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    • #33276
      Colleen Steele

      A topic that is discussed often within the forums is the struggle to get family, friends and strangers to understand what it’s like to live with PH. Patients often feel like the “outsiders” just don’t get it and have a tendency to be judgmental.

      My son had experienced his share of not being understood. I wish I had a dollar for every time we heard, “But he looks so healthy”!

      In my column this week, (click on link) “How to Benefit by Playing Devil’s Advocate in the Fight Against PH“, I offered a way of dealing with the comments and stares in a way that could potentially help you remain calm and clear headed and ready to educate the offenders about PH.

      Try playing devil’s advocate. I am able to because my son wasn’t always sick. He didn’t become symptomatic until he was 6 years old, so I know a bit of what it’s like to have no clue what PH is and that my son’s breathing problems could be anything other than asthma. I remember a time when I thought you could “see” when someone really needed a handicap placard. I remember taking a lot about “living” for granted. I also know that I never said or did anything to intentionally offend or hurt someone, but it’s possible that maybe I did without realizing it.

      I like to believe that people who put their foot in their mouths at least have their heart in the right place.

      If you have moment, read my column and share your thoughts. Do you think playing devil’s advocate could help you deal with the negative ways people react and respond to your PH?


    • #33286
      Jen Cueva

      Hi @colleensteele, what a profound column that many can relate to! I love the tactic of playing the “devil’s advocate.” We all make mistakes and often say something to someone that comes off not quite as we intended. I’m guilty of this in many conversations. Technology doesn’t help; texting or emailing often can be interpreted wrong.

      I’ve had days when I was frustrated and hurt. But other days, like you, I try and give others the benefit of the doubt. For me, this also depends on how I’m feeling that day. For example,l if I’m having increased symptoms like chest pains and feeling horrible, I become agitated easier, and my patience is close to non-existent on those days. Can anyone else relate?

      I love how you share using advocating and education as crucial components in helping others better understand PH. I used to carry those wallet cards from PHA around and hand them to those who questioned when I parked in handicapped parking ar asked questions. They were helpful on many occasions.

      Thanks for sharing this column about such an important and often discussed topic.

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