Do You Tell Everyone You Have Lung Cancer?

By now, all my family and friends know about my lung cancer diagnosis. Even acquaintances are aware since I frequently post on social media about my journey and advocacy work. Every now and then I am in a situation with people who have no idea about my diagnosis, however. While I don’t just start talking about lung cancer to everyone I chat within a grocery store checkout line, I do consider it part of my identity and I often wish to share my diagnosis and involvement in advocacy work.

Our recent trip to a small town B&B

Recently, my husband and I went away to a small town B&B in Wisconsin overnight. I love staying in B&Bs; although my husband doesn’t like them as much as I do, he humored me this time since it was Valentine’s Day! As anyone who has stayed in a B&B before knows, there’s often a “group” breakfast in the morning with all the overnight guests sharing the same table. I love talking to people and have always found this a fun part of the experience, but it’s one of the reasons why my husband doesn’t particularly enjoy B&B stays.

Chatting over breakfast

At this B&B, we woke up early for breakfast and there was only one other couple eating at the same time as us at the central table. After a little bit of small talk, the woman in the other couple asked what kind of work my husband and I both did. While I was gulping down my much-needed first cup of coffee of the day, my husband quickly jumped in and said he works as a statistician for a logistics company and I am a stay-at-home mom. I was kind of taken aback by the way he described me and not especially pleased. I felt that he ignored a huge part of my identity by his comment and I wasn’t sure why he felt it necessary to speak for me. I spent the rest of the breakfast stewing over this and not saying much. Those of you who know me personally understand how much I like to chat, so that really tells a lot about how I felt. To make matters worse, the other woman, who was very sweet and almost young enough to be my daughter, kept going on and on about how wonderful it was that I was a stay-at-home mom and how her mother did the same while she was growing up.

Now, of course, there’s nothing wrong with being a stay-at-home mom. I left the workforce when my older son was born and I was a stay-at-home mom for years while my boys were young. However, since my diagnosis and involvement in lung cancer advocacy, I usually answer any questions about what work I do by relaying that I was diagnosed with lung cancer over 5 years ago and I now advocate for lung cancer awareness and research. I feel that this is a pretty simple and straightforward answer and leaves others free to ask more questions or not, however they please.

Acknowledge my diagnosis and advocacy

As soon as breakfast was over, I confronted my husband (with somewhat of an annoyed tone) and asked him why he said what he did. He was actually surprised that I was upset and told me that he thought I wouldn’t want to get into my whole story with strangers at a B&B breakfast. I realized that he meant well and was actually trying to protect me in his role of caregiver! We had never discussed before how I would want to answer in such a situation, so he just said what he thought would be best. This incident led to an open discussion between us about how important it is for me to acknowledge my diagnosis and my advocacy work if directly asked in order to avoid feeling as if I am hiding a major portion of my identity.

An open conversation about sharing my diagnosis

For any of you who might be feeling sorry for my husband and think I am “throwing him under the bus” with this article, please know that I DID ask him if it was ok for me to write this story. He agreed with me that sharing our experience might lead to better conversations between patients and their caregivers about how much to share when meeting new people. Since my husband and I had never really talked about this in over 5 years, maybe our misunderstanding about what to say might help others discuss this issue and figure out a way to be on the same page. My husband promises that he will no longer try to protect me by answering for me in the future!

Editor’s Note: We are extremely saddened to say that on June 23, 2024, Ivy Elkins passed away. Ivy’s advocacy efforts and writing continue to reach many. She will be deeply missed.