What to Say When Your Friend's Child is Diagnosed with CF

Five years ago, when my daughter Caroline was two weeks old, she was diagnosed with cystic fibrosis (CF). Initially, we kept her diagnosis private, only telling close family members. This may seem an odd thing to do, but in many ways it gave us space and time to grieve. I worried that when we told those around us about her diagnosis we would begin hearing difficult or triggering things about CF, and I was right.

When she was a two months old, we began to share her diagnosis. Word began to spread and soon we were able to feel the warmth and support of our community. However, we also began to hear things that were not helpful and triggering to endure in conversation.

I know how difficult it can be to find words to comfort those close to you. I have been there myself, sitting across from a loved one who is grieving. We all ache to take the pain away from them and sometimes find ourselves scrambling for words or inadvertently making things about us.

In light of this, I want to share a few things from my own experience as a parent to a child with CF that were and were not helpful to hear during those first few months following her diagnosis.

What to say:

• I heard about Caroline’s diagnosis. I don’t know what to say. I am so sorry. How can I support you?
• Caroline is so loved and you are wonderful parents to her.
• Can I drop off a meal for you? I won’t stay to visit, just drop it off on your porch. I’d love to serve you in this way.
• Would it be helpful to talk about CF right now or would you prefer we talk about something else?
• I would really like to understand more about cystic fibrosis. Where can I learn about CF so I don’t need to ask you questions about it right now?
• Say nothing. Just hug them if they are in a moment of grief. don’t be afraid of silence. If you need something to say, remind them they are not alone and you are willing to walk beside them anyway you can.
• Could you tell me a bit about your day to day life with Caroline and CF? I would like to understand more when you're ready or have time.

What not to say:

I’ve actually heard all of these multiple times.

• I knew someone with CF, they passed away.
• I used to work with CF patients. It’s a horrible, devastating disease that takes over the entire body slowly.
• Take good care of her.
• Oh, I know all about CF.
• Have you considered a lung transplant for her?
• The life expectancy has come so far!
• I know how you feel.
• Have you considered essential oils or this herbal remedy?
• Any details about end stage CF. Even if you were an end stage CF nurse or doctor or specialist, never bring this up.
• Be mindful to not make the diagnosis about you. This not your opportunity to somehow relate it back to yourself. If you notice yourself starting to do this in a conversation with your loved one just pause, take a breath and ask the parent “How can I help support you and Caroline?”

A few things to keep in mind

No silver lining with a CF diagnosis

Comments that minimize the diagnosis or try to paint a silver lining around it such as "but there's so much research and new medication, things are so different now" or "the life expectancy has gotten so much better" were always hard for my husband and I to hear. I remember thinking, "I'm not sure I'm able to celebrate the fact my daughter's life expectancy is now 36 instead of 24." Those conversations are easier for me to have now but in the first year post-diagnosis those comments stung a bit. It felt invalidating of my grief.

Allow them To choose if they want to talk about CF

Having conversations about CF in-person those first few months after diagnosis can be extremely difficult for parents. If you run into them out at the grocery store or in church you can simply ask “How is Caroline doing?” This allows the parent to choose if they want to talk about CF or how they are doing outside of CF. This is a sensitive way of approaching the topic in person those first few months post-diagnosis.

When the shock wears off

The shock of a diagnosis will wear off to those around the family within a few months but this diagnosis is life-long. Your loved one is thinking about CF every single day and is learning to live with that grief for the rest of their life. Many people will rush to show support right away and then there will be a marked drop in those offering compassion or support after about six months to a year post-diagnosis. Make a point to check in on them intentionally several months after the diagnosis or even a few times a year.

Accept that there is nothing you can say to make this better for your loved one

Trust me, there have been times those I love have brought me words of great comfort, encouragement or peace. Words are truly powerful. Even still, there are no magic words that will cure CF. There is nothing you can say that will take the pain your loved one is experiencing away, and that's so hard to accept. The most meaningful thing you can do is respect your loved one's need to grieve.  Give them space and boundless compassion to do that. Continue to let them know you love them and are there to help support them and want to learn about CF alongside them.  It will take time but it’s your presence and support that will get them through the hardest days.