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    • #29806
      Colleen Steele
      Keymaster

      Last week I had a discussion with my son about the challenge many PH patients have getting friends and family to understand just how sick they are. We talked about the “You don’t look sick” comments that can sometimes make a PH patient feel like they need to push themselves beyond what they can physically handle.

      Cullen is most bitter about the opposite problem. He often felt so frustrated when he felt like he could do something but was told he could not. Even thought he was a child he was a strong self-advocate, new his limits and opted out or rested when he needed to. So it was upsetting to him when it was decided for him what he could and could not do.

      Do adult PH patients experience this as well? Let’s discuss.

      I wrote about this in my column this week. Click here if you would like to read it.

    • #29811
      Colleen Steele
      Keymaster

      This comment is from @mamabear007:

      Oh yes! Before his surgery, my son’s former doctor told him to quit his job and go on disability. He doubled down, just to prove to everyone he could do it. I have to admit that I wished he’d follow doctor’s orders as I watched him get sicker and sicker. I kept my thoughts to myself because I knew that knowing my true feelings would crush him.
      I sometimes wonder if he had followed that first doctor’s advice, whether he would’ve switched to the PH specialist he now has (the one who correctly diagnosed him with CTEPH in time to have the PTE surgery he needed in time to save his life).”

      • #29834
        Jen Cueva
        Keymaster

        Hey @mamabear007, it sounds like your son has always been a strong advocate, too. I am grateful that he did not quit and followed what he felt he needed to do. He has now been there and advanced to the meat department manager, correct?

        It sounds like you and @colleensteele both have raised strong sons and allowing them to stand up and advocate for themselves when they could. Kudos to you both!

    • #29833
      Jen Cueva
      Keymaster

      Wow, another excellent column, @colleensteele. I love that Cullen was the opposite. As a child, it must have been horrible being told no.

      AS an adult, just this morning, I was told that I need to rest all day without working. I had a busy day with my Moma yesterday, and we had a nice lunch outdoors. I was exhausted, but I guess my family thinks that I am still in need of rest. This is when I struggle; it’s been a work in progress. I want to work more and stay busy. I do know that often it is for my best interest but telling me, no, I can’t say that this is my favorite line, either, “I just wanted people to stop telling me no,” Cullen said.”

      I just told my hubby and Moma that we could meet in the middle, lol.

      Well done, Cullen and @colleensteele.

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