Oxygen in Real Life, Part One: Young Adults Use Oxygen, Too

Oxygen in Real Life, Part One: Young Adults Use Oxygen, Too

In Life with PH
Although pulmonary hypertension caused me to give up my fancy grown-up job, I have been lucky enough to work part-time from home. I actually work for BioNews Services, the company that runs Pulmonary Hypertension News. One of my favorite tasks is browsing through stock images, trying to find the perfect image to accompany a column.

From time to time, I have to try to find images that depict patients, and the various types of medical equipment they use, like supplementary oxygen. I was browsing through the images available for supplementary oxygen and noticed how none of them accurately depict myself, or other pulmonary hypertension patients.

All of the images that were available showed frail elderly people using supplementary oxygen in a hospital bed. I think that society has this general belief that oxygen is an “end of life” therapy for “old people,” when that isn’t necessarily the case. I’ve actually had strangers ask me if I was dying when they saw me wearing oxygen at a bank. I had never seen anyone else my age use oxygen before my diagnosis, so I understand that some people are curious about why I use it. I found their questions really intrusive, however. Even if you are curious, there is no polite way to ask a complete stranger if they are dying.

Normal things with extra O2

Truthfully, I hated being asked why I use oxygen. Often, strangers would come up and make a rude comment or ask a personal question while I was out doing very normal things; working, shopping at the mall, waiting at a chiropractor appointment, grabbing a smoothie, or ― my least favorite ― while I was out on a date.

I once had a waitress ask me about my oxygen when I was out for dinner on a date with my boyfriend, Spencer. We’re in our 20s, and it took a lot of courage for us to finally try to plan normal dates after my diagnosis. I got really depressed, cut myself off from the world, and felt too hideous to leave the house; it made it difficult for us to regain any sense of normal. It took some time, but we finally started to go out for nice dinners. I remember spending that warm afternoon trying to do my hair and makeup, and picking out a cute outfit for our date.

When we sat down at our table, I was so focused on our date that I wasn’t thinking about all of the insecurities that were eating me alive. I wasn’t consumed by my anxiety until the waitress asked me about my oxygen. Spencer rolled his eyes and I let out a heavy sigh. It felt strangely invasive to have someone ask me about medical equipment, especially while I was doing something so normal.

Although I try to raise awareness for PH, I like to try to enjoy my normalcy when out and about. Wearing oxygen or a piece of medical equipment isn’t equivalent to wearing a sign that says, “Ask me about my disability/disease!”

Some pulmonary hypertension patients need oxygen to accomplish various tasks. Some patients may need oxygen simply for an airplane flight, or maybe just for sleep. Others may need it just for heavy exertion, while others may need it 24/7. Some patients use oxygen the same way someone would use a wheelchair; simply put, it helps them get around!

Representation for young adults

Kayla riding her bike

So where are the images depicting me, and patients like me? Where are the fashion-forward, 20-something-year-olds, who just happen to need oxygen as an extra accessory? Where are the images showing friends going out for ice cream, one of whom just happens to need oxygen? Where are the people using oxygen at cafes, concerts, working, and going out on dates? I know these people exist because these are all things I have done while using oxygen. (Well, the line about me being fashion-forward is a lie. I dress like a retired poker player.)

Perhaps the problem is that most people aren’t educated on oxygen use. Most assume that young people don’t need it, and many others don’t understand that oxygen is medical equipment that can help us function better.

Meet my PHriends: Young adults

I would like to introduce you to my friends Jenny and Kayla, who are young adults who just happen to have PH and use supplementary oxygen. Kayla went to college, started her own PH fundraiser jewelry line, and enjoys riding her bike ― all with her oxygen in tote. Jenny also went to college, enjoys exploring the world around her for her photography, writing poems, and going to concerts. She also happens to use oxygen to help her get around.

All kinds of people use supplementary oxygen, including young adults with busy lives!

Supplementary oxygen not only helps some patients breathe better, but also it enables some patients to do certain activities like climb stairs, work, sleep, or shower. Oxygen isn’t just a treatment you get at the hospital, nor is it just for the elderly. Oxygen therapy needs to be better understood by society as a piece of medical equipment for people of all ages and abilities.

Jenny with a new “friend”

* Please be sure to check back in the upcoming weeks for another column about Oxygen in Real Life, which will discuss the portrayal of PH in the media.

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

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9 comments

  1. Kristine says:

    I get so many questions, especially from children. I feel blessed to explain that O2 is a tool God gave me. If someone’s legs don’t work, they could use a wheelchair. How cool is it that I have O2 so I can ride my bike with my son?!

  2. Andrea Rice says:

    In my opinion if a person needs something to manage an illness they have by all means then get it. In our society with which we live there are so many stereotypes about what folks use, where they live, what they have, what they like, what they dislike and so many folks belong to groups whereby these stereotypes form, the chances of not being asked are slim by someone else. People are curious beings and since there’s no such question as being stupid, people are going to continue asking. Be prepared to answer questions, or don’t answer. The choice is yours. However, someone needs to become a leader about this illness in particular because no one’s talking about it. No talk show hosts are talking about it, the media isn’t talking about it, local news isn’t talking about it, Facebook isn’t talking about it. Who is? I found out by having severe chest pain and went to the emergency room where I wondered why I was hospitalized on the cardiac floor. I soon found out and knew what a cardiologist is because my grandma saw one but had no clue what a pulmonologist is. I’m learning now. I’m 55 and have this illness and it is hard to deal with because all the feelings, insecurities, I have are inside me. I enjoy reading stories about this illness and read comments from other people that make it easier for me to deal with it. It was suggested to me that I start on oxygen and the first thought in my mind was I’ll be so embarrassed when out in public people looking at me, because I’m not old, not retirement age, but I feel I’m in this age bracket anyway. Where do these feelings of mine come from? Years and years of bombardment from what is acceptable what we look like on the outside matters most, this is seen everywhere in our society and this rules. There are some folks that have broken the mold of this ridiculous idea, plus size models are now acceptable instead of the paper thin sickly skeleton-like women many of whom have killed themselves with eating disorders just to fit in with what is acceptable in the world of modeling. So, my point is this, when you let another person dictate how you look, you are mis-representing yourself to how you want to be seen in the public eye. What matters is what you think, not what others’ think because you are more important than they are especially strangers you don’t even know. Wear your oxygen proudly no matter what age, what stage of life you are in and stand beside your doctors because they want you to get better and work with them to come up with a pro-active plan that works for both parties you and the doctors. And educate, educate, educate everyone that asks questions. Ask complete strangers why they wear the bright blue almost blinding tie and see how they react? Just don’t stand there blushing with embarrassment. Stand firm and proud and don’t let anyone cut you down to size.

  3. Betsie Miklos says:

    I am an older PH patient who does not use O2, but this article really surprised me, or opened my eyes, re the view that O2 is seen as only for old, last stage people. One image you might use is Chole T (?sp?) the singer who always used O2 in all her performances. Maybe there would be something we could do at the next PHA conference (2018) to get lots of photos of young people using O2 and then have some kind of a publicity plan. Feel free to contact me if you want to discuss this more.

    • Serena says:

      Hi Betsie,

      Chloe is certainly very talented, and does a lot for our community. However, I would love to see us represented more outside of the PH community. How great would it be to have an actor/actress with PH on a show like modern family, or see a model in a magazine who just happens to need oxygen?

  4. Kimberly says:

    So glad someone else is bringing awareness to young people wearing oxygen. When I was put on it it was weird getting stares and questions but now I’m used to it. I just try to educate the kids that ask about it and the adults that are curious. I started an Instagram for my oxygen machine and then a blog to share other people’s stories of them on oxygen. This is so great that your are doing that too. Thank you!

  5. Kiara says:

    Hi
    I thank you so much for this article. I’m 27 and I have restricted lung disease and I need oxygen 24/7. I find it so hard because I dnt see any one my age with oxygen. It’s so refreshing to find some one that can relate,because this is not easy.
    Thank u

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