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    • #23040
      Colleen Steele

        I hope this question goes unanswered because there aren’t any experiences to share.

        Children are sometimes cruel and bullying can occur in both the physical or emotional form. Has your child been bullied due to the their limitations, medical equipment,needs or other aspects of their day to day life with pulmonary hypertension?

        What action if any have you taken against the bully and how are you helping your child deal with the physical or emotional trauma that they experienced?

      • #23046

        I have heard some pretty rude remarks by some about my oxygen but luckily for me, my sister was right there with me to stick up for me. It is crazy because people are so unafraid to say things to a group of women that they think will not fight back, but nobody would DARE say anything in front of my boyfriend. When I was with my sister. at a casino a group of our age guys said out loud “Is this the Grey’s Anatomy convention”. They probably expected us to not say anything and keep quiet but my sister let them HAVE IT!!! Safe to say they legit ran out of there so fast. But it is something that sticks in my mind and something that I am self conscious about, so to get called out by others is just insensitive and really hurts.

      • #23071
        Colleen Steele

          @brittany-foster luckily my son’s classmates were always kind to him. I would even go as far as to say they never focused on his differences due to PH. There was one child who seemed to be jealous of the perceived “attention” that my son received due to his illness. He would sometimes say mean things which Cullen never reacted to but his brother would. There were many times I had to calm him down after school because he overheard an unkindness to his brother.

          Strangers were the trouble makers and it always amazed me how he would experience it from adults more than children. We walked into a store once and a grown man asked him in a sarcastic tone, “What’s with the mask?”…this happened post transplant. I was so proud of how my son calmly explained why he was wearing it. I hate to admit that I found pleasure in how embarrassed the man appeared to be once given the answer.

        • #23084

          @colleensteele I find that older people without illness don’t have as much knowledge about invisible illness about our generation does. The older generation is sometimes that generation that doesn’t believe in mental illness and thinks everything can be solved with discipline. Unfortunately that is not how the world works but until people have been through things themselves they will remain to be ignorant unless they are educated and taught a valuable lesson like I hope this person was!

        • #23098
          Colleen Steele

            @brittany-foster your point is sad but true. I even have my own memory as a teenager when I expressed to someone I loved and trusted that I felt depressed. He rolled his eyes and asked what’s with teenagers today and being depressed? “When I was a kid, depressed wasn’t even a word anyone used.” I’m 48 now and it still feels like people of a certain age still sometimes have this lack of understanding about depression, other forms of mental illness and invisible illnesses in general. I remember an adult once stating that they thought my son was using his illness to get attention. “Oh, you mean when he’s clutching his chest in pain or crying because he can’t breath? Yeah, you’re right…he just trying to get attention.”

          • #23110

            @colleensteele That is so unfortunate and awful to hear that someone said that about your son. It must have really put you into “mom mode” . I know my mom would have had a word or two to say to them. Luckily for me I usually have back up when rude comments are made. I also have the voice to speak up and explain to those that are older and may not understand just how mental illness and mental health really impacts someones life, especially when living with a chronic health condition like ours with frequent hospitalizations and repeated trauma.

          • #37665

              It’s important for parents, teachers, and other caregivers to be aware of the potential for bullying and to take steps to prevent it. This may involve educating children about differences and encouraging empathy, providing support and resources for children with health issues, and addressing any instances of bullying quickly and appropriately.

              • #37673
                Jen Cueva

                  Hi @jenefree, thanks for adding your thoughts about bullying because of health issues. Empathy should be taught at home. However, parents often leave these things for the teachers to teach their children.

                  Today, even those without health issues are bullied. I’ve seen stories about those in grade school. It’s so sad how young some of these kids being bullied and do the bullying are.

                  Education and resources, as you mention, are essential.

                • #37683
                  Colleen Steele

                    @jenefree you are so right, education is the best way to fight bullying. We had an ACCREDO nurse come out to my son’s school every September for a private information session with the Principal, teachers and staff, then a brief session with his classmates and sent information home to the parents.

                    Cullen was very fortunate to have classmates who balanced well keeping him safe while not treating him different. There was only one boy (because there is always one) who had jealousy issues because he felt Cullen received too much attention. He could be a bit of a bully at times which bothered Cullen’s brother more than it did him.

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