When an Article Suggested 'It's Up to the Patient' to Raise Awareness
My friend, who also has a lung disease, recently shared an article about how wearing supplementary oxygen can help raise awareness for lung diseases. The page discussed how it was up to the patient to raise awareness for a disease like pulmonary hypertension (PH). It suggested when patients wear their oxygen, Congress will take note and want to help — that simply by wearing oxygen, we can help educate the general public.
Glazing over the article, I couldn’t help but wonder who should be responsible for raising awareness for something like pulmonary hypertension. Should the responsibility solely be on those who are diagnosed with the disease?
Many of us with pulmonary hypertension spend hours in waiting rooms each month, along with additional hours spent traveling to specialist appointments. Should this heavy responsibility lay only on those facing a heavy diagnosis? Does the general public really know what supplementary oxygen is used for?
As someone who has pulmonary hypertension, I required 24/7 oxygen use for the first year following my diagnosis. I was only 25 at the time. Leaving the house the first time took real guts.
I found oxygen didn’t really help me raise awareness for the greater good. Strangers did approach me, but their curiosity seemed to come from a place of ignorance rather than one of empathy. I heard everything from, “What’s wrong with you?” to “Are you dying?” I was diagnosed when the film “The Fault in Our Stars” was released. No one looked at me and immediately knew what was “wrong” with me. Most people assumed I had cancer. A lung and heart disease never crossed their minds, especially something as rare as pulmonary hypertension.
I also felt offended when people would come up to me to ask about my oxygen. I would never go up to someone with a visible disability and ask them why they needed certain medical equipment. While having these conversations can help spread awareness for pulmonary hypertension, I think it is reasonable to think some of us would rather not be approached for a variety of reasons. While out for a date with my boyfriend, a waitress commented that I wasn’t wearing my oxygen. It was the first time I had left it in the car, and felt brave enough to walk a few steps without it. I really just wanted to have a date with my boyfriend and try to not think about my diagnosis or the oxygen waiting for me in the car.
Despite our illnesses, sometimes we want to just leave the house and try to have a normal experience. Although I raise awareness for pulmonary hypertension through different endeavors, I didn’t sign up to be an advocate simply by being diagnosed.
I realize raising awareness isn’t for everyone, and at the very least, we all need a “day off.”
There is also a large difference between being an advocate within your own terms, and being approached in public because someone is curious about why you have oxygen, or curious about why you “don’t look disabled” and used an accessible parking spot. Not everyone with pulmonary hypertension requires oxygen or “looks sick.”
My experience with oxygen use in public did very little to help raise awareness for pulmonary hypertension. It also didn’t gain the government’s attention. This isn’t to say I haven’t tried to raise awareness for pulmonary hypertension. I have blogged for two years about my experience as a young adult with pulmonary hypertension. I have also had the honor of sharing stories from other exceptional pulmonary hypertension patients. After my diagnosis, I found very limited information existed regarding pulmonary hypertension. Sharing these stories are beneficial for the community because they are not based on statistics, they are based on individuals.
I have also conducted an interview with the Chair of Pulmonary Hypertension Canada, Dr. Sanjay Mehta, to discuss why Canadians have access to fewer PH treatments than our American neighbors. Despite the new medications hitting the market in the past several years, Canada has had access to only a few of them. There are also restrictions in place making it near impossible for the average PH patient in Canada to have access to these treatments.
To help further raise awareness about this issue, I emailed the interviews to local MPs and the prime minister of Canada. My emails and concerns were barely addressed. Despite my best efforts, it was difficult for one person to make Congress care about a rare disease. To them, I am one person. In real life, I am someone’s daughter, cousin, best friend and girlfriend. People want me here. People want me to have access to the latest and greatest treatments. In real life, I matter. I want to be here. I also want the pulmonary hypertension community to have access to the best and least invasive treatments, because we all matter.
What can we do to help raise awareness for pulmonary hypertension?
Who do you think should be responsible for helping us raise awareness for pulmonary hypertension?
Have you ever been approached by a stranger for the parking spot you used, or your use of oxygen?
To learn more about PH or donate, visit PHAware
A version of this post originally appeared here on Pulmonary Hypertension News
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