The Best Response 

It is always interesting to me how people react when they learn my daughter has cystic fibrosis. After more than 4 years, I still can’t gauge what kind of response I will get. For the most part, people are surprised and kind. Cystic fibrosis is such an invisible disease, so when they see my spirited and active daughter, it IS genuinely surprising to learn this.

Responding to comments about CF

As a parent, some responses have been hard to hear. The one that sticks with me years after I heard it was “Oh, how awful. I’m so sorry your daughter is sick.” I immediately responded that she’s actually doing very well and thanked this person for their concern, but it really irked me hearing those words. Awful. Sick. These words neither match my daughter, nor most people I know with CF.

Many people have responded that they know/knew someone with CF and I usually immediately know if the person has since passed or not based on whether they hesitate. I know this is extremely triggering for many people to hear, particularly CF parents, and I understand that. However, I’m not necessarily bothered by this response. I feel sad for their loss but appreciate their willingness to connect with me about the disease. But their story is neither Margo’s story nor her circumstances.

Margo is more than her CF

CF is such a rare disease that when it sparks recognition in someone, whether it is a happy or sad story, I welcome it. I always follow up with how well Margo is doing and how hopeful I am for her and others with CF. I mention that the medication and treatment for the disease has changed so significantly in Margo’s lifetime, and this usually wraps up the conversation on a positive note.

I’m not only a CF mom, but I’m a CF cousin as well. My cousin Lisa had CF. She passed away in 2014 at the age of 27. Prior to Margo, I probably have responded the same way others have by saying “My cousin had CF but she passed away”. In sharing this, I wanted them to know that I am familiar with the disease and I was close to someone who had it. It was with complete positive intent that I shared this, so I am understanding when someone says it to me.

As Margo has gotten older, I find that I am less eager to willfully disclose that my daughter has CF. Perhaps it’s because I don’t know how people will respond and I have to be prepared for something that could be unintentionally hurtful, or I want to focus on sunnier subjects. My daughter is so much more than CF - let’s discuss one of those items instead.

I'm sick of hearing "I'm sorry"

The best response is neutral, kind, and curious: “How is she doing?” I feel genuinely appreciative when someone asks this question in response to learning about her CF, and I always try to employ it with others when learning about their medical circumstances, whatever the case may be. Because based on my own experience over the past four years, the last thing anyone wants to hear is “I’m sorry.”