I’m Learning to Manage Unnecessary Feelings of Guilt
Today’s inspiration comes from a brainstorming session I had with fellow columnists. Speaking with other people who live with rare diseases made me think about what I wanted to express in my column. I realized I feel a lot of guilt, for several reasons.
Watching others struggle with PF
I feel guilty that my pulmonary fibrosis (PF) hasn’t progressed as much as it has in others. I’m grateful it was diagnosed early enough so that I could start treatment to help stabilize my condition and slow the progression.
Now, my disease is barely progressing, but I know others with PF who are having a tough time. I can go several weeks without my illness being a nuisance, but on the days I struggle, I really struggle. Exhaustion sets in, and my body just doesn’t want to move. My lungs feel heavy, and my oxygen levels drop dramatically. On the days I feel well, I do every activity I can, such as shopping, exercising, or enjoying a walk.
One of my many good days. (Courtesy of Ann Reynoso)
I sometimes feel like I don’t fit into the PF community because I don’t have enough experience yet. I was only diagnosed in December 2019, and most people I have spoken with have had their illness for much longer. However, I am grateful that they have accepted me as part of the family.
What I wouldn’t give for others to have the same stability I’ve experienced. Living with PF can be difficult and burdensome at times.
I continue to feel guilty for having more good days than bad. I have met many others with PF who can’t do half of the activities that I can. I hear stories about their relentless daily struggle with this illness.
I often ask myself, why must they struggle so? I wish I could give them some of my energy, just to help them get through the day. I wish others didn’t have to suffer the torment of this disease.
Feeling like a burden on my family
I belong to a PF support group, and we have lost many members to this illness. I have seen many family members respond to losing a loved one. Some channel their grief into sharing their experiences as a caregiver.
Hearing their perspectives has helped me a great deal, because another reason for my guilt is that my husband and daughter have become my caregivers.
Spending time with my husband, Tivo. (Courtesy of Ann Reynoso)
I don’t like the thought of being a burden. I have struggled so much with this guilt, but listening to PF caregivers struck a chord with me. For them, it was not a burden to care for someone with a rare illness. Instead, it was an honor to care for, love, and see that person through a difficult time in their life. It gave them purpose. I am so blessed to have the most wonderful support team, my family. Without them, I couldn’t find strength amid this illness.
My daughter, Jessyka, is always by my side. (Courtesy of Ann Reynoso)
Redirecting my energy
I have realized that my purpose in all of this is to give others with PF as much support as I can. I try to keep up with the friends I have made since my diagnosis. I check on them daily and give them the chance to vent about the frustrations of this illness. This, in turn, helps me to release the guilt I don’t need to be carrying.
We’re all in different stages of our illness, and a time will come when PF completely takes over my body. Until then, I will use my energy to make sure that others feel supported and loved. I have always empathized with others’ struggles and emotions, and it would be hard for me to part from that. My empathy and care are my superpowers. I will use them to help others as I learn to live with my disease.
I haven’t had much time to adjust to this new life, but I will keep learning and adapting as my disease progresses. As I grow, I will work on coping with this unnecessary guilt by maintaining a positive outlook.
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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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