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What I Need From Others as a Patient with IPF
Back in October of 2017 I wrote a column about how the question, “how are you doing” is sometimes an emotional trigger for me. This is because it is one that I am asked often since my diagnosis of idiopathic pulmonary fibrosis (IPF) in April 2016, although I am unsure just how many people want my real answer to this question. Sometimes it feels as though people ask this question more to be socially polite in conversations, as opposed to authentically wondering how I am managing my life with a chronic lung disease. Since I feel this way, there is often an internal dialogue I play in my mind before I respond to the question about how I am doing and you can read about that dialogue in the link to my column above.
This same dialogue occurs in response to the question, “what do you need?”, which is another one I get asked about often since I was diagnosed with IPF. The truth is, sometimes I don’t know what I need from others as I learn to live with IPF, but that uncertainty doesn’t mean I don’t need things from others. It just means that in the moment, I’m not sure how others can help but in reality, there are a lot of ways others can help any of us living with a chronic illness, including IPF. Here are some of the things I need from others as I live with my life-threatening lung disease:
- For people to check-in, often: everyone is busy and I understand that but it is so nice to receive a sporadic text or phone call to check-in with how I am doing. While I consider myself lucky to never really have dealt with anxiety, this is something that is creeping into my life more frequently. My anxiety tells me that due to my illness, the people I love and care most about might leave as I get sicker. Checking in with me often helps alleviate that anxiety for me.
- Encouragement: some days living with IPF is really difficult, and I am often emotional in response to these difficult days. Your encouragement in the form of verbally helping me through it, physically doing something to distract me or simply letting me vent through the emotional difficulties of this disease is extremely appreciated. Encouragement costs nothing and it is something we can all do for one another.
- Think of ways you can help me: put yourself in my shoes, and ask what you’d like or want from a friend or family member if you were living with a life-threatening illness. What would make your day/week a little easier? What might make you smile, or feel happier? Creatively thinking about how you can help me occasionally alleviates the pressure I sometimes feel in coming up with an answer for what you can do for me.
- An authentic interest in how I am doing: when you ask the infamous question, “how are you doing”, please show a genuine interest in my answer.
What are some of the things you need from others since being diagnosed with IPF/PF?
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