What’s life like for young people with pulmonary hypertension? Serena Lawrence shares her experience
Although pulmonary hypertension (PH) 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 favourite 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 favourite ― 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
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.)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?
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.