Emotions resurface when a loved one receives an IPF diagnosis
This news can stir up grief, anger, and other complex feelings
Since my diagnosis of idiopathic pulmonary fibrosis (IPF) in 2016, I’ve learned to manage my emotions about my illness. However, there are a few circumstances that make it nearly impossible for me to control how I feel, often causing me to erupt with rage and anger.
One of those circumstances is when someone I love is diagnosed with IPF.
On one hand, it irritates me that the National Organization for Rare Disorders classifies IPF as a rare disease. A condition is considered rare if it affects fewer than 1 in 2,000 people. IPF certainly feels more prevalent in my world, especially when a loved one is diagnosed.
In the early days of my diagnosis, I didn’t know anyone with a life-threatening lung disease. But the more I shared about my condition, the more people would tell me about someone they knew who struggled with similar symptoms, such as breathlessness, dry cough, and fatigue. That reinforces my sense that IPF isn’t as rare as people think.
On the other hand, my heart hurts when someone I love is diagnosed with this condition. Not only does it threaten their life, but it can also make even the simplest daily tasks difficult. I feel emotional because this person’s life will be forever changed, just as mine was eight years ago.
I was initially naive about what it meant to have a fatal lung disease. That was partly because the pulmonologist who diagnosed me acknowledged that he didn’t know how IPF would progress in a 20-something young adult. It wasn’t until I landed in the intensive care unit (ICU) with a respiratory virus that I realized how serious IPF was.
Following that experience, I was plagued with numerous emotions that took me years to work through. Following are the ones that resurface for me whenever a loved one receives an IPF diagnosis:
Grief
Many people associate grief with death, but it can show up for many other reasons. Before my diagnosis, I was active in sports and enjoyed a full social life, but once I was no longer able to keep up with my peers, I lost the camaraderie of being part of a team.
That loss hit me hard. With professional support, I realized I was grieving the abilities I had before I got sick. When someone I love is diagnosed with IPF, I wonder which parts of their life they’ll grieve, as this disease will inevitably steal things from them.
Anger
For months after my ICU stay, I wrestled with the question, “Why me?” I was so angry to be diagnosed with IPF, despite having no familial history of lung disease.
While no one could answer that question, unfortunately, those closest to me had to bear witness to my anger. It took me a long time to accept that I couldn’t control this illness, but I could control how I responded to it and lived my life.
Confusion
Myriad appointments, tests, medications, and specialists follow a rare disease diagnosis, and the quantity of visits and information can be overwhelming and confusing. The best advice I received following my diagnosis was to have someone with me during appointments to be a second set of ears and help decipher everything that was said.
Sadness
I went through a phase of deep sadness, possibly depression, following my diagnosis, and again when it finally sunk in how debilitating IPF was. I worry about those who are newly diagnosed and hope they have a strong support system to help them navigate the emotions that can accompany this kind of news. Without that support system, I’m not sure I would’ve made it out of my sadness.
How do you navigate your emotions when someone you love is diagnosed with IPF? Please share in the comments below.
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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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