I see people on here daily, and I mean regulars who are on here daily and they do not support these people. If you have a question regarding normal stuff in the daily life of CF they are more than happy to lend their words of advice or their experiences. If you are in despair or in real need, however, these people disappear most of the time. Not all the time, but most. I see how many views a person gets and they get one response? Really?!!!!!!

I'm not trying to make enemies but the facts are the facts. I have seen it on this forum for years. I hope in this year of 2015 we can all do better to support others with CF or their families even if you yourself or someone you love are not experiencing a transplant or experiencing a rapid decline of health or experiencing sputum cultures coming back with horrible results, etc. We are all human and we should all be there for each other.

And, by the way, I am not talking about my own posts. I'm talking about others. I have seen some people supported but I have seen so many not supported.
 
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jshet

New member
Not sure how to answer your post, but am sorry if you have ever felt like you have not received support, or anyone else for that matter has not felt supported. I think most of us try to be supportive of each other, but i think it could be something we could all improve on in our daily lives. thanks for sharing your feelings.
 
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triples15

Super Moderator
Hi believinginjesus,

I second what jshet said. Not entirely sure how to respond, but I am also sorry that you or anyone else have felt unsupported.

I have not noticed the pattern you are speaking of with many people posting in despair, and getting few or no responses. I will pay more attention now that you have mentioned it. One thing you have to remember is that MANY of those views are non-members or members that just lurk, but don't post. A great many posts have HUGE "viewed" counts and few to no responses.

I can't tell you why others may not be responding, but I can tell you that I am only able to be on here for a short time each day. In that time I try to read all the days posts. I have to pick and choose which, if any on that particular day, I have time to respond to. I normally respond to the posts where I feel like I have the most to add, such as something very pertinent and/or potentially helpful to contribute. Some days I have time to respond to more and I may welcome new members, or just give a few words of support even if I have no experience with what they are dealing with or advice for what they asking.

It also seems to me like many times the people who are the most nervous and desperate are the new parents. Often they are specifically seeking support from other parents of CFers. As an adult with CF, they are often not looking for support from me. I do sometimes, however, chime in on those as well just to say, "hey, I'm 34, a college graduate, married with a 3 year old daughter" to help give them hope.

Thanks though for bringing this up. In the future I will try to carve out more time just to offer a few words of support/encouragement when I see a message such as the ones you are speaking of! :)

Take Care,

Autumn 34 w/CF
 
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believingjesus

Banned
Triples15 and Jshet: Yes I understand all that you have said. I know that many are not members and are just viewing. I have noticed that many ARE members and I have viewed that they were online and I am pretty sure that they have viewed some posts and have not given support. I am not their judge though and I did not mean to judge them. Maybe they were very busy that day with all the things one has to do with daily life plus CF.?

I understand that parents are upset when they find out their child has CF. I was there and was devastated too. I totally understand that. The fun never ends though as there are many upsets that keep coming ones way and even though people have grown up with CF, they still need support. When people find out something at the doctor that gets them depressed or upset or finds out news of rejections for a transplant or has a decline in health and are reaching out to others I would think the forum would be filled with words of encouragement and support. I work at home full-time and am able to look on here more than others though too. I let my temper get the best of me and then I always mouth off. Maybe I should have just let it go.
 
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jshet

New member
Sometimes it's just good to vent, and I can relate to the temper thing, lol. We all feel frustrated from time to time with what either we or our children are going through. Some days it just gets the better of us. We vent, we move on. Hope you are feeling better with this. Take care.
 
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jamest

Guest
I wouldn't rely on any portion of the internet for moral support - even here. CF people are good at being sick and handling their own lives - but they have no idea what to do when someone else is sick.

I have a talk therapist I've been seeing for years, that doctor is as important to my mental health as my CF team is to my lungs. And psychotherapy is cheaper than ever now that Obamacare has reduced costs/increased coverage for mental health stuff. If you are serious about needing support and want someone to talk to, hire a professional, it will make a huge difference!
 
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believingjesus

Banned
Jamest: so true! I know that only having moral support from others online is not good but when people with CF can not be around others with CF who share identical experiences - it is so hard. I have felt many times the need to talk to someone to help deal with all that CF gives but I also don't know of anyone who does that for a job that would be able to truly relate. I do find strength in trusting in Jesus, hence my sign-in name. I wish I could take it all away from my son and that he did not have CF. I'm sure all the parents out there feel the same way. Thanks for your reply.

Also thanks Jshet for understanding. You made me laugh. :eek:
 
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TreasureGoddess

Member
I have to admit I don't usually even go read the posts where someone is truly in despair. Maybe it's selfish of me, but I just can't handle it. I usually zip in and read a few quickly while on a break from work. My own situation is sometimes to the point where I'm close to tears many times. If I get in and start trying to respond to how to deal with such despair, worry and such, it just reinforces my own feelings and makes me cry, not something to be done all the time at work. Heck, my eyes are tearing up just typing this!!! I try to read & respond to those questions where I know I can help. I jump in on the belly aches, sinus issues, or coughing aids, school issues etc as that is where my strengths are and where I've lived and learned and want to help others. If I see a post that hasn't had someone reply, I try to add something encouraging where I can. I don't even open or read those of new moms and/or expecting moms worried about their infants. Maybe that's horrible, I don't know. While my son is living a great life, he's also missing out on a lot of things and as a mother watching her child hurt and going in for multiple hospital stays, it's hard. I don't have good words of advice to say to those moms, and I'm sure someone else can say it better, so I focus on my strengths and where I can be of encouragement and help.

Maybe other readers are like me. We all give what we can. I've received amazing help and support when I've needed it here on the boards. I try to pay it forward where I can and when I can.

I think we can all try to help a bit more in the new year and to be observant when someone is in crisis. I have often seen people recommend finding a therapist, working with the CF team and/or social workers, psychologists, etc and I will try to add this to those posts when I see them as well.
 
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windex125

Guest
I am sorry you feel this way abt this site, but I as well only post if I feel I can be of help and also give the right information to someone. I do not post to New mothers or anything regarding infants. It's different now in all aspects or treating as mentioned many times before I just turned 60. How I got treated in the 50's was so different. plus I just added a post on one of the threads mentioning that my case was not treated for so many years. I will always offer the words of comfort as I did to a family that was recently losing their daughters boyfriend who was in the end stages... It's good to vent as well but I feel you were a little hard on us as a whole group .Sometimes we are truly at a loss for words. Don't take it personal, I think this is the time you shd sit and have that special pray to calm yourself. Pat
 
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believingjesus

Banned
I am sorry to anyone I offended. I did let my temper get the best of me and I am not always right, just ask my husband. I should have let it go. I am not perfect either and I do appreciate any prayers for my son at any time. I will try to be there for others too but I have failed at that too. I apologize. I typed it out in anger and hit send. I try not to judge but sometimes I still do. I do hope if any good comes of it that people will be more attentive to the needs of others, especially people with CF who are experiencing health declines and adult CF worries too. Yes I know that I should have kept it to myself.
 
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believingjesus

Banned
Aw! I am so sorry!!! I can't imagine. I am sure you need much more comfort and support than I do and most people on here. I was just upset because I saw that nobody responded to a post from someone on here that I know has to be going through a hard time. I have seen it happen before as well as to myself when I thought somebody could respond but I also shouldn't have mouthed off and kept it to myself. I teach children daily to use their words and I guess I taught myself that too but not in a good way. I get mouthy when I get upset.

Amazing that you are going through so much right now and you still invite people and say that you are there for them! I am so sorry to you for your loss. Please know we are all here for you if you want to talk about it and hopefully someone can give you words of comfort. Please give any advice you have too as I'm sure you have been through it all. I am so very sorry to you. Please feel free to private message me at any time. Thank you so much for inviting me and everyone else to get ahold of you. So very sweet!
 
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Melissa75

Administrator
Cbphone, I am so sorry for your loss, you have my heartfelt condolences.

Believingjesus, I'm glad you reminded me that compassion and support are important.
 
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ladybird

New member
Just wanted to thank Autumn aka triple15 for the amazing support that she offers to all in despair. I am always amazed to see her compassion - Autumn is usually the first to respond to those seeking upliftment. Let's all try to be more like Autumn. And thanks believingjesus. Compassion is something we all need second helpings of.
 
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Tnjackson2

New member
All your replies have been helpful to read. Believingjesus, I understand about rants and also tend to get mouthy when upset, sad or angry. Most times anger comes out when I'm sad or feel helpless, which is so often these days. I am new to this, I can't imagine yet everything so many of yall have gone through - adults with CF and parents of children older than mine, this is a strong group of people. I've just barely got on this stupid damn crazy train and already everyday my emotions are just ridiculous. I see too when posts or questions go unanswered but have many viewings. I'm guilty of that. I think it's so many reasons why nobody replies sometimes, but it is true I think that we can't take it personally. I like your reminder that 2015 can be a year of trying to be more compassionate, less absorbed in ourselves or situations, everyone is struggling with something. Again I appreciate all the replies on this, and to all of you who open up and share knowledge about your situations because it really does help!!!
 
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Printer

Active member
Would someone help me out here.

Exactly is "support"?. Is it always telling a CF parent that they are correct? Are CF parents ever wrong and if they are do we "support what it is that they are doing? Is it giving the best advice available, based on life experience? Is it OK to tell someone that they are wrong or is that not giving support? I have been told to stop telling people to go to there nearest CF Center because "everyone knows that".

Just asking.

Bill
 
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Tnjackson2

New member
Bill, I don't think just telling somebody what they want to hear is too helpful. I want to know of any and all info that anyone is willing to share that could help me or enlighten me or my kids. If I don't agree, or choose a different option well that's on me. I don't know your situation re: the nearest cf center, but before my son was dx'd, I had no real clue about cf or what a "cf center" was.
 
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believingjesus

Banned
Printer: Just out of curiosity, in your opinion, what did I do wrong as a CF parent? Maybe you are right but I don't know what I did so I don't know if you are or not.
 
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Melissa75

Administrator
believingjesus said:
Printer: You can private message me if you want. I ask you because I know you will tell me your view even if it makes me mad. I value everyones advice, not just yours, but I want to know yours because you will say it no matter how I am going to take it.
Click to expand...

I think Printer spoke up in this thread because you mentioned the distinction between people offering information and people offering emotional support, but I don't think he was aiming anything at you.

As for the distinction between the two types of help (information vs. compassion), it's a fuzzy line. People have different ways of expressing themselves, and different areas that they think they can add value/be helpful. Sensitivity in written communication is challenging for all of us, always a work in progress, and definitely important.
 
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Aboveallislove

Super Moderator
Oh mom. You did not fail your son! You raised a happy "wonderful" son, as you yourself see, and you taught him of Jesus. Jesus' weeped when He lost his friend Lazarus, even knowing He would raise him and how wonderful heaven was, so your pain and anxiety for the future is real. It is excruciating. It will pierce our hearts like a sword, as the holy man told Mary when Jesus was presented at the Temple. But you did not cause it. God blessed you with your son, just as he is, and He knew what he was doing. He gave your son a loving mom of faith and raised a loving son of faith. That is not a failure. You will be in our prayers, especially today.
 
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