Please Don’t Make Me Explain My Illness Again
Not too long ago, I met someone and opened up to them about my pulmonary hypertension diagnosis. They listened and thanked me for sharing my experience.
Later that week, they sent me a message saying they had researched my condition and wondered if I could recommend other things to read about it. I was stunned. I realized that I’ve become used to explaining my illness over and over, often to the same people.
Pulmonary hypertension (PH) is a rare disease that most people have no prior knowledge of, and many can’t seem to wrap their heads around it. It was refreshing when someone took it upon themselves to learn about PH on their own.
I thought long and hard about why that meant so much to me. It wasn’t only because it saved me from having to explain it, although that certainly was part of it. It also showed me they took what I told them seriously and were invested enough to want a more in-depth understanding of PH.
I realized that when people do this, it makes me feel less alone, because the burden of coming to grips with what I face isn’t only on me. I also have found that it relieves me of the pressure of making things sound less scary or dramatic, because they can look at an unbiased and neutral account of what my illness entails.
Of course, internet research isn’t a perfect substitute for personal experience, but it does provide a starting point for follow-up questions. Often when I’ve told people about my PH, they’ve seemed slightly overwhelmed. While they want to know more, they aren’t sure what questions to ask.
I particularly appreciated that this person had asked for resource recommendations. I know the internet can be a scary place when looking into health-related stuff, so it was great to be able to steer them toward helpful and informative sites. Many of us know that if you click on the first Google search result, what you’ll read can be a bit terrifying!
When I expressed how grateful I was, the person was a bit shocked. They thought it should be the least of what I should expect from someone who cares about me. While they might be right, unfortunately, this isn’t the typical experience for many chronically ill people. Time and again, I hear from friends in the chronic illness community about their fatigue from explaining symptoms and diagnoses.
It’s also important to note that researching PH shouldn’t be a one-time thing for anyone with a loved one living with this illness. Keeping up to date with new research and reading about people’s experiences is a great way to stay involved with a loved one’s health journey and to make sure they feel supported.
If anyone reading this is a non-PHer who knows someone with PH, firstly, well done, as this is presumably part of your research; and secondly, please know how important it is that you learn about our illness. It says “I care about you, so this is our problem now.”
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.
This is intresting informaton for me as a longtime PAH Patient. Have my PAH since 2001 !! and im still around. Trying to get new PAH or PH friends, I live in Sweden and get good treatment. I have gone the "long way" to find the right treatment for me, and we found it. I live a fair life now... With Best Regards, Peter from Sweden.
Marye C Raux
Oh I am really feeling this. I get so frustrated constantly explaining the same struggles with friends and family. Even those closest to me think I should just be cured by now or that I should demand a transplant from my docs. No matter how often I re-explain how the illness and treatments work many people just refuse to take the time to actually hear me. Much less would they go out of their way to read articles or do any other form of research.
Thank you for this!