Pulmonary Hypertension News Forums Forums PH Care and Treatment Diagnosis Information and ​General​ ​Questions Do you find certain words you don’t include when discussing PH?

  • Do you find certain words you don’t include when discussing PH?

    Posted by jen-cueva on April 24, 2023 at 12:59 pm

    How does the language we use influence our understanding of PH?

    When discussing PH, it’s essential to know the language used. Using specific terms can positively and negatively affect our understanding of PH. 

    For example, words like “condition,” “illness,” or “​​worsening” can evoke negative connotations and make PH seem too overwhelming.

    On the other hand, terms like “management,” “control,” or “hopeful” can be empowering and make us feel more in control of our health. 

    Choosing words carefully ensures that PH is discussed accurately without feeling overwhelmed.

    Do you find certain words you don’t include when talking about PH? 

     

    jen-cueva replied 1 year, 1 month ago 5 Members · 17 Replies
  • 17 Replies
  • jen-cueva

    Member
    May 2, 2023 at 12:59 pm

    I’ve been pondering this and realized I typically avoid “worsening” and opt for “progression” instead. When asked how I’m doing, I often respond with “I’m fine” – most people aren’t genuinely interested or have time for the specifics.

    My mom has begun pointing out her dislike for that response. It’s likely because I still use, “I’m fine,” even when hospitalized.

    Sometimes I deceive myself to feel better during tough days. Eventually, I admit to my hubby, typically after a few rough days, “I feel like crap.” Do others find themselves doing this occasionally?

  • Carol Volckmann

    Member
    May 2, 2023 at 6:19 pm

    He Jen, you’re right, saying “I’m fine” doesn’t do it. I agree with your mother. If I am not fine I really am not really convincing myself I am. I have learned it is okay to say “not great today, but that will change” or I might say “doing okay, thank you…”

    I have found the people who really care want you to be honest with tgem snd the people who really don’t care, it does not matter. The people who care, it is refreshing just to say “I feel like crap today”.

    Our really close friends know I crash really early or need to cancel an event – they understand, accept it and ask if they can help.

    I keep thinking whenever I ask someone I care about how they are doing, I do want an honest answer.

    • jen-cueva

      Member
      May 3, 2023 at 1:57 pm

      Hi @cdvol3gmail-com, you make some excellent points! I also hope that when I ask people how they are doping, they will be honest. Certain close family and friends, I am, usually.

      With my mom, saying, “I’m fine,” makes me think I’m protecting her. But there have been days I’ve also called her crying or feeling like crap, and she knows, so there is no “protecting” her from my voice.

      Do you feel most of your closest loved ones, you can sense something by their voice or actions? Often, I tend to isolate myself when I’m feeling my worst! It’s that or keeping busy helping others so I don’t have time to worry about my complications.

      I’m getting better at this! Like everyone, I’m a work in progress, hehe.

  • Debbie Moore

    Member
    May 3, 2023 at 8:42 am

    When someone asks how I feel, I tell them.  Most of the time the answer is not positive, so I try to add the hopeful at the end, such as I’m moving slow and breathing hard, but by the end of the day I could be dancing on tables. Smiles always help me feel better. Of course, it is the physical that people ask in “how are you doing?”  For me, the physical is always the same, nothing is better, nothing is worse.  It’s the mental that seems to cause me the most trouble day to day.  All the questions that run through my head.  All the unknowns.  All the unhappiness for a life changed.  If that were the question of “how are you doing?” I would have to say – I’m fine.

    • jen-cueva

      Member
      May 3, 2023 at 2:01 pm

      Hi @debbie, interesting response! You broke your feelings into mental and physical. This is important since we may be “fine” mentally yet struggling with SOB.

      I love your comment that you may be “dancing on the tables later.” I, too, have found that I end some negative comments with humor. Humor is a way to cope at times.

      Do you feel like your mind is wondering more after you sold your store? Before, I thought maybe you were so busy you didn’t have as much time to be with your thoughts.

      • Debbie Moore

        Member
        May 9, 2023 at 12:02 pm

        @jenc I believe you are right.  My days and mind were definitely on overload with the store, but that was my normal.  Now, I think of different things I want to do and then my body says not today.  Then my mind gets angry and frustrated.  I found myself not going to a good place (in my mind) last Sunday – irritated, depressed, angry.  So I had to change all the negative into something positive.  I contacted a friend and asked if there was a Bible study I could join.  I went that Thursday.  Immediately my mind got back on track.  I definitely miss my store; even more, I miss my breathing.

      • jen-cueva

        Member
        May 9, 2023 at 1:54 pm

        Hi @debbie, I’m sorry you were headed in the wrong direction with your mental health last week. However, I’m grateful that a friend and a bible study group were what you needed to turn it all around.

        Yes, it’s frustrating when we want to do things, and our body doesn’t cooperate. It can easily cause our minds to spiral downward.

        We all have those days or moments, but as long as we find ways to pick ourselves back up after allowing our bodies to feel and experience each of these emotions is critical.

        Thankful that you knew what you needed to help lift your spirits.

        Oh, I bet you do miss that store. You’ve probably shared, but I forgot. How many years did you have that cute kitchen store?

        Yes, I miss my breathing too! Positive thoughts and prayers that you can continue to find ways to embrace your body and allow yourself a little grace on days you become frustrated. Hugs to you, my PHriend.

  • Carol Volckmann

    Member
    May 3, 2023 at 8:28 pm

    Debbie, I also like that you split up the mental and physical. Mentally I am doing just fine 98% of the time so I love the idea ending with that.

    Like you Jen, when I really feel awful, in pain or emotional I tend to isolate myself with the exception of Dick and Cloud.

    I do have a tough time when someone says, but you look great! I want to say, but I feel like crap – what I end up saying is, thank you.

    • jen-cueva

      Member
      May 4, 2023 at 1:29 pm

      Hi @cdvol3gmail-com, thanks for sharing your thoughts on this topic. It’s interesting that you, too isolate yourself when feeling your worst. Now, I wonder how many of us do that. Maybe an upcoming column idea for me.

      Yes, when I feel like crap and hear how good I look, I want to smack someone. But like you, I say thanks. Hehe.

  • DeLois Tweedy

    Member
    May 4, 2023 at 10:34 am

    Very interesting posts, and I find I can relate to all of them in some way. I like the concept of breaking it down into physical and mental. I think this is so important, as I try to ward off negative thoughts to avoid depression. Physically:  I tend to be a straight-forward person, so most of the time I answer with how I am truly feeling, but actually only to those few that are close and I know they are sincere in their question of how I feel or how am I doing. Saying “I’m fine” or “I’m doing ok” does not cut it with my daughter or my sister. They can always tell. Saying to others “I’m having a better day” or “my breathing is a little off, but I’m doing ok” I guess answers their question while allowing me to keep a little truth in my answer as well. Mentally:  I try to stay busy, but of course there days of fatigue or shortness of breath issues when yes, I do feel like crap. Those days are usually spent in isolation and quiet time, but I do try to be positive with myself; it does help me feel better – mentally. My motto: “today I will choose Joy”, even though some days don’t feel joyful at all.

    • jen-cueva

      Member
      May 4, 2023 at 1:34 pm

      Hi @deetweedy, isn’t it funny how some of us can easily relate to what each person shared? I know it depends on the day, but I, too, find your experiences relatable.

      My mom, daughter, and hubby are the ones who I can’t say, “I’m fine,” because they know by looking at me or hearing my voice.

      I also try and keep busy, but sometimes my body doesn’t cooperate. I prefer busy, though! Those days or weeks, I try to allow myself a little grace and rest more.

      Your motto is perfect! I love it; thanks for sharing, Dee.

  • Erik

    Member
    May 4, 2023 at 5:36 pm

    Being retired and all my family lives out of state except for my wife’s daughter who lives in the state.  My wife and her are the only ones who see me.  My kids know I have PAH but don’t know any effects it has on me.  Sometimes we talk on the phone and I tell them its a bad breathing day.  When my wife sees the whole truth and she asks me how I feel and i do like everyone else does “i’am fine”, but I struggle I just don’t like her to see me like that.

    • jen-cueva

      Member
      May 5, 2023 at 12:26 pm

      Hi @erikborn, when your kids talk to you on the phone, do they recognize and say something about your breathing? Or do you share that with them before they ask any questions? I know; my daughter and mom both understand on the phone by my voice, even when I try to cover it up.
      protector” for so many years. It is often engrained that they cannot be weak.

      Like you, I also try to hide it from my hubby, but he usually knows. I can assure you that your wife knows the truth. She is the one with your day and night, and they quickly learn our cover-up tactics.

      Historically, men have played the role of “the protector,” and societal norms have instilled the notion that showing weakness is unacceptable. I now wonder if men are more inclined to conceal vulnerabilities than women. What do y’all think?

      • Erik

        Member
        May 5, 2023 at 12:43 pm

        I agree men try to be the protector and play the it doesn’t bother me. I was in the military and i retired from law enforcement i dont want to say i play the nothing bothers me, but it is a scary feeling.

      • jen-cueva

        Member
        May 8, 2023 at 12:38 pm

        Hi @erikborn, thanks for your service, in case I have not thanked you already. My hubby, Manny, is a Navy Veteran, so I think the military certainly makes y’all tougher and taught not to show fear. Despite the gender, anyone in the military, I can imagine, have this trait.

        Your additional background in law enforcement must have ingrained this Mr. Tough Guy in your brain. However, you, too, have fears, despite how you show them, right?

        We have a retired fighter pilot who utilizes those traits and teachings in his life with PH and other health conditions. Do you feel like your military and law enforcement background better prepared you in some ways as you were diagnosed with PH?

  • Erik

    Member
    May 8, 2023 at 5:46 pm

    It makes me more reserve on how i feel. Sometimes i dont just jump out and say whats wrong, and it has to be pried out

    • jen-cueva

      Member
      May 9, 2023 at 1:27 pm

      Hi @erikborn, my husband, Manny, sounds like he does the same thing. It frustrates me when I know something is up, and I must dig deep and annoy him until he gives in to share.

      However, I also tend to be stubborn and will deny things and eventually give in to him. The exception is on my worst days; I don’t even try denying anything.

      Do you find it easier to share with your wife than others? Or do you continue to make her pry you open?

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