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    • #26550
      Jen Cueva
      Moderator

      Often since living with PH, I sometimes feel like a reality star. What I am referring to is I feel like my life on social media is out there, and often people judge me. Is it just me, or do y’all think like this too, at times?

      I have heard insensitive comments, like, “are you really sick?”, also people tell me I should not do certain things. Often, I tell my hubby and daughter not to tag me on things as I feel that I will be judged. One example, I used to drink more, but now because of some of my meds, drinking is minimal. This weekend, my hubby and I shared a drink.
      Obviously, no matter what we do, someone will judge us and not agree with something that we are doing. Right?

      Has anyone else felt judged by others because of PH? Patients and caregivers can both share your answers. Let’s talk about this.

    • #26551
      Carol Volckmann
      Participant

      Wow Jen, you hit this nail on the head! Friends, family and acquaintances either want to take over and do things for me or tell me what I should do or should not do. If I won’t let them do or follow what should be then I am being judged as stubborn. I have become known now as the “no should lady”
      I tell folks please don’t should on me, don’t should on others and don’t let anyone should on you! If you say it real fast you will make everyone laugh,but you will have made your point.

    • #26554
      Dawn
      Participant

      I think I’m still new enough to ph, even two years after my diagnosis, that I don’t necessarily feel ‘judged’ but I am pretty sensitive to being told not to ‘push’ myself or have people check if they think I’m breathing too hard etc. I explain that I want to keep doing as much as I can until I physically can’t do those things any longer. Luckily (ha!) my sister was with me when my ph dr told me to keep doing whatever I want to, unless it makes me feel like I’m going to pass out. When anyone asks me about ‘should’ I be doing that (whatever ‘that’ may be at the moment) I tell them exactly what my dr told me. I know they mean well, and I am grateful for that, but I don’t want to give in on doing things until I absolutely have to. This is a great topic Jen.

      Carol, my brother & sister & I *are* all stubborn and came by it honestly from our family! We’re all old enough now, though, to know when to push something and when to let it go with each other. Most of the time, anyway!

    • #26555
      Jen Cueva
      Moderator

      ivingHi @cdvol3gmail-com, Thanks for a laugh. I can certainly understand what you mean here as family and friends are often too quick to judge. I think with that, and yes, I tend to be a bit stubborn, the two don’t mix well.

      I love that comment, and yes, I would probably be tongue-tied before I got my point across-hehe.

      I don’t know how reality stars or anyone in that matter, living famous lives. They are scrutinized continuously about every little thing. I am far from a celebrity, but I often do feel like I can relate in some areas.

      Keep reminding them that this is your life and you do what you should do, hehe. I am happy to know that it is not just me. Although it is awful when people do this.

    • #26556
      Jen Cueva
      Moderator

      Hi @dawnt, I am grateful that your sister was with you and knows the doctor wants you to push and do things until you cannot. It’s kind of like the “use it or lose it” mentality. Each time I am in a place where my PH and health are more stabilized, this is my motto.

      I love that you mention your siblings. I am in the middle of 3 girls. Although we are all so different, it is crazy. We still are all a bit stubborn. I would like to say that we have learned now when to push back and when not to. I tend to take a backseat as I do not like drama and confrontation, but if they push me on a bad day, they know I will bite back-hehe. You would think that with age we would be better about this, but as you say, most days we are, hehe.

      Are you the middle, oldest, or baby in your family, @dawnt?

    • #26564
      Colleen Steele
      Keymaster

      I’m laughing at your reality show comment @jenc. My column this week is titled,”Life as a Caregiver Is Worthy of a Reality TV Show”!

      I’m sorry you have felt judged by others. It’s so sad that people can’t keep their thoughts to themselves and facial expressions under control.

      Yes, I have felt judged as a caregiver. Cullen’s doctor suggested that we raise Cullen and treat him the way we were prior to his diagnosis. We did our best to not change our method of parenting so yes, Cullen got reprimanded and grounded. We didn’t let him get away with things because he had PH. I know there were some who witnessed this and thought, “Look at her being stern with a sick kid”. Well, he is now a responsible, respectful, and awesome adult. He deserves most of the credit for who he has become but I would like to think how we raised him played a part too.

      Cullen has also been judged by others. He was sometimes accused of getting out of doing things by playing the sick card. I found myself at a loss for words when people close to us would say that.

    • #26594
      Jennifer Beaty
      Participant

      I feel judged every time I park in a handicapped space. I know I don’t look sick. But At a big place like Lowe’s or even my grocery store, I’m out of breath when I reach the door. Unfortunately, people don’t see that. And my sister-in-law worries about me. If I lay my phone down, walk away and don’t hear it ring. She or my brother are ringing my doorbell to check on me. It can be quite humiliating at times.

    • #26595
      Carol Volckmann
      Participant

      Jennifer, when I read your post it brought back memories I am not proud of. Before I was diagnosed with PAH and I saw someone who look healthy and fit parked in a handicap parking spot, I would say to them “do you really need to park there when someone who really is handicapped needs that spot”. I was reacting to when my mother had lung cancer and at times could not find a parking spot near the store. One day the person that I asked if they really needed to park there, they told me they had PH. I had no idea what that was until I was diagnosed. I am still ashamed of myself and feel awlful for you and others who are being judged. Now, when someone says anything like that to me, I smile and say back, “yes I need to park here”. I guess what goes around, comes around. I am so sorry Jennifer.
      Carol

    • #26597
      Jen Cueva
      Moderator

      Hi, @colleensteele, that is too funny! I hope to read more about this later.

      I commend you and your hubby on both of your boys/young men. It sounds like, despite the struggles with PH and now transplant, Cullen and his brother both are amazing and productive young adults. You should be proud.

      When you mention what the doctor said, I have heard that from other PH parents who feel like you. Well done, to you, your hubby, and both guys!

      I am so sorry that Cullen has been judged this way, too. I have also been told that I play”the sick card” by a few family members over the years. It is frustrating yet disappointing.

    • #26598
      Jen Cueva
      Moderator

      Hi @jenniferbeaty, I can relate to this on so many levels. Being in my 40’s and with PH for 15 years, I am continually being given mean looks and hear insensitive comments regarding parking in handicapped spots.

      I do not look sick, even wearing my oxygen, so I can only imagine those who do not need oxygen. I often remind myself and my hubby when we look twice at someone parking in handicapped, “I don’t look sick, either,” and we tend to stop even trying to pass judgment on someone else. We never know their story, right?

      I am so sorry that you have had felt like others were judging you.

    • #26602
      Sherri
      Participant

      I am with you Jen. My most disturbing moment of being judged came as I commandeered a scooter in the Walmart parking lot. I had just started treatment and after a day of teaching I could not walk through our local Wal-Mart. I needed some essentials, but was so tired that I just wanted to get home to my oxygen. I was wearing my infusion pump and put my to-go bag of meds in the basket when an older gentleman launched from his car and started berating me for taking the cart. I was absolutely stunned. I knew I looked healthy enough, but boy I did not feel it. He cussed me a good streak. Before I could help myself I told him that I absolutely needed a cart and who was he to decide if I was handicapped or not. I ended with explaining he would likely out-live me. I was so unprepared for his verbal assault that I was not proud of my response. I was calm, but reactive. It certainly made me think twice about judging someone else too quickly. Since that initial incident I have learned to explain my PAH condition to promote awareness and to make people think twice before they judge someone based on their outward appearance.

    • #26604
      Colleen Steele
      Keymaster

      @jenniferbeaty oh yes, I forgot about the handicap parking judgement. We even stopped by an officer once who was very skeptical until I showed him Cullen’s central line. However, I’m embarrassed to say that like @cdvol3gmail-com I had my moments of judging others pre-PH. My husband is handicap and in my mind you could “see” when people needed those parking spots. I don’t think I ever called anyone out on it but I know I felt angry a number of times. Unfortunately, there are people that really do abuse those parking spots. That’s the shame of it.

    • #26613
      Jen Cueva
      Moderator

      Hi @whitesandsgirl, I use those motorized carts at larger stores, too. I do get some looks of all ages. I realize that I am young, but even with oxygen, they still do not think I “look sick.” I am happy that you made your point, and you deserve to use those carts just as others do.

      Often, depending on my mood, when I am approached, I am calm and try to use this to educate others. Others, when I am exhausted and feel like crap, I may not do the best job of that. I am sure, and after a long day of teaching, you were already exhausted. Be gentle with yourself; we are all human. But so true, it makes us think about when we have judged others while we may not even notice.

    • #26620
      Colleen Steele
      Keymaster

      Oh @whitesandsgirl I am so sorry you were verbally attacked like that! You shouldn’t have to but did you show him your infusion pump? I use to do that with my son when questioned by someone that aggressive. Did he eventually calm down and realize his mistake in judgement – I hope!

    • #26669
      Jennifer Beaty
      Participant

      @colleensteele, the only time I have caught myself judging is when I notice people using the handicapped spaces without any handicapped placard or license plate. Maybe I just feel guilty, but I feel like I get the stink eye sometimes from some people. I did notice once a police officer slowing down to verify that I had a handicapped placard on my rear view mirror. But he didn’t even stop. Evidently, he was just checking, which I actually admired!

    • #26670
      Jennifer Beaty
      Participant

      Not to change the subject, but along the lines of being judged, does anyone NOT wear a mask when they go out? I find that I just can’t catch my breath wearing one. I have tried. I couldn’t last long at all. I definitely get a lot of “shaming looks from people. I can honestly tell that they’re wondering why I’m wearing one. When I went to vote I was asked if I had a mask. I simply said, “I have a chronic lung condition (not wanting to go into all the explanation of PAH).” The gentleman simply said, “Oh, that’s okay.” and proceeded to give my instructions on voting. WHEW! One major hurdle avoided. LOL!

    • #26674
      Carol Volckmann
      Participant

      Hi Jennifer, for people needing oxygen it can really be hard to breath with a mask. Several people I know wear a face shield instead. It protects them better than a mask and you can breath. As one scientist said “… the only way you would catch covid-19 or other viruses wearing a face shield would be if the other person got below you and sneezed upward …”

    • #26693
      Jen Cueva
      Moderator

      @jenniferbeaty, I do not go out long at all. But, I get that wearing the mask makes it more difficult to breathe. @cdvol3gmail-com, suggests using a face shield, which I loved. One reason is that I hate that I cannot wear the mask long at all. Another reason is that I miss seeing smiles and facial expressions of others when I do go out. 😀

      I am grateful that you were allowed to vote without one. I know some rare disease patients were using a card, but then I heard that it does not help in some areas.

      You are not alone struggling to breathe while wearing a mask. If you try a face shield, let us know how that works for you. I have not yet found any, but my hubby thinks he can get some for me.

    • #26697
      Carol Volckmann
      Participant

      We found a number of face shields on Amazon, but I think some pharmacies also carry them. We love them – you can breath, people can see your face and you are protected. Sometimes I wear both if I am going into a hospital or clinic. I really hope it will work for you!

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