This topic contains 6 replies, has 3 voices, and was last updated by  Brittany Foster 8 months, 2 weeks ago.

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  • #15168
     Kathleen Sheffer 
    Participant

    How many of our forums members have siblings?

    Chronic illness affects all family relationships, including sibling relationships. In my opinion it can have a greater impact on such relationships than it does on parent-child relationships or partnerships. Whether it’s parents caring for their child, children caring for their ill parent, or one partner caring for their significant other, established caregiving models exist. For siblings, the caregiving role comes less naturally.

    With a younger sister who has grown up with me being chronically ill, it’s been especially challenging to find a balance between having a “normal” sibling dynamic, and addressing the reality of our family life. Earlier this year I described in a column post some of our experiences navigating our sisterhood the past 19 years since my diagnosis. As the older sister I expect to be more of a caregiver to my younger sister, but that can’t always be the case. Often I have relied on my sister for my basic needs.

    My sister loves me and cares for me even in times of paralyzing anxiety or steroid mania. It’s not easy, and comes at a cost to both of us. We have spent many hours in tears talking through such traumas. These challenges have made our bond stronger, but I wish we didn’t have to work through them.

    How has your relationship with your sibling(s) been affected by PH? What is your age difference and birth order? How do you talk to your sibling(s) about PH? How much do they know about it?

    Feel free to join our discussion even if you are an only child. Perhaps there is a friend in your life who is like a sibling to you. Maybe you have challenges with other caregivers in your life. I’d love to read about them so we can learn and grow together.

    My Sister: Fierce Competitor and Battle Buddy

     

  • #15187
     Brittany Foster 
    Keymaster

    Kathleen ,
    This is an awesome topic. I am the oldest of 3 girls and have 2 younger sisters. One is currently 22 and the other is 26 (we are only 17 months apart). Since I had congenital heart disease when I was younger, they grew up with the “Britt’s in the hospital” being part of our “normal” life. When I got older though and they started realizing what was going on, having them worried about me really started to bother me. There were times in the beginning of my diagnosis and before my bypass surgery that I was passing out a lot and they would have to call 9-1-1. I remember them being so sad and upset and this really stuck with me. Their fear was something that I couldn’t control and I felt bad because I felt like I was causing it for them (it almost made me feel guilty that they were upset). Sometimes they try to make things seem like not a big deal and I think this is their way of coping. My sisters are better at understanding the fact that sometimes I have to cancel plans last minute or that I have to leave somewhere earlier when we all go out. Something that has been difficult is working through the “attention” I get from my mom when she has to go with me and stay at the hospitals or when a lot of her time is taken up by driving me back and forth to appointments. Sometimes, even at their age, they seem to struggle with the fact that my mom isn’t there to do things like go to the grocery store or go shopping with them when I’m in the hospital. My thoughts are jumbled probably explaining this lol but I’m sure you know what I mean. It really helped when they started going to appointments with me and heard firsthand about my conditions vs just hearing it from me and my mom. My sisters mean the world to me 🙂

    • #15195
       Kathleen Sheffer 
      Participant

      Oh yes I get it! I knew we have similar situations as older sisters close in age to our younger sisters. My sister has always struggled with the inequity of time my parents spend with us. I argue, of course, that the time my parents spend with me in the hospital isn’t exactly a fun time or something I want. I think she feels less abandoned now that she is more involved in my care and comes to the hospital with us (not just juggled between family friends). Maturing and aging helps, but we still have some jealousy to work through from our past, on both sides. That’s the nature of sisters, though. I was always jealous of all the things she got to do (play soccer, go to pool parties, etc), and she was jealous that my parents carried me and not her when we were younger, that I got to go to heart camp in Hawaii, and so on. Such a tough job for our parents to make it “fair!” All we can do is have empathy for each other and understand that life is not fair.

      • #15209
         Brittany Foster 
        Keymaster

        I agree Kathleen,
        Empathy from both sides is so important. I completely get where they are both coming from. I also would never wish what I go through on them and I know deep down they realize how difficult it is. My sisters are both my younger sisters but they can be very protective of me! It’s great to have that relationship with them.

  • #15198
     Russene Yount 
    Participant

    I am the eldest sister of two brothers; I can’t say they know much about PH at all. We’re all in our 50’s. I was dx going on seven years ago. I feel virtually no support from them, and I haven’t really asked for it. I just kinda accept that they don’t get it. I’m a bit sad about that, however I can’t say talking about it or to them would change anything…communication has not been a family trait.

    • #15199
       Kathleen Sheffer 
      Participant

      Russene, I’m sorry you’re sad about this. I can see where your siblings’ relationship to PH would be different learning about it later in life when they don’t live with you. I’m just assuming here that your situation is different from mine, growing up with my sister in the same house and later at the same college.

      Maybe you can make the first step in leading family communication and express to your brothers that you would like them to take a more active role in understanding your condition. Can’t hurt to ask, right?

    • #15210
       Brittany Foster 
      Keymaster

      I would also suggest if they live close to you maybe having one of them go to an appointment with you might be helpful. Having family members hear about your condition from a doctor can be very eye opening.

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