Has PH Strengthened Or Weakened Your Relationship With Your Siblings?

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    • #28470
      Colleen Steele
      Keymaster

      I’m asking both PH patients and their siblings how your relationship has been affected by PH. In this week’s column I interviewed and wrote about my sons friendship now. They have a strong bond but growing up with PH was hard on their relationship at times. I am grateful that they are close now because I know it could have easily gone the other way.

      Whether you were diagnosed as a child or an adult, how are you and your sibling(s) doing? Has PH brought you closer or pushed you apart? Let’s discuss this.

      PH and Transplant Strengthened a Brotherly Bond

    • #28478
      V.R. Peterson
      Participant

      My son with CTEPH has an older brother and sister. His illness has strengthened the bond between him and his siblings. His brother and sister both live out of state, yet when he got married, they both traveled across the country to our home state to be there for him (even though their schedules rarely allow for such travel). Even though they don’t see him in person very often, they often make lots of phone calls. Before he was diagnosed, his brother and sister rarely bothered, as they were both too “busy” with their own lives for such things. I do have to admit that it’s nice watching my children grow closer together, though I don’t like the reason for it.

      • #28491
        Jen Cueva
        Keymaster

        Hi @mamabear007, I am grateful that your kids have bonded and became closer. Like you mention, I do not like the reason behind this. When you describe your kids before CTEPH, that “too busy” is what I get from my sisters. However, they both were laid off months ago, still “busy”, even too busy to call when I came home from the hospital. Still, neither have called, that hurts, but I have decided right now to disconnect with them because I need my little energy to focus on myself and healing. Thank God for my therapist, lol.

        Merry Christmas to you and your family, Mamambear!Hugs from Texas <3

        • #28495
          V.R. Peterson
          Participant

          Merry Christmas, @jenc.

          I’m so sorry your sisters have distanced themselves from you. I wonder if it might help if you told your mother (hoping she would rely to your sisters) that there’s no wrong or right way to feel. They could call and verbally hug you. Or listen. It sounds to me, if they’re afraid to let your PH into their lives, that they haven’t learned to feel anything about life in general. That truly is sad for them. Please know that you’ve got much extended family in these forums. {{{{{GREAT BIG BEAR HUGS}}}}}

        • #28499
          Jen Cueva
          Keymaster

          Thanks so much for your kind and thoughtful words, @mamabear007. I can certainly understand that they may have different emotions related to my PH. But after almost 16 years, you would think they could grasp it better. As you said, it is too sad and their loss.

          I am forever grateful for my other family here within the forums and around the world. I know that I felt love while I was in the hospital.

          Happy New Year to you, stay safe, sending you big hugs from Texas.

    • #28490
      Jen Cueva
      Keymaster

      I love this column and post in many ways. It melts my heart as I know how much Aidan cares for Cullen. <3

      I am the middle of 3 girls. We moved to Texas to be near them. Sadly, this didn't turn out how I had hoped. We rarely talk, and one lives about 15 mins. away, the other about 45 mins. When I interviewed my Moma a few columns back, she said, " Although they do not fully understand PH, they know how it affects you daily. But your sisters have a tough time knowing how or what to feel. I know they love you but are afraid to let your PH into their lives.".

      I cannot seem to grasp this, mainly because I have had PH for almost 16 years. I often wonder if they think Moma worries more about me. But honestly, I am the one who calls her the most and tries to help her. So, my answer is that PH has weakened my sibling relationships as well as many friends.

    • #28519
      Colleen Steele
      Keymaster

      @mamabear007 since my boys were so young when PH entered their lives it’s hard to tell what their relationship would have been like if Cullen was never diagnosed. I think if anything, the dry sense of humor they both share might have kept them connected. I do think PH and transplant has bonded them in a way that other siblings might not experience. Only they understand what the other has been through…kind of thinking.


      @jenc
      I am so sorry to hear about how your sisters are treating you. This breaks my heart. Maybe they are taking it for granted that you are a long-term survivor. You would think the seriousness of your most recent hospital stay would have reminded them of how fragile your health is. I agree with @mamabear007, maybe a heart to heart with your mom would help. But I also think that distancing yourself from it so you can focus on recovery is wise too, as long as you can really let go of it. Letting the hurt sit inside of you isn’t healthy so talk to someone about it, like us or your mom, whenever you need to.

      • #28528
        Jen Cueva
        Keymaster

        Thanks, @colleensteele. I have talked to my mom about this, and of course, she shouldn’t be in the middle as we are all adults. I do talk to my therapist about these issues. I am working on setting boundaries, so they do not disrespect me. I am learning to be OK with this, depending on the day. Big hugs to you-

        Since you are an only child, do you like when your boys come to you with an issue with the other? What is your advice for them? @mamabear007, feel free to add any thoughts you have.

        • #28530
          V.R. Peterson
          Participant

          @jenc, even if you don’t want to put your mom “in the middle,” I suspect she might not see it that way. My youngest (the one with CTEPH) rarely discusses his siblings with me, but the other two talk to me about each other, the good the bad and the ugly. Sometimes I can offer advice to them, but more often that not, I find that listening to them hash it out helps them come to their own solution.

    • #28531
      Jen Cueva
      Keymaster

      Thanks for your advice and for sharing some of your experiences. I talk to my mom the most; the others are “too busy” for her, too, most times. She knows of the ongoing struggle. I had a long chat with her not long after I got home. I think it was day 4, and I had yet to hear anything from them. It hurt, but I think it also helped me create the boundaries that I have been struggling to do.

      I don’t ask about them much unless she mentions them.

      As a mom, I know this hurts her too; this is why I stuck it out so long to make her happy. Sadly, I don’t have any extra energy right now. Recovering is my top priority.

      I can understand letting your boys “hash” out. My hubby is one of 3 boys, they got the boxing gloves on and went at it in the garage, lol.

    • #28541
      Colleen Steele
      Keymaster

      @jenc when they were younger it was more along the lines of tattling on the other, but as they got older I noticed it shifting to more about concern for the other. If they try to help each other by suggesting something and feel like they weren’t heard, then they come to me and express their concern. This doesn’t happen often though. As adults they seem to work things out privately. I’m ok with that because I think it helps bring them that much closer. For example, I know they had a conversation about Aidan wanting to donate his kidney to Cullen if he ever needs one. I don’t know what was said but I could tell it was an emotional conversation for both.

      I appreciate what @mamabear007 said about the value in just listening to them. When they do talk about the other it is often while I’m driving. I do a lot of listening and that alone seems to help.

      Thank you @jenc and @mamabear007 for responding to this post.

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