What we can do when others find our health challenges ‘inconvenient’

A columnist shares tips for those living with chronic and rare diseases

Jen Cueva avatar

by Jen Cueva |

Share this article:

Share article via email
Banner image for

“Never get a chronic illness; it’s really inconvenient for other people.”

I stumbled upon a meme with this quote while scrolling through social media last week, and, wow, did it hit home! Can you relate?

As someone managing pulmonary hypertension (PH) and other health conditions, I found this sentiment to be spot on. I’ve often thought, “If others feel inconvenienced by my health challenges, imagine how I feel!” Sure, my chronic illnesses may briefly disrupt another person’s day, but I live with them constantly.

When I came across that meme, I was in the thick of battling my chronic kidney disease and PH. Trying to keep my electrolytes and bloodwork stable while managing my PH and kidneys is no small feat. Talk about inconvenience! But I’ve learned to adapt and adjust, which can be exhausting. So it stings when someone says I’m inconveniencing them with my illnesses.

Having rare and chronic illnesses isn’t a choice; it’s not something we willingly sign up for. And it’s 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 conditions is an everyday struggle.

Recommended Reading
A person is shown preparing to enter a scanning machine.

Amount of normal lung volume linked to PH prognosis in study

Making life a little easier for everyone

But despite the 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 about the latest PH news and research. Yes, some of your loved ones won’t care to learn about PH. You may lose a few friends, but those who stay are the ones you need.

Another way is to find new friends who can relate to our health challenges. They might become some of the closest connections we build.

I’m fortunate to work with Bionews, the parent company of Pulmonary Hypertension News. Bionews serves more than 50 disease communities, and over half of our team either lives with or cares for someone with a rare disease. I’ve enjoyed working with and creating meaningful friendships with others affected by rare conditions.

It also helps to be open and honest. When people ask how we feel, we may immediately reply, “I’m fine.” Too often, it’s an automatic response because we don’t think most people have time or truly want to know how we feel. But to find those who genuinely care, we must learn to share and be open and honest with them.

My husband, Manny, often reminds me that he can’t read my mind. But some days, I struggle to make my needs known, not wanting to seem needy or inconvenient to others. When this occurs, I need to remind myself how good it makes me feel when I can help people and allow others to do the same for me.

While I wasn’t thrilled to see that 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 in our darker seasons, but we press on. Writing helps me process my emotions, and I hope my words benefit others who are facing similar health challenges.

Living with an illness like PH can be mentally and emotionally difficult, especially when others make comments that leave us feeling as if our health issues are an inconvenience or a burden. Those without chronic or rare diseases must understand that we don’t want to disrupt their lives. We’re just trying to manage our health and navigate life as best we can.


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.

Comments

Bonnie Newton avatar

Bonnie Newton

Thanks for this article!

Reply
Sandra Joan hiatte avatar

Sandra Joan hiatte

I know how you feel. I have been really down the last 2cweeks. My hx includes heart disease with valve replaced,copd,and stage 3 kidney disease--along with anxiety and depression. I am a retired nurse and use to tell my patients that all they needed to do was look a few doors down and they would find someone worse then them which is so true. I get mad at myself because I am still able to walk,talk,take care of myself but this sob and inability to get things done like I use to and still feel sorry for myself. Even with a pacemaker my heart rate can be iratic at times. Today just feel like a total mess-but I know it will get better. Sorry to drag people down.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.


A Conversation With Rare Disease Advocates