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    • #30073
      Colleen Steele

      Including PH News I have belonged to several on-line support groups since my son’s diagnosis in 2008. I’ve always learned and gained something from hearing about the PH ups and downs that other’s have experienced but in the beginning I didn’t always share what I was going through to the extent that I would have liked.

      In my recent column, “How I Have Dealt With PH Mind Games” I explained that, “I was afraid that my son’s good days might upset others who were going through bad ones, or that his decline would discourage caregivers and patients who were holding on to hope.”

      But what I eventually came to realize is, “My participation has taught me I benefit most when I share all aspects of my experience. Being open about the good and the bad offers much-needed balance. Advocacy and emotional stability require sharing both sides of the story. There is little value in a picture half-painted.”

      So what aren’t you telling us? Do you hold back from sharing because you are concerned how others in the group will absorb what you are saying? Give us some examples and we will be honest and tell you whether we wanted to know or not. Go ahead and test the waters!

    • #30163
      Jen Cueva

      Hi @colleensteele, for some reason, I feel like I commented on this last week. But I do not see it, LOL.

      I do know that Friday, my laptop was slow while in the forums. I think after reading a few others had issues posting that the system may be thought it was the 13th, not the 14th. Hehe

      I often will hold back from others at times. I often struggle with distancing myself when I feel my worst. I am working on that. But on the other end of the sectrum, if I am having, many good days and others are not, I feel guilty for sharing.

      But as you mention, when we are upfront and sharing the full story, we help others the most. I had a feel-good day on Friday, so we took advantage of it and got out and adventure a bit. I am about to share that in Weekly Wins.

      Another thought-provoking but interesting topic.

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