Voicing Vulnerability: What I’m Scared of as a PF Patient
As a patient living with idiopathic pulmonary fibrosis (IPF), there are many things I am scared of. However, part of me believes that it is my responsibility to show resilience, bravery and “no-fear” around those who love me most, such as my friends and family members in order to protect them from the cruel realities of IPF. Secretly, I think they know how this life-threatening lung disease is going to affect my future, but if I don’t voice fear or concern surrounding that, then it is a topic that goes unaddressed which makes everyone feel better.
Is this the best approach to coping with my fatal lung disease? Probably not. And, just because I show the side of me that isn’t scared of my disease, doesn’t mean that I’m not petrified of certain things that are related to my illness. I am, and I am thankful to have this platform to “voice” (ie. write) them down on, while being among an audience who truly understands the fear of living with IPF.
There is a lot of vulnerability that comes with voicing my fears about my illness, however, there is also a lot of strength, inspiration and comfort that others can draw from being authentic about your fears. Living with a life-threatening illness is scary, and there is no shame in admitting that.
Unfortunately I am well aware of the reality that this disease is likely going to end my life far sooner than I would die without a chronic illness. While I try to push that aside, and focus each day on living as best I can with the time I have, sometimes we need to address the very real fears that bottle up inside of us. As a young adult living with IPF, here are some of the things I am scared of as a result of my disease:
- My impending death: even post lung transplant, there are complications and infections that often cause patients to experience a premature death. There are lots of people who get many good years with their illness, and post-transplant but the harsh and scary reality is that most don’t. Here’s the thing: I’m really not afraid of dying. Everyone is going to die; it is part of the great circle of life. I am however, scared of dying from this disease. I’ve heard far too many horror stories of people losing their life to IPF and what their final moments are like when they cannot breathe. This is what I don’t want to experience, and am terrified of.
- The uncertainty of my future: living with a chronic illness makes everything seem so uncertain. Do we plan a wedding? Start a family? Spend my ‘healthy’ days travelling and seeing the world? These are all things that someone who is healthy wouldn’t have to question and they could just build into their adult lives. However, living with a chronic illness changes that and the uncertainty can be really scary, especially when you don’t know what each year will bring
- Leaving my dog behind: I can’t elaborate on this too much without crying because this is one of my biggest fears. I don’t ever want her to wonder where I’ve gone, or be sad that I’ve purposely left her. My golden retriever is my world, and one of my greatest fears is her feeling like I abandoned her.
What are some things you are scared of as a result of your IPF/PF diagnosis? If you feel this is a safe space to share your fears, then I’d invite you to let us know.
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