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    • #11203
      Brittany Foster

      I think it’s so difficult when we as patients rely so much on our partner showing strength and we are saddened when they also express their feelings of frustration. It can be complicated when we look to them to be the “tough ones”. I am always torn because I want my boyfriend to be able to express how he’s feeling and his worries about my condition. When things don’t go as planned, he will say his frustrations out loud and say things like “I don’t want this”. He explains to me after that he just gets frustrated when he can’t just have a “normal day”. Which I get completely because I feel the same way about my condition. It just becomes hard to hear when a partner says your inner thoughts out loud. It’s always a toss up between me wanting him to express how he feels and also filtering his responses. There are certain things that just shouldn’t be said to us. But at the same time, I understand where we comes from when he’s angry and upset. He always will tell me after that he’s angry that I have to deal with this and that this is our normal. But in the moment it seems as though the anger is directed at me. It’s a lot and I do give our partners a lot of credit.

    • #11207
      Kathleen Sheffer

      I agree it’s challenging to separate ourselves from our conditions. I often feel like a burden on my family and significant other, when really, the disease is the burden we share, and not something created by me.

      It’s a fine line to walk: “I don’t want this” can sound like “I don’t want you.” That’s not the case at all, though. I think it’s important for you both to be able to express your frustrations freely, but you may need to have further conversations where you explain how his frustrations make you feel.

      PH is kind of like that sibling or friend we love to complain about, but won’t let anyone else complain about. We can say “PH sucks” over and over again, but when someone else says “Your PH sucks,” we go, “Hey, back off, that’s MY PH!” There are lots of cases where we learn to just listen to our friend complain about someone in their life without joining in. Maybe you can ask your boyfriend to do the same with your disease.

    • #11209
      Jen Cueva

      So very true, Brittany and Kathleen!
      Living with PH half of my married life ( tomorrow actually ), I am beyond thankful for my loving and supphubby but when he voices his frustrations with PH and issues associated with, I feel at times it’s me he’s frustrated with. He tells me that’s NOT it and I think he then feels bad for even voicing his frustrations. Tat makes me feel bad and he rarely voices the frustrations unless it’s continuous bad days with no good days in between.
      I think this is just another “perk” Of living with a chronic and life altering illness.

    • #11214
      Kathleen Sheffer

      Oh yes, definitely another “perk!” What doesn’t kill us makes us stronger…

      Glad you have a supportive husband who is involved in our community too!

    • #11215

      I signed up for this forum because my mother has PH. I wanted to know more about dealing with my moms PH and offer some advice about dealing with sickness. I have a husband who is ill but not with PH. I sometime say things when I get frustrated because he can’t do things we used to do together. I have to be careful and has started keeping my thoughts to myself.

    • #11225
      Jen Cueva

      @Kathleen, yes , you know all those “perks” all too well.

      @Gwen, sounds like you have a huge load to carry . First, I would say take care of yourself first and be sure you are taking time for YOU.
      I’m not sure what stage your mom is with PH, but education and having a great team of doctors as well as family and friends for support help so much. Sorry, your hubby is ill as well, you all have lots going on. They are lucky to have you and it’s normal to get frustrated at tines, caregiver burnout is common too . I’m sure we have a thread here for caregivers you can also Che k out. If you have any specific questions, please feel free to ask.

    • #11227
      Kathleen Sheffer

      Gwen, your frustration is normal and healthy. I hope you can find a way to voice it through other channels, if not to your husband. I have a therapist I see weekly and it is so nice to have a third party I can say whatever I want to without causing pain or inviting judgment. Talk to friends who love you and your family and won’t try to fix the problem. Sometimes we just need to let it out, but as you’ve read here, it can be damaging to the patient if taken personally.

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