“You look so good.”
“What’s wrong with you now?”
“But you’re too young to be on oxygen.”
“Wow, you don’t look sick at all.”
“But you went out last night.”
If I had to guess, I’d bet that most people with pulmonary hypertension (PH) have heard one of these comments. But it isn’t only the PH community. This is common among everyone with a rare disease.
No, I don’t have a cold or the flu. I have PH, a rare disease. There is no cure. Unfortunately, this means that PH doesn’t go away.
I could write a novel describing the vast number of comments I receive from others. These comments often come from strangers. People find it necessary to voice their opinions about my PH. I am still unsure why they think this is helpful.
Some people don’t think before they open their mouths. I have received some relatively harsh and insensitive remarks over the years.
Unfortunately, living with PH for 15 years has not made me resistant to these types of comments. Perhaps I am more tolerant of them, depending on the day, but one doesn’t “get used to it.”
Kids frequently stare and ask me questions. I explain that I need oxygen to breathe. But adults are often the worst offenders. At times, I can predict some of these conversations. Yes, I owe that to being a long-term survivor of a rare disease.
For this reason, people are generally uncomfortable talking about the disease — especially a rare disease like PH with no cure. It’s almost like they think I am contagious. As a result of their fears and anxieties, I tend not to share my struggles with others. I want to protect them. In reality, this also protects me from ill-chosen comments.
While writing this column, I found an informative article called “12 Things You Should Never Say to Sick People.” Author Toni Bernhard is on point, suggesting that most people don’t know how to talk to those with chronic illnesses. As the article’s subtitle notes, “Much of the way we talk about disease is terribly flawed.”
Maybe people are “well-intentioned,” Bernhard writes. I believe my work in hospice care nursing helped me develop a different perspective about illness in general. Talking openly with patients, families, and my colleagues came naturally, as we discussed these difficult topics daily.
When I read Bernhard’s article, I had flashbacks because I have heard almost all 12 of the listed comments. When I hear these comments, I try to remind myself that often they are not intentionally insensitive. A lack of communication and chronic disease education are the culprits.
Some days, I spend extra time educating someone about my PH when I hear their snide comments and remarks. Other days, I just let it go. (Yes, I started singing the theme song from “Frozen,” too.)
Then there are days, usually my worst days, when I let this bother me more, and I break down and cry. Can you count the times that has happened to you?
When living with a rare, life-threatening disease like PH, some of us have to compartmentalize our illnesses. We try to balance life with chronic illness symptoms while maintaining some sort of “normalcy.” There are many times I do not offer any information about my PH. I hide the “true me” as I approach others with a smile, no matter what may be going on internally.
What insensitive comments have you heard? Do you usually “let it go” or do you stop to educate those who comment? Please share in the comments below.
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.
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