When Others Don’t Understand How PH Impacts Our Lives

Rebecca Lidenberg avatar

by Rebecca Lidenberg |

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Sometimes (okay, probably more often than not) you meet people who don’t understand your illness. They take breathing for granted. They don’t even notice their lungs most of the time. They don’t understand how you struggle some days, gasping, dealing with chest pain, unable to do much. And they certainly don’t understand that some days are okay and you’re actually able to do things.

They may claim you’re a liar. An exaggerator. A hypochondriac.

In times like this, it’s important not to doubt yourself. Do not bend to fit their wishes, or their limited understanding of pulmonary hypertension. Instead, use it as fuel. Educate them. Talk to them. Tell them how some days are worse than others, just like for them. Doesn’t everybody have bad days?! Perhaps ours are just a little more severe sometimes. Explain to them that our lungs will be different on days when we eat too much salt, when the weather is too hot or cold, or if we are adjusting our medications.

Pulmonary hypertension is not a “one-size-fits-all” illness. Everyone is different. Sometimes that is frustrating. When you’re desperate to meet someone who is exactly like you — suffering like you, feeling the same — you won’t find that person because no one is the same. And I think a lot of times, when people hear an illness term being used, they expect it to be the same for everyone.

You’ll never be 100% understood, and it’s easy to be upset by that or become angry when people don’t get what you go through. But being weighed down by anger and frustration won’t do you any good. It won’t make them understand better, or apologize for their flip remarks.

Remember that you have control over only you. How you react. What you say. How you teach them. How you love them, even when you’re furious that they don’t get it.

They may question it, but we’re living it. So, let’s make it a life worth living.

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.


catherine avatar


thank you for sharing your story! I have a friend who has PH, and she has been hurt by others lack of compassion and ignorance. She is an absolute joy in my life and is way more than her condition, so when people judge her it really upsets me as well. I am glad others are sharing and raising awareness.


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