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  • How I Respond to Common Reactions About My Disease

    Posted by Charlene Marshall on May 16, 2018 at 6:28 am

    As a young adult living with a life-threatening illness such as idiopathic pulmonary fibrosis (IPF); it is not uncommon that people aren’t sure what to say to me in response to knowing why I use supplemental oxygen. Despite their intentions being good, sometimes people respond to the news of my disease in very unhelpful ways.

    Unfortunately, I cannot control how others react when I tell them about my fatal lung disease. However, what I can control is my response to their comments and reactions, while using it as an opportunity to educate others about IPF.

    How do you respond to common reactions from others about your disease? In my column below are the top 4 reactions people say to me when I tell them I am living with IPF, and how I choose to respond.
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    – “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.

    The full column can be found here: https://pulmonaryfibrosisnews.com/2018/04/05/ipf-how-i-respond-common-reactions-about-my-disease/

     

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