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    • #14782
      VK
      Participant

      Hi all,

      Question: Does anybody else here experience anger about being ill? Especially towards parents, if your problem is clearly genetic. If so, how are you coping (or not coping) with it?

      I’m especially angry at my parents for the combination of having me and then vehemently denying the fact that I had a genetic illness that caused my PH, which shortened my lifespan greatly.

      They even had me before they were mentally or financially prepared to take care of a child (they’re immigrants who wanted a US citizen family member and having a kid born on US soil was the most convenient way). After my charity-funded VSD repair, they really didn’t care about any other problems I had and expected me to fulfill all duties of being a child (yes, in their culture, there are duties!).

      I cope with it by severely limiting contact with them. I know that might sound really cruel and hurtful to those of you who are parents. But mine still won’t admit that I have a terminal condition – to say nothing about the fact that they caused it!

      (PS – Don’t get too concerned about me, yes I do see professionals about this problem. But, they can be of limited help because they look at my educational attainment and assume I must be coping very well with everything.)

    • #14783
      Vanessa Vaile
      Participant

      VK, not only as a parent of grown children but one who left graduate school (which not getting there until late 40s) to take care of my mother the last year of her life, I do understand. Distance is better than constant friction in a situation unlikely to improve significantly since hasn’t already. Maybe later, maybe not. Besides, you know how stress affects breathing. When I started having breathing problems, I’d explain that it gives a whole new meaning to the expression “oxygen thief.”

      • #14785
        VK
        Participant

        Thanks Vanessa for the useful words! It really helps to hear from someone who is a daughter and a mother.

        I don’t have distance (the top grad program in my field is in the same city as my parents) but I did make psychological distance by not living with them and trying to not talk to them too much (because the conversation inevitably shifts towards bad things).

    • #14796
      Brittany Foster
      Keymaster

      Hi VK,
      I can understand your frustration and hurt. My condition is genetic as well and the specific gene that is effected for my family is made worse when a mother has gestational diabetes. My mom had diabetes when she was pregnant with me that seemed to alter the genetic defect so I had it “worse”. I don’t blame any of this on my mom though at all and don’t even blame that genetic mutation on her. She couldn’t control what was mutated in her genes either. I know many of us look for something or someone to blame, but it isn’t fair if I ever took this out on my parents. My mom had a hard time at first with accepting my condition and even talking about it as something serious, she came around and now is my biggest supporter and advocate. It’s easier to place blame or anger towards someone when they aren’t supportive of you and don’t listen to you. I can understand that. Know that you have our support here and I wish things were better for you and your parents. (((Big hugs to you!)))

    • #15137
      Stephannie Baker
      Participant

      I can understand your anger, probably I would do the same. Them denying is causing you more anger than them just considering the fact that, yes, they caused it. We as kids always want our parents to take care of us and if they deny seeing our condition then it does cause hurt. I guess what is done is already done now. If you cannot get along with your parents then I just ask you to visit them just to say Hi. I mean, yes they are being ignorant and maybe they can not come to terms with what they have done to you so not addressing the elephant in the room must be keeping them from not feeling guilty. Make peace with yourself and move on. It can get hard but that will stop you from getting more hurt.

      • #15145
        Brittany Foster
        Keymaster

        Hi Stephannie,
        I agree and feel like holding onto a hurt like this is a lot to keep inside. I am lucky to have family and parents that understand and even though many of my conditions are “genetic” I never would place any blame on them for “causing this”. It’s unfortunately the cards we were dealt in life and it’s sad when others can’t show support and some type of understanding.

    • #15147
      Joanne Sperando
      Participant

      Hello VK. I’m the 3rd person to be diagnosed with PH in my family. We know it’s passed down on mom’s side as her sister died of PH at 23 years old in 1963. We lost my brother in 2015 after his 20 year fight with PH and RA. I’m at the 20 year mark too. I’m furious at times, but not at my parents. Passing down the gene was not their fault, just an uncontrollable bad luck thing. In 2016, while I was recovering from open heart surgery (where I almost died), I found out that dad has passed on a gene for another rare illness called VHL and it’s caused my pancreas to be covered in cysts, exacerbating my gut issues from the PH meds. I seem to have more than my share of issues, and yes, I’m angry quite often. But I’ve been blessed with a fantastic family, supportive friends and the worlds most patient parents. I try to live each day like my last and not dwell on my sadness. I was unable to have children and that still bothers me some days, but I know my health suffers if I keep emphasizing the bad parts. I think a lot of parents are unable or unwilling to really accept our illness because it goes against the natural order of things. I’m so sorry your parents are causing you grief and not being supportive of you and your struggle. But what can you do? You can’t change them, so I’d say, stop trying. Focus on you, focus on who you love and what’s important to you. We can all shout at rain and it feels good to do that sometimes, but in the end, it accomplishes nothing, except some good venting of course! You’re not alone in this fight–there’s so many of us here with you.

      • #15153
        Brittany Foster
        Keymaster

        Joanne,
        It’s so great to see the encouragement that you give to others. You are so right and it’s a lesson that I’ve had to learn the hard way through various things in my life that we simple can’t change people no matter how hard we try. The only thing we can change is our attitude towards it and how we change the things in our life so either we don’t deal with it anymore or learn to put the ignorance aside knowing the source its coming from. Thank you for such encouraging words and for being a part of the forum. I’m sorry to hear that family members have passed away from this in your family. It must be scary to have lived with it for 20 years but you definitely have a positive outlook and I’m sure you are making the most of this life.

    • #15167
      VK
      Participant

      Hi all!

      Sorry I didn’t check on this thread for a while but your support has truly been amazing.

      I won’t go too far into this because this isn’t a PTSD forum, but as you can tell, I think one root of the problem is that my family is extraordinary, and not in the good sense. I am realizing that this is more a problem of having to deal people who don’t understand disability.


      @brittany-foster
      said —
      I know many of us look for something or someone to blame, but it isn’t fair if I ever took this out on my parents. My mom had a hard time at first with accepting my condition and even talking about it as something serious, she came around and now is my biggest supporter and advocate.

      I’m genuinely happy for you! ^_^ In my case it was half the doctors’ fault for saying my life would be normal after heart defect repair and my parents bought into it which made my childhood a nice load of heartbreak. My official PH diagnosis was less than 10 years ago, past the age of 20 already.


      @stephbaker
      said —
      I mean, yes they are being ignorant and maybe they can not come to terms with what they have done to you so not addressing the elephant in the room must be keeping them from not feeling guilty.

      Good point! Honesty is the best policy. I did address the elephant within a month of being diagnosed with PH (about 10 years ago), but I think mine just don’t get it. They are deeply in denial and maybe just starting to come out if I’m lucky. :-\

      @joanne-sperando-schmidt said —
      I think a lot of parents are unable or unwilling to really accept our illness because it goes against the natural order of things. I’m so sorry your parents are causing you grief and not being supportive of you and your struggle. But what can you do? You can’t change them, so I’d say, stop trying.

      It took me close to 35 years but I’m on my way. Right now I am sort of in an induction phase (so far 6 months) of just not seeing or talking to them – this is to help them become emotionally independent of me and stop demanding things. Including grandkids – Natural ones. *facepalm*

      • #15183
        Brittany Foster
        Keymaster

        VK,
        I’m so sorry you are feeling the effects of PTSD. I know that all of this is so hard to deal with on its own, nevermind having to deal with family drama on top of it. Please know that you always have a safe space here to vent and talk about what you need to and as you can see from many of the threads on here, people genuinely want to support each other. Thinking of you!

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