How I Respond to Common Reactions About My Disease
Because I was diagnosed with a chronic illness at 28 years old, I have received many different reactions to the news. Most people are well-intentioned, some don’t know what to say, and others share common reactions that one might expect when something unfortunate happens. I experienced a lot of this when I was diagnosed with idiopathic pulmonary fibrosis (IPF) almost two years ago.
Thinking back to when I was first diagnosed, I proceeded with the news of my IPF in two opposite ways. I either chose to keep my diagnosis to myself and not share it at all, or I shared every detail, almost as if I were reciting a section of a medical journal that I had memorized. When I did the latter, it felt as though I was talking about someone else’s story, not mine.
Whether or not I chose to share news about my disease was one element of this new nightmare that I could control, so I clung to the freedom of either sharing my diagnosis in detail or not at all.
One thing I couldn’t control was how others responded, regardless of their intention. Some were emotional, others believed everything would be fine and wouldn’t accept the seriousness of my illness, and others were avoidant, ignoring my diagnosis completely.
Everyone is entitled to cope in their own way when faced with news of a difficult diagnosis, and I have realized that some people simply don’t know how to respond to a young person living with a terminal illness. It isn’t my job to manage how they cope or react to the knowledge that I have IPF, but it is my job to control how I respond to those reactions.
Following are some of the common reactions I receive from strangers, family, and friends about my illness and how I respond to those reactions:
- “I’m so sorry.” I get this a lot. It is a pretty standard response when someone is trying to empathize with you. People mean well when they say this, and usually, my response is something like, “I am sorry, too. I wish I didn’t have IPF.” I try to move the conversation forward and not sit too long in the space of being sorry and not being able to do anything about it. I usually launch into the unexpected gifts that my diagnosis has brought me. While I wish I never had IPF, in a way, I have learned a lot about life, myself, and those who love me that I would never have learned without my diagnosis. More on this in a future column.
- “This is so unfair.” The first thing I usually do in response to this is to agree. It isn’t fair that I fell ill with a lung disease so young, having never smoked a day in my life. While I agree with people when they say it isn’t fair, I try to move out of yet another conversation that isn’t going anywhere. What I usually talk about next is the classic cliché that life isn’t fair. I launch into other unfair things that happen in the world and say that I am not the only one experiencing something unfair.
- “Why you?” Usually, this comes the elaboration of, “Why not someone who deserves a terminal illness?” This implies someone has wronged a person with a disease or that the patient has done something widely harmful to society. Honestly, does anyone really deserve a terminal illness? Perhaps some might believe so, but I don’t think that I do. I am the first one to admit that I wish it wasn’t me who had this disease as well, but at the same time, why not me? No one should have to live with a disease that steals their breath away. I can’t wait for the day when research has found a cure so we live free of pulmonary fibrosis.
- “I wish it were me instead.” I try to redirect away from this reaction quickly, because I don’t think (or hope) that people really mean it, and I don’t want them to. I tell them that I am glad it’s not, and because it’s not, I advise them to try and make the best out of all their days here and really focus on living a quality life instead of focusing on quantity. After all, we never know when our stories will end.
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.