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.
About the Author
Comments
Lori Ward
Thank you for sharing this message about your journey. I, too, was diagnosed early and am on OFEV to slow my progression so I don't have daily struggles yet and am also glad this community has welcomed everyone no matter where they are on their journey. Since I look good on the outside, I am not getting any help offered from my husband or children yet. Even though I am not on oxygen yet, I have bad days. My problem is that I have also struggled with fibromyalgia for over 20 years and I can't tell if I am having a flare up of fibromyalgia or IPF. I have been walking 2-3 miles every day most of the summer, but the past 3 weeks I can hardly get off of the couch. I wonder what is causing that, fibromyalgia or IPF? I want to be able to make a nice Thanksgiving dinner for our family but I'm afraid all the house cleaning and preparations will cause a flare up. I'm considering looking into palliative care to see if I qualify to get some help around the house, but I feel guilty since I'm not really 'that sick' yet. But from what others have written, we are advised to live the life we have left to the fullest, doing the things we love. So if I love to cook a turkey dinner and have my family over, I feel like I should be able to ask for help beforehand so I'm not overdoing it. Is that selfish or taking advantage of palliative care? I just thought I'd see what others thought. I know my kids will step up when I am bed-ridden, but don't want to ask them for help now when they have young children at home. This disease is a struggle for sure! I said a prayer that you will keep maintaining your health level for years to come! God bless, Lori
Ann Reynoso
Thank you Lori for reading my column and especially for sharing your story. I know those feelings of guilt all too well. I have been on oxygen since 2020. There are few days that I can be without it, but if I do any type of activity, then my oxygen goes back on. I hate having to ask for help from my husband or daughter but there are times that I just do not have the energy or strength to do certain things. Have you noticed if breathing or catching your breath is a hard thing for you? If so, you may want to bring this up to your pulmonologist. They will decide if it may be time for oxygen therapy. In the meantime, please continue to check on your oxygen levels with an oximeter. Speak with your physician and explain your daily struggles. This will help them determine if palliative care is needed. Please do not feel guilty if it is warranted. This disease is a constant and daily struggle. I know Thanksgiving is around the corner and I too love cooking this special dinner, but it does take a lot out of you. Maybe you could have your children bring the side dishes and this way you only have to concentrate on the main course. For help on cleaning, you could make a game out of that with the grandchildren if they are old enough. They could help clean and have fun doing it. My thoughts and prayers go out to you and your family as you maintain your health. I am including a link that I feel may be good to read together with your spouse and children. I hope this will help everyone to understand the progression of this disease. It is important to have a strong and healthy support team. https://www.ofev.com/static/images/PDFs/PC-US-113083%20Caregiver%20Brochure%20-%20PDF%20for%20Web.pdf