At some point in every person’s life, death becomes part of their story. The unexpected death of a family member or friend is traumatizing. You wake up in a world of grief and confusion, which you must confront and reconcile over and over again. There is no easy way to get through that kind of senseless loss.
There is a different kind of confusion and pain in knowing that death is waiting to claim someone you love. The grieving process starts as soon as you hear the words of a terminal diagnosis. You get to experience the beautiful trauma of grieving with the person you are going to lose. It’s hard, but it can help provide closure as you transition into the realm of “after.”
A diagnosis of pulmonary fibrosis gives you a different scenario: You have to process the possibility of death while also processing the possibility of life. When my mom was admitted to the ICU, she was the kind of sick that seemed almost insurmountable. My brain wanted me to grieve as I sat beside her during the first few weeks in ICU until she recovered enough to get on the transplant list. With advanced IPF, a lung transplant is an almost supernatural beacon of hope that makes the word “terminal” not so, well, terminal.
Although I didn’t truly know what the prognosis was until my mom was en route to University of California San Francisco, I and everyone else who knew my mom knew that she didn’t just have a cold. Breathlessness, chronic cough, and sudden weight loss are not exactly evidence of good health.
Being asked about my mom’s health when I really didn’t have any answers made me uncomfortable. The worried looks of friends and family caused icy spikes of anxiety. “Is your mom OK?” my sister-in-law asked as my mom napped on the filthy turf at our alumni rugby game. “She didn’t seem that sick a few months ago.”
I thought, “I know. The portable oxygen is new, the fatigue is worse, she’s lost 30 pounds. I want to throw up.”
I said, “She’s fine. I’ll tell you about it later. Let’s go get some pizza.”
During the trip home, we stayed with one of my mom’s co-workers. “How have you been since you moved?” quickly transitioned to, “So, is your mom going to need a lung transplant? She seems pretty sick.”
I thought, “The weather in Washington is gray most of the time, the traffic sucks, and yeah, that cough might eventually take her life, thanks for asking. Where’s the bathroom?”
I said, “We don’t really know yet. How have you been?”
I know that questions like these always come from a place of care and concern. People ask them because they want to understand and help you cope. Logically, I know that, but sometimes they come out wrong, or at a bad time or place. Nothing ruins a nice night out with friends quite like the question, “Tell me, exactly how worried are you about losing your mother?”
The painful truth about this illness is that it is unpredictable. Its progression can be forestalled for years or it can suddenly take a turn for the worse. The uncertainty makes it very difficult to talk about. If you are a patient or a family member walking the PF path, know that it’s OK to have no idea what to say or even feel.
Even when questions came from a place of love, it always felt awkward to be asked about my mom’s illness. I never really wanted to say that I was terrified and I had no idea what was going to happen. I struggled for words until I had answered those questions enough times to have an automated response at the ready.
Prepackaged language allowed me to deflect people’s inquiries without getting too emotional. I’d say, “She’s sick, but she’s got some great doctors who are trying to figure it out” or “She’s taking new medications and making some lifestyle changes.”
What I would rather have heard in almost every one of those instances is something like, “I noticed/heard that your mom is not doing very well. I really want to help you through it, if you ever feel up to sharing.” Several people did approach me this way, and I felt so utterly relieved and supported when they did. Whether or not I did share with them, I knew that they cared, and I didn’t feel pressured to explain anything.
If you found my column because someone you know has pulmonary fibrosis, here is my advice on how to talk to them or their family about it: Curiosity can feel uncaring. A supportive statement always feels less invasive than even the most well-intended question.
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.