“Never let yourself become chronically ill. That is very unpleasant for other people.”
I stumbled upon a meme with this quote while scrolling through social media last week and, wow, it really touched me! Does this sound familiar?
As someone who treats pulmonary hypertension (PH) and other health problems, I found this opinion to be spot on. I have often thought, “If others feel bothered by my health problems, imagine how I feel!” Sure, my chronic illnesses can temporarily disrupt another person’s day, but I live with them constantly.
When I came across this meme, I was struggling with my chronic kidney disease and my PH. Trying to keep my electrolytes and blood levels stable while managing my PH and kidneys is no small feat. It’s really inconvenient! But I’ve learned to adapt and adjust, which can be exhausting. So it hurts when someone says I’m inconvenient them with my illnesses.
Having rare and chronic diseases is not a choice; we do not accept them willingly. And it is not just an inconvenience, but a constant battle that affects every aspect of our lives. From physical limitations to emotional and financial burdens, living with PH and other health issues is a daily struggle.
Making life a little easier for everyone
Yet despite these challenges, there are many ways we can make life easier for ourselves and those around us. One way is through education and understanding. We should educate ourselves and our loved ones on the latest PH news and research. Yes, some of your loved ones will not be interested in PH. You may lose a few friends, but the ones that remain are the ones you need.
Another option is to find new friends who may relate to our health challenges. They could become the closest bonds we build.
I am fortunate to work with Bionews, the parent company of News on pulmonary hypertension. Bionews serves more than 50 disease communities and over half of our team lives with or cares for someone with a rare disease. I have enjoyed working with and forming meaningful friendships with other people affected by rare diseases.
It also helps to be open and honest. When people ask how we are feeling, we may immediately respond, “I’m fine.” All too often, this is an automatic response because we think most people don’t have time or really want to know how we are feeling. But to find those who really care about us, we must learn to share our feelings with them and be open and honest with them.
My husband, Manny, often reminds me that he can’t read my mind. But some days I have a hard time making my needs clear because I don’t want to seem needy or inconvenient to others. When that happens, I have to remind myself how good it makes me feel to be able to help people and have others do the same for me.
While I wasn’t thrilled to see this meme in my current mindset, it reminded me that I’m not alone in this struggle. Those of us with chronic illnesses may feel like a burden during our darker seasons, but we carry on. Writing helps me process my emotions, and I hope my words help others facing similar health challenges.
Living with a condition like PH can be mentally and emotionally difficult, especially when others make comments that make us feel like our health problems are an inconvenience or burden. People without chronic or rare diseases need to understand that we don’t want to disrupt their lives. We’re just trying to manage our health and get through life as best we can.
Note: Pulmonary Hypertension News is purely a news and information website about this disease. It does not provide medical advice, diagnosis or treatment. This content is not a substitute for professional medical advice, diagnosis or treatment. Always consult 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 stimulate discussion about issues related to pulmonary hypertension.
