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    • #29990
      Jen Cueva

        I have found that on many occasions, I am being told what I feel like. For example, after this brief hospital visit, I had family members tell me that they had difficult times going to the doctor, like being at the hospital.

        If this were in person, my jaw probably would have dropped to the floor. Really, being hospitalized is far from going to see a PCP for a check-up.

        Another family member went on to tell me how MY PH meds make me feel. Hello, they have never had any PH medications to take, so how can they possibly tell me how I feel? This frustrates me.

        Do you find this happens with you? If others tell you how you are feeling, what do you comment back? Do you ignore them and change the subject? That is what I did.

      • #30003

          Jen, I don’t remember how many times people have said that to me. But I often hear words like “it’s all from nerves” or “you’re just taking it too close”. If I follow their logic, I get shortness of breath or dizzy from being nervous (even if I wasn’t). It’s easier for people to blurt out that I’m overexcited than to imagine the fused arteries inside my body. They perceive our problems as an annoying fly sometimes. Maybe it’s easier for their psyche?
          Of course, I get annoyed. I’ve tried to object before. Now I realized that people don’t hear what others are saying to them. I let them think what they want, and I do what I need to do. If they try to tell me that I’m just imagining things, I try not to listen to their nonsense. You act the same way, don’t you? That’s all we can do.

          • #30010
            Jen Cueva

              Hi @valeriekv, thanks for sharing. Although, I hate that you, too, get this from others. Of course, I have found that it is not worth my time or energy to explain myself further. I let it go in one ear and out the other- most days.

              Now, one recent exception, I was told to eat and drink when at the hospital. I replied it is much more complicated than that. That is all and changed the subject. Sadly, my hubby is not quiet if he hears about these remarks hehe.

              , yes, like me, you hold it in. Unlike Manny, he lets them have it and cares less who they are. I do wish that I could find a balance between my responses and his, LOL.

          • #30006
            Colleen Steele

              @jenc and @valeriekv comments like the ones you both mentioned can make my blood boil. I’ve heard other PH patients and caregivers say they use these moments as an opportunity to educate. But if it is family saying those things than my thought is that they should know better.

              Jen, I would also have the tendency to change the subject or walk away. But I do remember certain comments that still haunt me and wish I had said something. Having a family member assume they know how PH meds make you feel is annoying and rather inexcusable. I’m sorry you have had to deal with such inconsiderate comments.

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