Talking to family and friends about your fibrotic lung disease can be frustrating. Pulmonary fibrosis and interstitial lung disease are rare and are not well-publicized, so many people have never heard of it. What do you tell your friends and family about your health? Here are a few things I’ve learned about how to talk to others about your condition.
1. Think about how much you want to share before you speak.
Your health information is private. It is up to you to decide what you want to share and what to keep to yourself. Strangers and acquaintances do not need to know your personal business. But family, close friends, and spiritual advisors can be a valuable source of support. Before I talk to people about my health, I ask myself, what do I want them to know? What do they need to know? You can share as much or as little as you decide.
2. Save the details for second or third conversations.
Because so few people know what fibrotic lung disease is, I generally assume that they know nothing about it. After the initial diagnosis, my comments were very general because I was learning myself what it meant. Right after diagnosis, my comments were general “I’ve had a change in my health this year, I have been diagnosed with a chronic lung condition and I don’t yet know exactly what it means for me.” Later, my update to the same friends became more detailed. “My disease has damaged part of my lungs and that damage will never heal, but I am taking treatments that may slow further damage.” Only my close family knows more, and with them, this is not just one conversation, but many.
3. Explain simply what fibrotic lung disease is and what it means for you.
Sometimes people want to know about your disease. I try to explain it very simply. Something like this: “your lungs are filled with little sacs, like balloons. When you breath, the air goes into the sac and the membrane extracts the oxygen and sends it through your body. In my case, something has caused the membrane to develop scar tissue, so the balloon membrane is stiff. This makes it harder to extract oxygen, so I’m in danger of not getting enough oxygen, especially when I exercise.”
4. Set boundaries for your yourself and keep repeating them.
People seem to forget what I’ve told them. I have to set boundaries over and over. I tell myself it is not on purpose, but just because they don’t experience my condition all the time. It works best for me to be specific about what I will and will not do. For example: “We’d love to visit your lake house, but I don’t hike anymore—we’ll wait for you at the end of the trail.” By saying no to one thing and offering something else, I usually get cooperation.
5. Ask for what you need, indirectly or directly.
I have success when I give people ideas about how they can help. Sometimes all it takes are hints: I mentioned to a friend that repairing the garden gate was too hard for me. He came over with his tools and a couple hours later, the job was done. Other times, I have had to be more direct. “It’s getting difficult for me to lift anything heavy. Could you help by taking out the garbage?” Asking for help may be hard. We don’t like to inconvenience other people. But in truth, most people are glad to help. People you don’t expect to help you may be the ones who help the most. Accept help graciously and with a thank you.