Don’t Disable Your Self-awareness Because of What Others Might Think

I think of birthdays and New Year’s Eve as self-awareness holidays. People often use these holidays to make resolutions for personal change and better life choices.

November is Pulmonary Hypertension Awareness Month. During this time, we advocate for pulmonary hypertension (PH) diagnosis, treatment, and care. With campaigns like “30 Days of PH,” we spread awareness by sharing personal PH experiences with others.

But what if we also use it to work on self-awareness? Is there something PH-related you could use to improve your quality of life?

Perhaps start by asking yourself, “What part of PH awareness makes me the most uncomfortable?”

Is there something you avoid because of the unwanted PH awareness opportunities it might create?

For our family, this came up every time we parked the car.

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The accessible parking placard

Do you have one, and if so, do you hesitate to use it?

This has been a popular topic in the Pulmonary Hypertension News Forums, because at some point, patients are given the opportunity to apply for one.

As caregivers to our son Cullen, my husband and I were encouraged to order one when he was diagnosed with PH.

I was trying to come to terms with the fact that my 8-year-old son had a life-threatening illness, and being told disabled parking would benefit him somehow added to the heartbreak.

When it arrived, it felt like we had received a sympathy card, and attached to it was a parking spot instead of flowers.

What does it mean to be disabled?

To better understand the definition of disabled, we should first understand what it isn’t.

It doesn’t mean handicap, which, according to the Merriam-Webster dictionary, is a “disadvantage that makes achievement unusually difficult”; an impassable flight of stairs, for example.

Disabled means “impaired or limited by a physical, mental, cognitive, or developmental condition: affected by disability.”

In other words, my son was disabled because of his overworked heart and lungs, which often caused chest pains and made it difficult to breathe.

In the beginning, we only used the disabled placard when Cullen was experiencing significant side effects from dosage changes in his PH treatments. But as his PH progressed, it became apparent that although he was fine walking into places, he often was exhausted and out of breath when leaving, and that’s when having a parking spot close by wasn’t for convenience but for necessity.

From that point on, we used the placard all the time, especially when Cullen was placed on continuous supplemental oxygen.

Sometimes we were questioned about our need for disabled parking. Occasionally, Cullen would receive stares and hear whispers when people realized the parking spot was for him.

Let them stare

Cullen has experienced his share of stares over the years when people noticed him walking to or from disabled parking with oxygen in tow, continuous intravenous Flolan (epoprostenol GM), and milrinone tubing protruding from his shirt into a backpack.

To protect the new heart and lungs Cullen received in 2014, he wore a mask in public all the time, years before the pandemic made it the norm to do so. PH was gone, but the stares remained.

Did the looks and comments ever bother Cullen? No.

I recently asked him why, and he explained: “When people look at me, whisper, and make assumptions, that problem is gone the second they — or I — walk away. But if I allow myself to be intimidated into not doing what I need to do to keep myself well, then I might not be so lucky to walk away unscathed.”

Are you familiar with the idiom, “Don’t waste your breath”? Cullen advises PH patients to take it literally. Don’t waste your breath worrying about what others think. Use the accessible parking placard!

Or make them aware

Maintaining your composure when people stare, or especially when they confront you about parking in a disabled spot, is difficult. But I assume you want to spread awareness and not feed ignorance.

Take advantage of the situation by calmly and clearly explaining why you use accessible spots.

Offer your accuser a printout of the Pulmonary Hypertension Association (PHA) wallet card that describes PH, its symptoms and risks, and includes a link to the PHA website for more information.

Look up the qualifying conditions for accessible parking where you live. Washington state, for example, specifically lists lung disease, the use of supplemental oxygen, or the inability to walk 200 feet without needing to stop and rest as reasons for a placard. Print out the list, highlight areas that pertain to you, and keep it handy to share if questioned.

Awareness begins with your own and then explaining things to others.

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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.