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    • #26371
      Colleen Steele
      Keymaster

      Have you ever listened to someone advocate for themselves who doesn’t have to do it on a regular basis? Sometimes I’m dumbfounded by how poorly my husband and “healthy” son advocate for themselves when talking to doctors and nurses. You would think they would have learned something from me and Cullen, but no so much. I often prompt them to elaborate when asked a question and to ask their own questions that I know they have.

      I’ve overheard patients in doctor’s offices and hospitals who are lacking in the advocacy department as well. Talking to doctor’s and nurses is something that comes so naturally to me at this point. I forget that for many, it’s not the “norm” to advocate on a regular basis and that talking to doctor’s is not something that everyone is comfortable doing.

      Can anyone relate to what I am saying? What are the basics to advocating that you wish the public in general would learn how to do, especially family?

    • #26390
      Tracey
      Participant

      Hi @colleensteele, it’s amazing to say that I have only really learnt to advocate for myself during this and my previous hospital stay. I think I have reached a point where I’m not worried about what the doctor or nurse might think, I know what is right and what is wrong for me and I’m learning to speak up about that. I’ve also reached the point where I need straight and honest answers, and I’m not afraid to expect that or make my expectations known. I told a nurse today about a symptom that I’m experiencing and told her what I think the problem is. She looked at me in horror and said how do you know that, to which I replied that I have been sick for 14 years and I know my body better than anyone else. I asked her to please call the doctor for me so that he can prescribe medication and she stomped off in a huff.

      My sister is great at advocating on my behalf, sometimes to the point where I wish she wouldn’t. But she is absolutely horrible at advocating for herself. She never speaks up for herself, but slowly the two of us are learning from each other. We haven’t been very close before but are now thick as thieves and shes teaching me some things and I’m teaching her some things. I was amazed that she refused antidepressants even though her doctor has recommended them (and I agree) because she felt that would be self indulgent and she believes that my struggle is so great that she has no right to be depressed. I’ve had to teach her that theres a difference between self indulgence and self care, and she has every right to her feelings. Shes a real besr when it comes to me, but a total push over when it comes to herself.

      I’ve learnt a lot from reading all the contributions on this forum, and I feel empowered to speak up on my own behalf now knowing that I’m not alone.

    • #26396
      Jen Cueva
      Moderator

      This is interesting, @colleensteele. I can relate. Maybe this is why I am also an advocate for all 3 of my parents at times. They have no clue. I think that, as you mention, this is not their norm, and they do not have the experience that we do.

      Keeping that in mind, I try to be patient. I also have to remind my hubby at times when he is on the phone with his doctors. He is excellent to advocate for me, but he forgets to use that same fight when he deals with his medical team. This could also be that he does not interact with them as often as we do with my team. But, I want to jump on the phone and take over. Do you feel like that?

      Reminding others that they have a choice of who they see for their healthcare. (well dependent on insurance, right?) I also remember telling several at a PH conference that they have a right to a 2nd or 3rd opinion. I said that communication and trusting your PH team is important. I say that to all, even those without PH. Also, listen to your body and tell the doctors. Despite what some may think, we DO know our bodies best.

    • #26397
      Jen Cueva
      Moderator

      Hi, @traceyaustralianmigration-co-za, your reply to this made my day! I am so happy to hear that you are learning to speak up and tell them what is going on. We must advocate for ourselves as the healthcare system, in general, is not looking out for us like we do. Making your expectations known is important, kudos to you!

      Reading about how you and your sister have grown closer makes my heart happy. It sounds like she is looking out and advocating for you, too. You are also teaching her, that is awesome!

      Keep on making your needs known, and do not be afraid to make them mad. You do know your body best. You have made such great strides in the short time that you have been with us. What do you think has been the most helpful for you?

    • #26428
      Colleen Steele
      Keymaster

      Thank your @traceyaustralianmigration-co-za for sharing your experience self-advocating and being a witness to how your sister takes care of her own needs. I was laughing when you described your relationship with your sister, it sounds very much like my boys. I never thought they would be as “thick as thieves” as they are now. Cullen’s brother is very protective of him, worries and goes to any extreme necessary to try and help. However, when it comes to himself he has to be harassed into going to a doctor or simply, taking a break to rest for a day. His favorite expression is, “Pain is temporary.” He would never say that in regard to his brother though. If Cullen seems unwell Aidan will immediately suggest taking him to the ER. They look after each other and it makes me happy to see that.

      Truly loved hearing about you and your sister! Also thrilled to hear you mention how much the forums have helped you. Your willingness to share has been a blessing to others too.

    • #26429
      Colleen Steele
      Keymaster

      @jenc exactly! Just like yours, my husband neglects to fight for himself the way he does his family. I keep reminding him that when he speaks to doctors you shouldn’t assume they know your history to a helpful extent. “You need to provide the full picture when talking to doctors,” I always tell him.

      “Depending on insurance,” I laughed at that comment. It was either laugh or cry.

    • #26434
      V.R. Peterson
      Participant

      I’ve definitely had to learn to advocate for myself, especially after a PA refused to listen to me when I told her that I was having an interaction between my medications that almost killed me. She claimed it was impossible. Back then they didn’t know as much about serotonin syndrome as they do now. After I finally got through it, I switched doctors to one who actually listens to me. When he suggested that I start taking one of the medications, I told him that it caused problems for me. He made a note on my chart and never mentioned it again.

    • #26445
      Colleen Steele
      Keymaster

      @mamabear007 it really infuriates me when I hear about medical professionals who won’t listen to their patients. Thank God you advocated for yourself or you might not be with us now! When I go to doctors I advocate for myself well, it’s just getting to the doctors that I often fail at accomplishing.

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