Sadly, many patients living with a life-threatening illness are likely familiar with a magnitude of feelings, fears, and emotions. There is no instruction manual on how to navigate life-threatening with a lung disease like idiopathic pulmonary fibrosis (IPF).
I’ll never forget when doctors told me that due to my age, they were uncertain about how this disease would progress. This was very unsettling, and I often thought, “If the doctors don’t know how to control my disease, how am I supposed to learn to live with it?” In hindsight, I’ve learned that everyone does their best to manage IPF, but sometimes, not even that is enough, which is scary.
Last August, I wrote a column that outlined many of my biggest fears as a patient living with IPF. While the fears I wrote about then are still relevant to my life nearly a year later, I’ve unfortunately added to the list as a result of experiencing more pain, physical decline, and the loss of people around me. I now realize that I am in a constant state of fear due to this disease, which is one of the agonizing mental aspects of having it.
In most of the columns I’ve written about coping, I’ve talked about the emotional and physical aspects of this disease. However, this is the first time I’ve really reflected on how IPF affects us mentally. There will always be curveballs to work around, and while I try not to let it consume me, the fear of “what if” or “what next” is never far from my mind.
After I was diagnosed with IPF in April 2016, I was told about the risks of having a lung disease and the steps I’d have to take to mitigate those risk as much as possible. I continue to have these discussions with my doctors, and the steps include doing my best to avoid people who are sick and getting enough rest to keep my immune system as strong as possible. Despite doing these things faithfully, something could still happen at any time to jeopardize my health. It is the unpredictability of this disease that scares me the most.
A number of events have happened in the last three years to cause this constant state of fear. In addition to those I wrote about previously, new fears include:
- Becoming critically ill again: In May 2017, I suddenly fell ill, and it was one of the scariest times of my life. Due to a respiratory virus, both my lungs collapsed, and the fear of this happening again sometimes cripples me. I avoid large crowds and people who I know are sick. This constant state of fear is mentally exhausting.
- Being found unresponsive: While this may sound dramatic, unfortunately, I experienced this with a friend who received a second lung transplant. He had been discharged from the hospital and was recovering at home, but his mom found him unresponsive on the floor of his room. This is one of my greatest fears, not only due to the impact on me but also on my family.
- The impact on my career and my finances: Long before I got sick, I was committed to lifelong learning, and as a result, I pursued higher education, receiving undergraduate and master’s degrees. I went into debt to obtain these degrees, but before IPF invaded my life, I believed I’d have my entire life to work and pay off the debt. My earning potential was higher than what I borrowed. While I am still working, it is a genuine fear that my debt will become unmanageable if I don’t continue to earn an income. It is becoming difficult to do this with IPF. This state of fear and worrying is mentally draining.
- Losing friends to IPF: This is a sad reality of living with any chronic illness, and it’s something I’ve already experienced several times. It never gets easier. I am in a constant state of fear about the intense heartache, grief, and pain that comes with the loss of another friend from this cruel disease. I know it is inevitable, but the fear of it happening again is exhausting.
What are some of your deepest fears as a patient living with IPF/PF?
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.