This topic contains 28 replies, has 8 voices, and was last updated by  Brittany Foster 3 months ago.

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  • #13354
     Brittany Foster 
    Keymaster

    Wearing oxygen can’t exactly be hidden to the outside world. I have had many great experiences with people being so kind to me and doing what they can to help because of my visible disability. I have also had ignorant comments made towards me. There are a lot of misconceptions about those who are on oxygen and people make many assumptions based on physical appearance alone. I am not mad for the things that people assume. I take it as a way to spread awareness for this pulmonary disease and some of the other conditions that I have. Without awareness, most people wouldn’t understand.

    Some people have assumed that because I am on oxygen at a young age, I must have cystic fibrosis. Although I find it positive that cystic fibrosis is getting some good awareness, it goes to show just how little is out there about PH. Others assume that I am waiting for a transplant and make comments like “can’t they just give you a transplant?” (as if it were that simple right!?) . Some have noticed my scar and automatically think it is heart related. A good portion of my condition does stem from the anatomy of my congenital heart defects, but it is not the reason why I am on oxygen.

    Some of the more morbid assumptions are people assume I am dying, when in fact, with the cause of my PH, there has never been a life expectancy mentioned to me (luckily!). People assume it will all be “fixed” soon and don’t realize it is a chronic condition. So when I hear things like “I hope they can fix you.” I politely say “thank you so much” knowing that it’s not as easy as I wish it was. Some people have come up to me asking me if I was a smoker or asking me if I have cancer.

    When people make assumptions, they are not at any fault. Educating the public on these types of lung diseases and PH especially, is so important. You see so many commercials and advertisements with those who are a lot older than me on oxygen. The only time I saw a young person on oxygen in the movies was when someone was near death on Grey’s Anatomy or in the movie The Fault In Our Stars when she is dying of cancer. It’s up to us to give a simple explanation of our condition to those who ask and spread much needed awareness.

    Have people made assumptions about you because of your oxygen use? What assumptions have you heard? What ways can we better respond to this to give awareness to PH?

  • #13398
     Ann Goddeyne 
    Participant

    I am 65 so the assumptions people make are a bit different. I am asked “Did you smoke?” When I say no I have pulmonary hypertension they seem uninterested. People seem to like being able to assign a preventable cause to oxygen use.

    • #13406
       Brittany Foster 
      Keymaster

      Ann,
      So true ! It is easier to handle if people assume it is our fault and maybe they can’t take the reality that this can happen to anyone. People like to think if they do all the right things they will be okay, but as many of us know, that is not always the case. Even at 27 years old people have asked me if I have been a smoker! It boggles my mind!

    • #13427
       Margie Novak 
      Participant

      Ann, I get that also…. did you smoke! Totally dislike the question. Also, I find that people are not aware of what pulmonary hypertension is when I say I have it they just kind of walk away. Like they are so ignorant they don’t want to know about my illness. I have to use the large “E” canisters when I go out as I am on 10 liters when I walk (sometimes I use a wheelchair) then people really think I am bad. When I use the big canisters people always say “you know those come in smaller sizes”.. I just look at them and smile.

      • #13439
         Brittany Foster 
        Keymaster

        Margie,
        I also get people commenting on the type of oxygen that I am using. Many don’t realize the difference between a pulse flow setting and continuous and don’t realize that some people (like me ) aren’t able to use the small concentrators that go over the shoulder that they have advertised on TV. I find myself explaining the difference to people a lot and the fact that I need continuous oxygen and a higher flow rate than what those smaller machines are able to supply. It even took my mom a really long time to fully acknowledge that I wasn’t able to use pulse flow. Even after being told numerous times by the doctors, she was still in denial and hoping I could eventually use something smaller. It certainly takes a lot of energy to educate !

  • #13410
     Marjorie Okie 
    Participant

    I am 65 and have distolic pulmonary hypertension. I have been on 24 hr oxygen for about a year. Recently I was at the optometrist with my 2 grandchildren and a man told his daughter I had COPD because I smoked too much. He just assumed this. I told him no, I never smoked and it was pulmonary hypertension. He said Oh, from too much salt! I just said, No, it’s a heart condition. Usually people just look at me in a pitying way.

    • #13412
       Brittany Foster 
      Keymaster

      Marjorie,
      That is a common misconception about COPD unfortunately too! Some people also develop COPD from chronic bronchitis and other causes. It’s unfair of people to put labels on us just because of assumptions they may have. I’m sure the person had never even heard too much of pulmonary hypertension. They probably just assumed it was regular hypertension hence the “too much salt” reference and thinking your blood pressure was high. It is so important for us to educate others and keep spreading awareness. Hopefully one day we can break these stereotypes of people on oxygen.

  • #13424
     Melainie Garcia 
    Participant

    I am starting my 5th year of being on oxygen 24/7. (I’ve used it for the past 11 years.) It took me a few years to get to the point that I would wear it consistently, then a bit longer to make it a 24/7 habit. It is a DRAG, literally and figuratively, but without it I would be stuck at home. My blood-ox drops to the 70’s when I move around without oxygen.

    I am a classroom teacher and I use a concentrator in my classroom. What I have found is that most people fear what they don’t know. So I use my PH to have fun with teaching other about what life with PH is like. They see me in all of my ups and downs and I am open about what is happening. They also see that I have humor about my situation. If I didn’t I would be so depressed all of the time. (I’m already on meds for that.) I am in a stable and productive phase of my PH, I have no idea how long this will continue, so while it does, I work full-time. Parents of my students learn that I am okay to be around and that I am productive.

    I have explained my illness in simple terms to the students, they seem to get that I need the oxygen and that my lungs don’t work well. I have a standing soapbox about keeping your lungs healthy or you could end up on oxygen like I am. I love having kids in public come up to me and want to know more about my tank (I call her AirReal), often parents try to pull them away, but I let them know it is alright and I answer their questions and let them touch AirReal. I dress AirReal up in a costume for Halloween and special events. The kids love it, it makes life a bit brighter and why not?

    Though this is a bit off topic, my favorite thing of all about wearing oxygen (other than being able to get around slowly) is meeting other members of my tribe that wear oxygen. Some of our tribe members are still in mourning about where their lives have taken them. I have those moments still (last week I broke down in tears at a faculty meeting because it had been a long day and I was having such a difficult time) but generally I am in a good head space. I hope those going through the dark times of their illness find their way to brighter days. It is easier to deal with everything if you can see the good around you and in you.

    I find that our tribe members are filled with joy, humor and love of life. It can be a journey to get there, but if you work at it, there are so many things to be grateful for, even with the stares, comments and overly helpful people around us.

    • #13428
       Margie Novak 
      Participant

      Melainie, wow, I give you credit for still working. Good for you. I have been using oxygen for 13 plus years and it is a pain at home I trip all over the green tubing and the concentrator is so loud I can barely hear myself think sometimes. But when I fall down into the 70s and hurry up and put it own and bring my levels up…. I notice it, You seem like a real fighter with oxygen and have a good attitude about it. Wish youy the best with it. margie

      • #16301

        That’s funny I tell my nephew and niece that my new girl friend’s name is Oxygena! My joke is she always kisses me with the sweetest of air…. I have always been able to make light of my bad situations.
        My own family even don’t understand. They think that one day I’ll just wake up and I’ll be skinnier and won’t need oxygen. They have been told what PAH and CTEPH can do and yet they seem to not understand it. My friends have been decent about accepting me for my issues and that makes me happy. For me I just want to live my life and try to make the best out of what I am today.

      • #16303
         Brittany Foster 
        Keymaster

        Christopher,
        I hope you always keep some positive attitude ! That’s so important when managing this illness. I’m sorry your family isn’t so understanding as to what’s going on. Have they had a lot of time to process it all? Sometimes it can take awhile for it all to settle in and for people to accept this. I know thats how it can be for people in my own family, even if they don’t fully understand it helps if they are supportive and you have every right to get that support. I’m glad you have friends who give you support and try to understand. Making light of things does help!

    • #13438
       Brittany Foster 
      Keymaster

      Melainie,
      Thank you for such a positive, uplifting post. I’m sure you filled so many people with hope that read that (including myself). I am also on oxygen 24/7 and I’m 27 years old. I’ve been on it for a few years and was a teacher myself ! I taught special education at a middle school level and loved every second of it. I could have made it work with the oxygen and loved being able to explain it to the kids in a way they would understand. I wear my oxygen in a backpack and when I walked in the hallway the students would refer to me as “the teacher with the backpack” hahaha! They were just so curious about it and were always more than willing to help me out. It really helped me see the curiosity and compassion in them.

      I ended up leaving teaching because I was getting very sick and my immune system just couldn’t handle it. I got meningitis and have since had complications from a neurological and nervous system standpoint so had to leave teaching. I nanny for 2 kids now and still find to teach kids about my condition and the need for oxygen. I try to relate it to something they know. I use the reference of an inhaler because many students know someone who uses an inhaler. I explain that it is kind of like using an inhaler to help my lungs, but I need it all the time. They seem to really be interested.

      I love your positive attitude and it is only normal to have breakdowns and difficult days. As long as we are able to pick ourselves up after (even if we need some help to do that !) . It is all just part of this life. I also use humor and make jokes and find that laughter is truly the best medicine.

  • #13445
     Donna 
    Participant

    Melanie, thank you for your wonderfully uplifting post!

    I’m new to PH and to wearing oxygen, but just this week have had at least 3-4 healthcare professionals remind me to wear it full time. I almost always have one of my grown kids along with me for appointments, and they have a nasty habit of telling the docs that I like to take it off now and then 🙁 With my most recent test results, though, I am no longer fighting it, or trying to push through fatigue or chest pain, until I can get things a bit more stable.

    I sometimes wonder what people think when I am in public with my oxygen; I haven’t had anyone approach me or ask questions yet, other than members of my church or extended family who already know I’ve been having health issues. They generally just ask me how I’m doing, or tell me they hope I’m feeling better. I have to get over the fact that people are likely making wrong assumptions…I’ve also never been a smoker, and I used to be pretty active before I got sick in April. When people do ask what’s going on, I just try to offer a brief explanation, and if the word “hypertension” pops up, I also try to explain that I don’t have high blood pressure.

    There are too many positive trade-offs to having my oxygen on that I just try to ignore people’s misconceptions. And, as others have mentioned, I’ve also noticed people being very kind…opening doors for me, smiling at me and treating me like a real person, not like a patient.

    • #13449
       Brittany Foster 
      Keymaster

      Donna,
      it is great that you have people in your life who are caring and show their concern. I know what it is like to try to avoid having to wear oxygen and to get “tattled on” for not wearing it ! I know that they are doing it out of love and concern because my siblings and mom do the same thing when they are at my appointments with me ! It’s always better to do what is best for our bodies and what will help provide us with as much energy as possible to get through each day. Without mine, I am a complete zombie and so exhausted without it ! I hate feeling so dragged down if I don’t have enough oxygen, it’s just not worth it. There are definitely good people in the world, and although I’ve had a few bad experiences with people passing judgment, the positive ones outnumber the bad !

  • #13458
     Marjorie Okie 
    Participant

    I was so happy happy happy to read all these posts! I usually feel isolated with my 24/7 oxygen but I am starting indeed to feel part of a tribe of strong women! I have only been on oxygen for a year. I still keep this part of me away from people I used to work with or hang with. I even meet with my therapist in my car rather than walk into her office. I pretty much just stay home. When I go to Dr appointments I very very seldom see anyone else wearing oxygen. This is part of my isolation. By the way, never a smoker. I use small tanks. Yes, stared at a lot.

    • #13462
       Brittany Foster 
      Keymaster

      Marjorie,
      As an oxygen wearer myself, I know how hard it is. I understand the feeling of just wanting to isolate yourself. Something that helped me to get past wanting to hide myself was thinking, “if a friend had this and had to wear oxygen, what would I tell them if they were afraid to come out in public?” Well, I’d tell them that they were beautiful exactly as they are. I would tell them that this is a part of them and they don’t need to like it but they can work on accepting it. There are amazing people out there. My anxiety makes me believe that people are looking because they think its weird, but most people are curious and we should be getting out there, educating others. You never know who you are inspiring. Maybe there is someone who is ashamed of a facial deformity, maybe someone is ashamed of the fact that they have seizures or faint in public, maybe they’re afraid too. When I’m feeling down, I think about the children on oxygen and the ones who need to know there is a life outside the walls of a house. Can I challenge you to wear it to one public place and help support you in breaking your fear? We are breathing because of this and we are stronger because of this. Let me know if you’re up for a challenge. We should start one!

    • #13524
       Melainie Garcia 
      Participant

      Marjorie,

      I can relate to what you are saying. I used to hate wearing the oxygen in public. I HATED how it looked on my face. I hated that it told everyone around me that I was broken. It took me the better part of 7 years to put it behind me.

      What changed it for me was my own mindset about it. I want to be able to be as independent as possible for as long as possible. Oxygen will help me meet that goal.

      I hated how it looked. This was one of the most difficult parts of wearing oxygen for me to overcome. I thought it made me look broken and I had this stupid looking hose hanging off of my nose. I have been so fiercely independent my entire life, this was hard to accept.

      What changed? I just made the decision that this is how I look now. I wear oxygen. Then I started wearing it in pictures. My nephews handmade birthday cards last year, they BOTH drew me with my tank and the hose, they don’t remember me without it. My daughter does not know me without it. I needed to get over it. Last year, when I had to get a new ID picture done for work, the photographer asked me, “Do you want to take your oxygen off for the picture?” My reply was, “This is how I look now. Nope.” It has been a freeing acceptance. I wish the hose could be replaced with a wireless/hoseless bluetooth device that would put air into my lungs so I can move more freely. I am waiting for someone to invent that in the near future.

      • #13526
         Brittany Foster 
        Keymaster

        Melainie,
        The Key for me was also acceptance. I like where you say, “This is how I look now. I wear oxygen.” That’s a powerful statement that shows that you are accepting what needs to be done in order to get the best quality of life you can. I feel like it’s a grieving process. Many of us are in denial, try to fight it, try to do what we an to convince ourselves it isn’t real, beg with our doctors to try to change things, but the answer and hard truth always remains the same. We NEED IT ! once we get to that point and see that for ourselves, that this is going to help us live longer, it becomes worth it and we can move into acceptance. Like you, I am also waiting for something to just be pumped into my body as opposed to across my face. Even if the cannula pieces were up there but delivered oxygen somehow besides the tubing ! One day I hope!

    • #13698
       Melainie Garcia 
      Participant

      Marjorie, I cannot tell you how much talking to others on oxygen helps me. I LOVE talking to others wearing oxygen. You can commiserate, you can problem-solve together, your can laugh about life with a hose, you can learn a new tip, or (my favorite) you can recognize another fellow human who is also trying to get through their days while wearing oxygen and bring light to one another.

      Once I was walking out of a grocery store. A man, wearing oxygen, saw me come out of the store, threw his arms up into the air and said loudly, “There you are!! I’ve been looking all over for you!!” I immediately smiled and said, “I’ve been right here!!” We laughed, wished each other well and went on with our day. That happened a couple of years ago, yet it still makes me laugh when I think about it. I hope he is doing well.

      I hope you will find your way with wearing your oxygen in public. You will feel so much better when you do.

      Melainie

      • #13701
         Brittany Foster 
        Keymaster

        I love connecting to all of my oxygen friends for the same reason. The amount of support I receive truly outweighs the fear I have of wearing it! Focusing on my positive experiences and the kindness of others literally melts away insecurities for me.

  • #13529
     Marjorie Okie 
    Participant

    Thanks Melanie for your reply. I have not let non family know I’m on oxygen. My Facebook photo and the one here does not show me wearing it as I take it off for photos. I’ve been on it about 16 months now. I die inside when people stare but have begun looking into their eyes and smiling though this is hard for me. It’s a process coming around to acceptance that that is who I am. Good for you for being there!

    • This reply was modified 9 months, 3 weeks ago by  Marjorie Okie. Reason: Misspelling
    • #13531
       Melainie Garcia 
      Participant

      It is a process.

      Do what you can, when you are ready. No one else can dictate how you handle this process.

      I wish you lots of patience with yourself and love of yourself. Sending you good vibes.

    • #13541
       Brittany Foster 
      Keymaster

      Marjorie,
      I truly feel for you. I know how hard it is. Even after over two years of wearing it and knowing exactly why I need it and how it helps, It is still hard for me to wear it around a group of friends and I try to sit more so that I can take it off when I’m around them. As Melanie said, It’s a process and little by little it does get easier to accept it and make it a part of who you are, but it takes time !

  • #13746
     Marjorie Okie 
    Participant

    I appreciate all the words of support. Thank you all. I have begun just doing my thing and wearing my oxygen. I just got a backpack and feel much less awkward. The shoulder bag was hard, always slipping off as I walk with a cane. Unfortunately I see very, very few people wearing oxygen even at my pulmonologist! I live in a small mountain town. When I have seen someone they are quite elderly and in a wheelchair and it’s not really a connection though I do smile at them.

    • #13756
       Brittany Foster 
      Keymaster

      Marjorie,
      The small steps you are taking to try to get comfortable with wearing your oxygen are actually some of the biggest steps! I’m proud of you and I know how hard it is to wear in public especially since there aren’t many people that are your age with oxygen on. I have not seen ONE person near my age or even close with oxygen, except for my social media friends.

      You never know what people are struggling with and what health conditions the seemingly “healthy” people have. I have had countless people come up to me and actually thank me for having confidence (even if it’s forced) with wearing oxygen. People have said “my son is on oxygen, my daughter was on oxygen, I may need oxygen, etc”. I also have heard stories of people being too embarrassed by things like a colostomy bag, a PICC line in their arm, a diabetes monitor on the skin, or another medical equipment. You never know who you are giving some type of courage to and support to. 🙂

  • #13761
     Marjorie Okie 
    Participant

    I just came back from the ocean and my dream of feeling sand and putting my feet in water first time in years. I struggle hard with mobility so used my rolling walker to gain strength. I used it till the sand then with my daughter and grandson helping made it to the water. I sat on my walker for an hour while water splashed up to my knees. My grandchildren gathered up shells for me. It was one of my happiest days ever! The whole weekend I wore my oxygen without self-consciousness. It’s becoming more like a part of me, just like my cane. It’s who I am now.

    • #13763
       Brittany Foster 
      Keymaster

      Marjorie,
      I am so happy to hear that it is becoming part of you and that you are able to do the things you have wanted to do! It fills me with such joy to hear about your positive and wonferful day that you had. I believe that the water and ocean has healing benefits ! Glad you had such a special moment with your family. Wearing oxygen WILL get easier 🙂

  • #16202
     Elaine Wanhala 
    Participant

    I am really happy to have found this site. I am learning a lot. And happy to read all these comments about wearing oxygen in public. I wear mine going grocery shopping or to the doctor’s office, but I was reluctant to wear it to a restaurant. I am starting to do that though. I have been on it for 3 years.

    • #16208
       Brittany Foster 
      Keymaster

      Hi Elaine,
      I am 27 years old and also require oxygen when I’m exerting myself. Admittedly, sometimes I don’t wear it as I’m supposed to for a number of different reasons. Sometimes my tanks run out on me and I don’t feel like going back to recharge and then back out again so I just try to “tough it out” but my body pays the price for it afterwards. I always found that the more I wore it, the more I realized that people will just look over briefly because they are curious and then they just accept it as part of “you”. I also realized that it’s ME that has the problem with how it looks or the vanity aspect of it all, the people who I’m around and the ones who really care about me just want what is best for my health. The more I wear it, the less I even realize that I even have it on my face!

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