Since being diagnosed with idiopathic pulmonary fibrosis (IPF), I have crossed paths with many different people with varying responses to my disease. Because I am only 29, I am regularly reminded that being diagnosed with this disease so young is rare and, as a result, people are often unsure what to say to me or how to respond when I tell them why I use supplemental oxygen.
These many different responses from people learning about my disease cause a range of emotions. Some swerve from anger to sadness, but there’s also laughter and humor. It does take some time to get used to the responses of people just learning a young adult has a life-threatening illness. But the nice thing is you are the one who chooses how these affect you. You can either hang on to them and let people’s uncertainty and often unintentionally hurtful comments get to you, or you can shrug them off and chalk them up to not knowing what else to say. This is true not only in response to people learning about your disease, but also to statements they may make about how you look or when they are trying to relate to you.
I have been thinking about the comments I receive on a regular basis, and wanted to see if any of you can relate to the things people say when it comes to your illness. Particular comments that happen regularly, thankfully, I can laugh them off and I understand that they are well-intended.
Comments I hear mostly from people who know me well, and aren’t afraid to be honest with me, are about the color or lack of color in my face. It is not unusual for people to comment on how blue or gray my lips are at times, or for them to tell me I look pale or have no color in my cheeks. On the flip side, the people who are closest to me also like to joke when I am having a pink day, meaning I do have color in my lips and face. Because it is not frequent anymore, it usually prompts comments.
I have heard from other friends, who have had lung transplants, that the first time they look at themselves in the mirror post-transplant, they think special lighting is giving them extra color in their lips, cheeks and face. The first time I heard this, it made me laugh because it is not something I would have ever thought about. But I suppose with healthy lungs, oxygenation is much improved and color would be restored. I don’t even think twice about it anymore when people comment on my color (or lack thereof); I just giggle and respond with something sarcastic about being blue, gray or pale-looking. This often makes them laugh, too!
For those of you living with IPF, I am sure you hear often: “you look exhausted.” I hear this often, and at first it used to bother me, because I thought it was people telling me how terrible I looked. But the reality is that I do look exhausted, because I am. My disease makes me tired and that is just the way it is. People don’t make this comment to make me feel bad, so I don’t anymore. Instead, I use it as an opportunity to educate people on how exhausting IPF is and being chronically under-oxygenated really is difficult.
The comment that makes me chuckle the most comes from people’s well-intended, but awkward, attempt to relate what I have to something they have been through. People often say to me, “Oh I know what you are going through, I had bronchitis once.” I am not kidding; it happens often! This used to frustrate me, but the more I thought about it, it is human nature to want to try to relate to people. If this is what makes them feel connected to my story of living with a chronic illness at 29, then so be it. Plus, in the acute phase of their bronchitis, they likely could relate to me in the sense that they somewhat understand the difficulty of struggling to breathe. IPF and bronchitis are very different, but the desire to connect with me is admirable, so I usually have an internal chuckle and carry on with the conversation.
These are just some of the comments I hear that I choose to respond to with humor and laughter. I could write all day about others. Do you have any to share?
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.