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    • #12819
      Kathleen Sheffer
      Participant

      At PHA’s 2018 International PH Conference and Scientific Sessions, I photographed a discussion for parents of kids with PH. One mother told the group, “Make sure you tell your child PH is not their fault.” Her child had started sobbing when she told him so. I know I would have done the same at that age. Even as an adult, I had to leave the room, fighting back tears.

      It takes work for me to accept the fact that my disease is not my fault. Logically, I believe it, but I’m not sure I live my life with that in mind. I feel more that my disease is a challenge that belongs to me, which I have to endure. I struggle to accept that the disease belongs to my caregivers as well, and is not a burden I have laid upon them. I’m even more reluctant to let my disease affect people who come into my life by choice. If only they could choose to be friends with me, without my disease. My disease may not be my fault, and it may not define me. But it is decidedly a part of my life, and it becomes a part of the lives of all who care about me.

      Have you ever felt that PH is your fault, or that you are a burden to others? How much do you consider your disease a part of you, or a part of your life? Do you let PH affect your relationships?

      I’m not sure I can avoid letting my health history affect my relationships. But, I think that’s okay. My disease gave me many of the life experiences that made me who I am today. Because of PH, I am more resilient, more empathetic, and I have more clarity about what matters to me. My friends and family agree. We not only share in the burden, but share in the benefits, too.

    • #12950
      VK
      Participant

      So far only burden I’ve been is to my parents… the whole financially dependent on them until 27 due to having limited functional capacity — with no high paying job/marriage/grandkids to show in my early 30s yet. Given I’m not dependent on them now with a working class academic income, I can avoid feeling like a burden by telling them both to fly a collective kite. I recommend that fellow PHers consider what makes them feel like a burden and talk to the perpetrators… if they’re like my parents and won’t relent– Reduce or cut off contact if possible.

      • #12953
        Brittany Foster
        Keymaster

        Hi VK,
        I can totally relate to the financial burden aspect of what you’re talking about. It’s so hard to be financially dependent on anyone. If people make you feel like a burden for this, even with knowing your condition, they need to take a hard look at who they are as a person. It’s one thing for us to “feel” like a burden and it’s another thing entirely when people make us feel this way or validate our feelings!

    • #13040
      VK
      Participant

      Hi Britt – Thanks for your advice. In contrast, most people think I need to respect my parents a little more. I would, but I have to respect my own body first.

      • #13041
        Brittany Foster
        Keymaster

        VK,
        You can’t pour from an empty cup! Work on yourself first and the rest will follow! 🙂

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