Advocacy and discussions about mental health on social media platforms feel very “trendy” at the moment. It’s a good thing — it is vital that we talk about mental health and raise awareness about the need to care for our minds as well as our bodies.
As a patient living with idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease, I would like to see more advocacy and discussions about caring for your mental health while living with a chronic illness. While I may often appear to be well, inside I am not coping.
Thankfully, most days are good rather than bad, and I use coping strategies on the difficult days. However, I admit that I still have a lot to learn when it comes to caring for my mental health. Sometimes the thought that most of my family members and friends will outlive me overwhelms me, and that adds to the grief over physical things I have lost over the years as my lungs decline.
The progression of this disease often feels out of control. I’m not used to this feeling of powerlessness. Before my IPF diagnosis, I had always been in control of my life and choices. But this disease is out of my control, and on days when I have the most uncertainty, my coping skills are severely lacking.
Some of my fellow BioNews columnists living with lung conditions have written about the movie “Five Feet Apart.” I’ve watched it a few more times since its release on DVD. I’ve found myself identifying with one of the lead characters, Stella, about her obsession with trying to control her disease and manage her medications. She puts a lot of pressure on herself and breaks down at various points in the movie. Her portrayal has illuminated my need for control over my disease. I ponder what I can control in a life that sometimes feels unpredictable.
My colleague Tré LaRosa wrote a column about learning to prioritize his mental health while working full time. He has helped me to realize that caring for my mental health is one thing I can take charge of. I have a choice about how I respond to requests and prioritize my days. Sometimes I get overwhelmed easily and am quick to react. While it’s not intentional, I think that my response comes from my awareness of the persistent threat to my health and erratic nature of this disease. I need to work harder at prioritizing my mental health and coping skills to allow myself to live more successfully with IPF.
Prioritizing where I invest my time and energy is an ongoing challenge for me. In January, I wrote about my New Year’s resolutions focusing on myself. I think I’ve recently lost sight of this when I became overwhelmed with everything that’s on my plate. Now it is time for me to revisit the importance of caring for my mental health.
While I have to learn this for myself, I hope that others will understand that though I appear to be well, it doesn’t mean I am coping with my disease. Aside from supplemental oxygen, much of the reality of living with IPF is invisible, including a patient’s ability to deal with the anguish of having a life-threatening illness.
Be kind to one another and gentle with yourself. Ask for help when you need it. Having any chronic illness is hard, and it’s easy to lose sight of prioritizing our mental health needs. While I appear well on the outside, I may be crumbling on the inside.
What are the resources you turn to for support when the ability to cope with IPF/PF seems to be out of control?
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.
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