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    • #20884
      Brittany Foster

      Relationships aren’t just about spouse/ boyfriend/ girlfriend relationships. One of the most important relationships when managing a chronic illness is the relationship we have with our medical team. This includes ALL parts of the medical team, from PH specialists, to primary care doctors, dietitians, and therapists. I find it best when I communicate through written words vs being actually at the appointment. This can make it hard for me to say what I need to say at appointments or really express how I’m feeling in a way that is easy to read. I can put on a happy face at appointments and confuse doctors when I talk about my symptoms being really hard to manage. On the outside I convey a different message than what I’m actually feeling.

      This makes communication with my providers feel challenging and there can be a lot of miscommunication at times. To try to avoid this, I like to use online portals when they are provided to me and when the doctors are responsive to online messages. For the most part I send messages through patient portals, but other times I have my doctor’s personal cell phone numbers or their email addresses and have contacted them this way as well to get a speedy reply and write out any questions, worries, or recent challenges.

      How do you communicate best with your doctors? Do you notice challenges in communication with doctor/ patient relationships? What do you think can be done to improve this and make communication more effective?

    • #21181
      Sunny Simson

      Very nice post and a very actual topic! I should agree with the author and say that it is always easier for me to communicate through mail or through various messengers. I think in this case the consultation can be more professional, plus you definitely won’t forget what the doctor told you.

      • #21189
        Brittany Foster

        I agree, it definitely is so much easier to communicate with them online or through messenger apps. Some of my doctors have apps that are HIPAA compatible that I can message them questions on and they can look at my symptoms and track progress. It’s a better, more tech friendly way to communicate with patients effectively and efficiently. That face to face interaction sometimes makes me feel really overwhelmed so I often forget what they say and end up having to message them again anyways. Do you find that you are similar at face to face appointments?

    • #21195
      Colleen Steele

      @sunny070 and @brittany-foster some things are too important not to have a phone conversation but I definitely prefer e-mail. As Sunny mentioned, that way you have the doctor or nurses response in writing that you can refer back to. Even at appointments I have sometimes asked the nurse if she could e-mail me what she just said so that I won’t forget.

      • #21209
        Brittany Foster

        I like getting the “after visit notes” that they usually post to my portal. It is always thorough and lists my current health conditions of concern. It’s easy for me to just print up and have with me or screen shot it if I end up going to a local hospital or something and they need my most recent visit report. Do your doctors do these kinds of after visit notes? It’s way more detailed than just the basic summary that someone would get.

        • #21216
          Colleen Steele

          Those after visit notes are great! Having access to them on-line is fairly new. When my son had PH his nurse would type them up and mail them to me. I felt bad because one time she asked me if I had been receiving and reading them. She commented that she does that for all her patients without knowing whether it helps them. I then realized how much effort she was putting into providing families with as much detailed information as possible and I couldn’t thank her enough.

          In addition to having access to them on-line we always receive a paper copy at the end of each appointment. I always keep the most recent one in my purse just in case I unexpectedly need it.

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