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    • #11071
      Kathleen Sheffer
      Participant

      Wearing oxygen in public can be intimidating. Pulmonary hypertension is an invisible illness for the most part, but a concentrator and nasal cannula can make the disease comparatively obtrusive.

      In this article, PH News columnist Brittany Foster writes about how it feels when people stare at her. She recommends ways she would prefer people to react to her appearance.

      Columnist Mike Naple echoes her invitation for questions from strangers as a way to increase awareness in his piece about experiencing the visibility of PH.

      How do you handle wearing oxygen in public and other times your illness is visible to the public? Would you prefer strangers look away, or ask you about it?

    • #11164
      April LeMaire
      Participant

      I cried, a LOT when I was told I’d have to wear oxygen 24 hours a day. Up until then I liked having an invisible disease. It was so much easier to be in denial that way!
      This is literally an “in your face” reminder that I am sick.

      Children are scared of me. I hear them “whisper” to their moms, “what’s wrong with her.” I smile at them and say “it helps me breath and get around easier.” They seem satisfied with this answer.

      At first I as very off put by strangers asking about my oxygen. I find it usually starts with a “my so-and-so wears oxygen, he/she has x.” I realized later their questions/observance weren’t really about me. They just want to share. Maybe it makes them feel more comfortable around me?

      I’m touched at the number of people who stop me to ask if they can pray for me. I don’t particularly like the attention, but it’s nice to know there are so many people with faith out there.

    • #11174
      Kathleen Sheffer
      Participant

      I’m glad you have prepared an answer to give children. I hate when parents tell their kids to look away and not ask questions. It’s natural for them to be curious! Usually they will ask the questions their parents want to ask, but don’t.

      That’s a great observation that people just want to share. When I feel self-conscious wearing a mask in public I try to remember that everyone else is just as self-conscious about their own appearance and more often than not too worried about what other people are thinking to notice other people.

      Once a man asked me if I had a lighter for his cigarette while I was wearing oxygen! I try to write down my encounters, especially the ridiculous ones, so I can at least have a story to tell later.

      That is nice that people tell you they will pray for you. The only time I liked the attention was when someone would give me their seat on a bus. If I wasn’t wearing oxygen, seniors would give me dirty looks for sitting down on a crowded bus!

    • #11319
      Mary Sky Mac
      Participant

      I don’t like being forced to wear O2 in public, but it’s a necessity so I accept it.

      In a way, despite the self-consciousness of having to wear it in in public, having to do so has offered a few benefits. Breathing easier , of course, is one of them. Making the disease visible to those who made it clear that they thought I was abusing handicapped resources is another. When I didn’t wear it, I often received glares and critical comments from passersby when I utilized handicapped parking; once a man even threw his half-full soda cup at me while cursing and calling me a lazy @** for parking there. So sometimes I wear the O2, even when I don’t really feel the need for it, to “justify” my use of handicapped parking or the scooter inside the store.

      Finally, the other “benefit” that wearing O2 publicly has presented is the opportunity to educate others about PH. I offer kids the same reply that April offers, but I respond to teens & adults with a brief but more detailed explanation of the very basic pathophysiology of PH, its impact on patients and the need for early diagnosis and the funding of research and medical, pharmaceutical, and social/homecare support services for patients/caregivers. As a former ICU/ED RN and LPN educator, it restores a tiny part of an important role and personal identity that PH “stole” from me.

    • #11320
      Barbara Cherry
      Participant

      I use a portable concentrator and not cylinders so it’s not really conspicuous. I have to have 16 hours a day so also have a larger concentrator for overnight In the main I don’t find people stare and sometimes people do ask why I have it. I always take it with me when I go out for a meal because the oxygen goes to digest food and takes it away from my brain and using the oxygen helps

    • #11325

      I have used oxygen 24/7 for now 18+ years. May granddaughter now 19/21 don’t actually remember me any other way. And you would think by now I would have this “public” thing under control, but I don’t. I have been using OXYVIEW glasses since 2002. And being a woman, I carry my small cylinders in my large purses. Many times, it is the puffing of my conserving devise that calls children’s attention. I used to shun away from saying anything to them, but now use the standard reply. Well “my lungs are slightly broken, and need a special/stronger fuel to keep them working.” This satisfies most and lets me interact with little ones in a pleasant way.

      The irony is that the person it bothers most, is me. That does not seem to change. Whether, I am noticed positively or negatively. Whether someone asks to help me or not. Healthy or O2 dependent, I try to remember “LIFE IS NOT A SPECTATOR SPORT!” and I am still playing!

    • #11328
      Dennis smith
      Participant

      I have been using liquid oxygen for last two years. Found a backpack on Amazon, modified it and just strap it to my back. Relatively high liter flow, 8,. So does not last long. I don’t let it defne me, excercise 2 hours daily play golf, it’s just the way it is. When someone asks me about it,, just tell them it’s a fashion statement for the geriatric set,, with a smile.

    • #11358
      Rudy Valentin
      Participant

      When asked, I tell people that; some need eyeglasses to see better, some need a hearing aid , to hear better, others use a Kane to walk, some might have a heart pacer, some others use a motor chair to move. Well, I need this oxygen concentrator to breath better!

      • #11359
        Kathleen Sheffer
        Participant

        That’s a great way to explain it and an easy way to put it in perspective. Thanks for sharing!

    • #11360
      Jan RVing
      Participant

      I am on oxygen 24 hours a day and when I in public I get a lot of people wanting to help me such as reaching items in the grocery stor that are high up on the shelf and help put my items on the belt at check out. Also I have had mothers donate their sons to help me put my groceries in the car. Noone has asked me why I am using oxygen but you can see the curiosity in their eyes. I agree with everyone else but it is what it is. I wish this disease was more advertised or more public knowledge given out with so many people world wide who have been diagnosed with PH you think you would have heard something.

    • #11369
      Kaye Norlin
      Participant

      I always preferred that people ask about the oxygen; kids usually do or they ask their parent(s) and I answer them. One child wanted to feel the air so I let him feel it on his hand. If they want to know why I use it I have a short explanation and a longer one about PH, since people generally think you have emphysema or COPD and you caused your disease by smoking. I think this can make some people fearful that you can get a progressive, incurable lung disease by luck of the draw, but information is good.

    • #12790
      Robin Taylor
      Participant

      Hey, Brittany! I just reread this article from earlier in the year…and had to tell you, Jason Aldean is my favorite, too…I even live in…wait for it…Lynchburg, Tennessee! Lol! Anyways, back on topic, yes to being stared at, prayed over, helped by people I should be helping, the list goes on… I’m at the point where I’m not angry or frustrated, I just try to see the benefit in the situation or as so many people are saying lately living with grace. So, what are they? I get to park closer (handicap spot). I get an arm workout everyday (schelping around O2 canisters are definitely heavy…I need to weigh one!). I practice agility training everyday (not tripping over my O2 tube ( affectionately known in my house as my “tail”) with two 50lb. dogs and three cats is always interesting!) I’ve become so used to my oxygen, that I try to leave it behind at a restaurant or in the car…always fun, when your head snaps back, like a horse in a bridle (okay, that one might not be a benefit). And one of my favorite benefits…being able to tell my son he has Darth Vader as a mom (yes, we’re big Star Wars geeks) “Troyyyy (hisssss), I AM your Motherrrr (hisssssssss)…. I guess it’s all in how you look at it.❤️

      • #12808
        Brittany Foster
        Keymaster

        Hey Robin!
        So, when am I visiting you in TN!? So we can stalk Jason Aldean lol!!!! But seriously though!

        I absolutely love your outlook and how you are turning these adjustments into a positive! This type of thinking is exactly how I get through the difficult days. Looking on the bright side and having a good sense of humor is so important ! Thank you for saying these things and putting a different perspective on lugging the tanks around ! I should have arms of steel by now hahahaha!!!!

    • #12829
      Robin Taylor
      Participant

      Brittany,
      You are welcome to visit anytime!!! I think you would love our little town!!! (And I’m only an hour and a half from Nashville…I hear Mr. Jason has his own honky tonk on Broadway!!!)😉
      I’m working on the arms of steel, but I’m afraid I still have a long way to go! While I try to keep thoughts positive, I still have “tizzy fits” when I’m not feeling as good as I feel I should… mainly I swear at inanimate objects, lol!!!

    • #12830
      Joyce Sandberg
      Participant

      I have never been asked about my oxygen use. However, I have been assisted by so many kind people while shopping. Many offered to reach an item and help in any way that they can. A thank you to all those kind people!

    • #12839
      KRISTINE
      Participant

      I was trippin hardcore just going out in my front yard at first with oxygen. I’m over it now. I no longer care what color the tube is, whereas before it had to be clear. I haven’t gotten the portable or cylinders yet, but I should be on oxygen 24/7. I know it will be upsetting at first the first few times I go to Walmart etc. but this to shall pass.

      • #12852
        Kathleen Sheffer
        Participant

        Exactly, Kristine – it gets easier! Adjusting to looking “different” gets easier the more times you do it, and will help you in life. I have built a lot of confidence and lowered my natural tendency toward self-consciousness by repeatedly going out in public looking “different.” When I had PH, I wore oxygen, now post-transplant, I often wear a mask. I got used to the stares. One day I had a wisdom tooth removed and I rode a train wearing my N99 mask and an ice pack strapped around my head! I took a self portrait because I was so proud of myself for doing it, hahahah. See the photo on my Instagram account here!

    • #12998
      Constance
      Participant

      Hi ya’ll,

      I wanted to share a couple of things that happened to me this year and how it changed my outlook on wearing oxygen in public.

      First I sing in a community chorale with 64 other folks. We do 2 concerts per year and my pulmonary doctor told me it is so good for me and not to quit. When leaving rehearsal one evening one of the chorale members stopped me and said, Connie I just wanted to tell you how proud I am that you do not let a disease define you, you are still doing the things you love. Man oh man, until that point I felt kind of on display but now I am proud to be a survivor.

      Second, I still do weddings on the beach in Galveston, 2 weeks ago we were setting up for a wedding and a young lady about 40 – 45 (young by my account I am 70, LOL), anyway, she said to me WOW YOU HAVE JUST INSPIRED ME, my comment of course was wonderful glad I could do that. She said really, I am supposed to wear oxygen 24/7 but I feel so uncomfortable wearing it in public. That is until I just saw you, when you turned and I saw that your backpack was for oxygen, that and my age, she said well, if you can do this and be proud so can I. She told me she would be wearing hers in public from now on.

      I am very very active, I refuse to stop doing the activities I love because I have an invisible disease. The only problem I experience now is when they ask me what I have the explanation I give is so darn long. I wish there was a business card size explanation I could just hand people that explains my PAH.

      To all out there with PAH and on oxygen, just remember you never know who you might be influencing with your positive attitude. God Bless all of us.

      • #13004
        Brittany Foster
        Keymaster

        Constance,
        Thank you so much for sharing. This is the exact thing that also keeps me going and helps me feel more confident. It’s so true that you never know who you are inspiring. People are ashamed of their illnesses often, it is just more visible when the condition can be seen. I always think about the younger kids who have oxygen that I am inspiring. I’m thinking about a mom being able to show her daughter of a picture with someone who is young on oxygen. Also am thinking about doing things like getting out, dancing, enjoying myself. People are scared to do things for different reasons and we never know who we are motivating ! Sticking with this and realizing how we help people also allows us to help ourselves.

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