Thursday, January 20, 2011

Why can't we all just get along?

My dear CF friends, my second family, please tell me... WHAT IS WITH ALL THE DRAMA?!?

I've recently witnessed some incredibly hostile interactions between members of our community and honestly, it breaks my heart. I'm blown away by how quickly a thread that began with a simple question can be reduced to a bitter altercation between contributors. Disagreements happen, and as human beings we are all entitled to our own opinion, but harsh words and personal attacks are NOT the way to resolve those disagreements.

Although I've never been the target of one of these attacks, things have been said to me that were hurtful or, at the very least, distasteful. For instance, several months ago I noticed a thread on a CF forum (that will remain nameless) about some issues a mother was having with her CF baby. Being a mother myself, and also having dealt with CF for 23 years, I thought I had some advice that might be helpful, but when I left a response I was told (in no uncertain terms) that my opinion was not wanted.

I was shocked that they were so quick to dismiss what I had to say. I was hurt by their rudeness and felt as if one comment in particular was undermining my mothering abilities. Apparently since I do not have a child with CF, I couldn't possibly know what these mothers were going through, therefore my opinion was worthless... even offensive to some. These women almost made me feel like the enemy because I wasn't part of their CF Mommy Club.

[Note: PLEASE understand that I realize this figurative CF Parent Club is one that nobody wants to be part of. In fact, it's a shame that it even exists in the first place! The parents of children with CF are seriously some of my greatest heroes. I could not do what you guys do, and I admire each and every one of you. I simply mean to say that these women were making me feel that since I wasn't walking in their same shoes, I was not welcome to be a part of their conversation. They made me feel less than them because I am different from them.]

On another occasion (and another website), after my tendon injury, I shared my concerns about not being able to continue my regular exercise routine. For several months before my injury, walking had been my main form of exercise. I'd begun my routine during a hospital stay -- the most difficult and terrifying hospital stay of my life so far -- and gradually increased my pace and distance as I got feeling better. In five months my FEV1 climbed from 27% to 80% and I believe my workout routine had a lot to do with that. Obviously a severed achilles tendon and the estimated three months of immobility it would cause was going to put a damper on that routine.

Without taking the time to ask any more questions or get any background whatsoever, someone sent me a personal message saying that I was pathetic, essentially. He said that I was not doing enough for my health and that "simply walking" was never going to get me anywhere. He told me I needed to stop making excuses for myself and start trying harder because when I'm on lying my death bed, I'm really going to regret my "less than significant efforts".

I began angrily typing a response to his message; I told him that just a few months before that I was on 6 liters of oxygen, unable to even wash my hair on my own because I was so weak and sick that the effort it took to raise my arms nearly made me pass out. To go from that to 80% lung capacity in such a short amount of time, due to my GREAT effort was NOT, in my opinion, a less than significant approach to my health. I may have said more, and due to my anger at the time, I'm sure my speech was a bit more colorful. In fact, I'm fairly certain I used the words "douche bag" more than once. The point is that I reacted to what he had said before taking the time to actually think about it. When I finally did take a second to consider it, I realized that he most likely didn't intend to hurt me. In fact, for all I knew, maybe he was really sick himself and had recently experienced a moment of darn, I wish I had done more for myself. Maybe he wanted to save me from sharing his fate. Maybe his words were simply meant to motivate me.

I deleted my reply. After thinking about the situation, I was glad I didn't send it. I began imagining this innocent stranger opening the message, reading my overreaction and thinking, "Wow, now that's what I call a douche bag."

I think that so often that is what happens, not just in this online community, but in life. We get so riled up about something someone has said, blow it completely out of context and react negatively. How often could things be resolved if we'd simply take a step back and assess the situation before flying off the handle? How often could our feelings (and often our dignity) be spared?

Friends, we are all fighting the SAME fight! Whether you have CF, or are the parent, friend, spouse or sibling of someone with CF -- it doesn't matter. We each have something to offer, and more importantly something to learn from one another. Our differing thoughts and individual experiences are crucial in learning about this disease. We need to be able to share with each other without the fear of being judged or attacked. Our opinions are just that - ours. They are wonderful to have, and thank goodness we each have our own! But, no matter how strong or well-informed those opinions are, there are ways to express them in a respectful and courteous way.

Unfortunately, not everyone can do that. Some people will always lack tact and will never be able to word things in an appropriate way. I'm learning that even when I become offended by what someone says, their intention, more often than not, is still good. Often I just need to check my own thoughts and emotions before reacting. The funny thing about people is that when you give them the benefit of the doubt, they generally don't disappoint.

Sorry if I'm rambling. I just really needed to get this out there. I'm not asking for world peace or anything, I just think that especially in a community that is so dependent on the support of others, we need to be careful about what we say and how we say it. Okay, now that I've said everything I wanted to, I think I'll step down off of my soapbox now.

Oh yeah, just one more thing: I really do want world peace.


  1. So I try to stay out of a lot, but I have one hot-button issue that is difficult for me to not respond to. It's when people assert that their way to the only way. Their plan or emotional response to this disease is the only one that will work. That's when I get on my soapbox...and then later regret it feeling like it wasn't even worth it. Darn my impulsivness... I am learning just not to read the posts/blogs of people who appear to be this way...

  2. Totally agree...people generally try to be helpful even if their efforts are less than tactful. I always try to give others the benefit of the doubt--like I would want given to me. We all need to remember to take a deep breath (or a shallow one with zest) and think before we speak. We will never regret kind words. :)

  3. AMEN!! I agree 110%. You said it best!

  4. Yea, people get weird with this. Every time I read something that seems 'off' or 'just not right', I remind myself that there are a lot of strange people out there! I think the on-line CF connection is great but I'm beginning to get overwhelmed by it all.

    I personally love hearing from people who actually have the disease. Often they seem a bit more realistic about it than us mothers. So keep up the good work and many prayers for your health..

  5. AMEN!

    I read your blog from time to time and never respond.

    I will just say we have a freind that their children are in perfect health and they do NOT get any of it.

    Where we live we must fight with insurance all the time. At times meds are removed from the list and at times new ones are added. Tonight I was called a "lier" as this passed year some of my daughters meds have been removed from the list and are no longer covered. And last year they where.

    I have no idea how I have any control over this.

    I so wish some people could be more understand, of how costly having a sick child is as well.

    Sorry for my ramble as well.


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