Opening Up About My Diagnosis

Eleanor Bird avatar

by Eleanor Bird |

Share this article:

Share article via email
opening up

One of the hardest parts for me about having a serious chronic illness is telling people about my condition. I’m always worried that they will look at me differently. And every time I inform someone new about my diagnosis, I have to relive it.

Before my pulmonary hypertension (PH) diagnosis, I assumed that if I were ever to become ill, all of my friends would step up to be there for me. While I’ve found my assumption to be mostly true, it’s not always the case. Some people can’t handle my disease and became distant.

Luckily, most of my friends have been absolutely amazing. But I could tell that some of them were uncomfortable talking about my condition. Some want to brush it under the carpet and pretend that everything is normal. After all, an incurable disease isn’t the most fun topic.

However, I realize that I am partially to blame. I have found myself withdrawing from particular friends because I didn’t want to tell them about my PH diagnosis or discuss my challenges. I hated the idea of people feeling sorry for me. I wanted them to treat me as they always have.

Join our PH forums: an online community especially for patients with Pulmonary Hypertension.

It’s tricky when I meet new people. As I’m still relatively well, people wouldn’t know that I’m ill unless I tell them about my condition. So, each time someone comes into my life, I have to decide if, when, and how to tell them.

At the beginning of a new friendship, my health condition is the last thing I want to bring up. At the same time, it’s incredibly difficult to get close to someone while withholding a significant detail about my life. Sometimes when I don’t let people know about my PH, I feel as if I’m living a lie.

My typical approach is to tell the people I trust when I feel ready. I can’t control other’s reactions, but opening up will inevitably bring the most important people close to me. And who needs fair-weather friends anyway? While it can be awkward and painful to have the conversation, I find that it almost always brings me a sense of relief.


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.


Leave a comment

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 Your email address will not be published.

A Conversation With Rare Disease Advocates