The Challenges in Sharing My Diagnosis

Sometimes, it is so discouraging to have PF. … Okay, having PF is discouraging A LOT of the time. I had a hard experience this week, as I’ve had many times before. I bet you’ve had experiences, too.

Since my diagnosis with PF a little more than 3 years ago, I’ve shared my diagnosis with a lot of people. I’ve been involved in the lives of many people as a counselor, professor, author and an active member of my church – so there are a lot of people to tell.

Many people who knew me before I was diagnosed with PF naturally ask why I’m using supplemental oxygen and moving slowly. They ask because they care. I usually share that I have pulmonary fibrosis, which I developed as a rare side effect from my treatment for breast cancer. Those who ask always express sorrow that this has happened to me, which I really appreciate. Those who know someone with this diagnosis often let me know who that is, because they want to connect with me and let me know they understand.

What they say next is really hard

• My father died from that disease.
• Two of my cousins passed away from PF.
• My grandmother recently died from pulmonary fibrosis.
• My best friend’s father passed away from that disease.

And on it goes. They are very caring when they say these words. They want me to know they understand how serious it is, and what I’m dealing with. They share their own experience in a kind way, with the best motives. But…

It is really hard to have a disease where everyone who had it passed away

When I was diagnosed with breast cancer, many people encouraged me that their mom, sister or friend had it and beat it. It was encouraging to know that many people beat the disease and went on to live a full life. After the third time sharing about PF and getting this other response, I realized I wasn’t hearing encouraging stories about loved ones who beat it. Now, it’s true that for some patients there is the possibility of a lung transplant, which brings hope.

I’m not trying to be a bummer, but I wanted to share an experience I’ve had many times that is very hard. I’m guessing I’m not alone in this. I don’t focus on this reality, but do notice it when well-meaning friends tell me their experience of knowing someone who also had PF.

How about you?

I would love to hear from you in the comments below. Have you had this happen? What has it been like for you? How do you handle it?

We’re in this together, and we can benefit from our combined courage, experiences and support. Please share this post with anyone you think could benefit, or on social media.

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Note: Pulmonary Fibrosis 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 Fibrosis News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.