My Latest Health Setback Left Me Feeling Overwhelmed with Guilt
You would be hard-pressed to find anyone who hates pulmonary fibrosis (PF) more than the patients living with it and their caregivers. This chronic and debilitating disease, characterized by progressive scarring in the lungs, is cruel and relentless.
PF affects much more than the ability to breathe — it also has a significant impact on the emotional and mental health of patients and their loved ones.
Before my diagnosis of idiopathic pulmonary fibrosis (IPF), I knew little of the emotional effects of chronic illness. It’s hard to summarize the feelings that come from being ill, from the losses you endure, and from the difficult experiences your loved ones face.
As readers will know, I am slowly recovering after several weeks of serious illness that required hospitalization and lifesaving interventions. My physical abilities have declined, and I need more help than before. I find the guilt associated with this to be overwhelming at times.
People have asked me why I feel guilty when I didn’t choose to become ill and I didn’t do anything wrong. The reality is that having IPF means being immunocompromised and more susceptible to catching viral and bacterial illnesses. Despite my best efforts, I ended up sick.
I strive to let go of guilt, but to do that, I need to understand why I feel guilty in the first place. Following are some of the reasons I have felt overwhelmed by guilt since my latest health setback:
- Increased caregiving needs: I hope that when I recover from this acute setback, I won’t need as much assistance as I do now. I know there is a chance my lungs will not regain their function, and I will remain dependent on others. Hopefully, I’ll eventually recover some of my independence. Family members have given their time as well as their physical and emotional energy to help me. I find it hard to avoid feeling guilty about the burden I have placed on them.
- Financial dependence: Living with a chronic illness has many financial implications. Medical and other costs add up. Health setbacks and acute illness can prevent us from working to earn a living. We might have to rely on our parents or others to help us out financially. Sometimes that assistance feels undeserved or inappropriate, even when we offer skills or services in exchange for their help.
- Emotional outbursts: Unfortunately, no rulebook exists to teach us how to live with a fatal illness. Sometimes trying to cope with the challenges becomes overwhelming. I’ve lost count of the number of times I’ve said something I didn’t mean because I was emotionally exhausted or anxious about something related to my disease. In those moments, I don’t recognize how my words could be hurtful to others, but afterward, I experience remorse about my anger. My emotional outbursts can also be due to “steroid rage.” Regardless of the reasons, patients still feel guilty.
- Exhaustion that hinders social activities: Have you ever been so exhausted that you’ve dozed off during an important meeting? This often happens to patients living with IPF due to physical or mental exhaustion. Nodding off at the wrong time is embarrassing and leaves you feeling guilty.
- Being immunocompromised: Due to my intense fear of getting sick again, I’ve taken what some might perceive as extreme precautions to avoid others during cold and flu season. Sometimes this means missing out on social activities or celebrations altogether. Other times, it means asking those who are sick to avoid coming to work or to events to reduce germ exposure. I have a lot of guilt due to being immunocompromised, especially when I have to ask others to refrain from doing things due to my medical needs.
What do you feel guilty about as a patient with IPF/PF? Please share in the comments below.
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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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Nan Martin
Charlene, thank you so much for being open and honest. You write so beautifully and raw and I so appreciate it. I can totally relate to the guilt, although it is false guilt nevertheless it is a real feeling. I don't know what else to say accept allowing people to help you is giving them a gift. It may not feel that way but it is true.
All the best.
Charlene Marshall
Hi Nan,
Thanks so much for reading my columns, and getting in touch via the comments. As always, it is wonderful to hear from you! I wrote you back on the PF News forums, but I do want to say thank you again for your kind words on my column. Stay safe in this snow storm we're getting today! Hugs, Char.
Rob
Hello Charlene
I’m so sorry to hear you’ve not been well. I don’t comment frequently but often read your great posts. IPF sucks on so many levels and is difficult on the everyone in your life. I’m lucky to have great support from family, friends and doctors(Firestone Clinic).
I’m was diagnosed with IPF over 3 years ago but am lucky to still live an active life?. Most people will never realize what you’re going through. How many times do you have to tell people to cancel if they have a cold or forget that I don’t shake hands anymore. I’m sure you have tons of info but(at the risk of mansplaning) here’s what works for me.
Zinc, Vit C, Vit D and oregano oil capsules for immunity. I use a device called an Airtamer(Amazon) when in public. It’s supposed to repel germs and I believe it works. I carry an individually wrapped medical mask and put it on if someone is coughing in a train, theatre...
I inhale Acetylcysteine liquid by nebulizer twice a day which has greatly reduced phlegm in my lungs. I try to exercise as much as possible. If you’restanding still you’re going backwards.
I know someone with IPF that got new lungs on Christmas Eve and is doing well?.
Thanks for your frequent support on this site.
Be well!
Rob
Charlene Marshall
Hi Rob,
Thank you so much for reading my columns and getting in touch via the comments! I really appreciate everyone's kind words, and am always thrilled to hear that patients (like you've said) have a great support system in place. Firestone Chect Clinic, is that at Mac? If so, yes, they are brilliant! I almost went there for my own diagnosis! Really happy to hear you're maintaining an active lifestyle three years post-diagnosis - we must have been diagnosed around the same time.
Thank you for sharing the immune strengthening tips that work well for you! I take many of the same things as you, especially the Zinc and Vit C. I'm actually on a prescription dose of Vitamin D too. I will check out the Airtamer you mentioned too, great idea, thank you for sharing. I'll check the nebulizer too because keeping my lungs clear of any phlegm will help in my recovery from this latest setback too. Many thanks for all of your thoughts, and sharing :)
Stay well,
Charlene.
Cindy Kee
I was diagnosed in December I have dealt with many different illnesses but having being told 3-5 years life expectancy but i have been reading all i can get
Charlene Marshall
Hi Cindy,
Thanks so much for reading my columns and getting in touch via the comments. Sorry to hear you're also dealing with this cruel disease, and of your diagnosis in December. Reading/educating yourself is important I agree, but please ensure you're using a credible online source. It can be a really scary disease to read about but a lot of the information online is indeed outdated (ie. the prognosis of 3-5 years). I know lots of people who have lived far beyond that statistic. If you haven't found the forums yet, I'd highly encourage you to join us there. It is a wonderful community filled with support and information, you can join for free here: http://pulmonaryfibrosisnews.com/forums/
Feel free to write any time Cindy.
Kind regards,
Charlene.
Kate
Charlene, on this snowy morning in Wisconsin, I simply want to say thank you for writing this. Thank you for your honesty and your clarity. What you wrote about emotional outbursts was just what I needed to hear in this moment, and I hope that we can all find the compassion for ourselves that we need as we sometimes stumble down this uncharted path that we've found ourselves on. And beyond that, please know that you have all of my best wishes beaming to you, that your health will fully recover from this setback. You give so much to all of us, Charlene. May you be well, dear one.
Charlene Marshall
Hi Kate,
Thank you so much for reading my columns and for connecting via the comments - reading your reply and kind words really lifted my spirits on this snowy Canadian morning! Though sharing our story takes vulnerability, I am so pleased to be able to do it, especially when some of the content resonates with others. Sorry to hear you can relate to the emotional outbursts - they are awful, aren't they? Giving ourselves some grace and compassion is so important, I agree. Thank you for the reminder about how important that is and wishing you nothing but the very best as well. Thank you again for brightening my day!
Charlene.
Ted Fecteau
Charlene, thanks for your honesty in your articles. Making yourself vulnerable is what allows us to relate to you and feel we are not alone on this unchosen path we share. Kim Fredrickson continually urged us all to be gentle with ourselves and to show the compassion to ourselves that we often feel for others. We would cease to be human if we suppressed all our emotions. Best wishes coming your way from down under for your recovery. As long as you are still thinking and feeling, you can be kind to yourself.
Charlene Marshall
Hi Ted,
Thank you so much for reading my columns and for getting in touch via the comments. I so appreciate hearing from others, and while being vulnerable is difficult; it is worth it when others can relate to your experiences and find comfort in that. I like how you phrased that, "this unchosen path we share", thank you for titling it something that I couldn't agree with more! You're very right re: Kim's teachings - I miss her so much, and I know many others in this community do too. Her reminder is always with me, though I sometimes forget it and thank you for bringing it up. Best wishes to you, and thank you again for your kind comments.
Sincerely,
Charlene.
jaime l manriquez
Charlene, after reading you column, "feeling guilt" I agree with you, because you age, but since I was diagnose IPF 2012, I take the life differently, if you want the advice of this old man (71)
I put IPF behind, I do everything I wanted to, live a normal life,eating normal, no dieting, doing things I enjoy, taking it easy, resting a lot, the only thing I take serious is not exherting myselt, if I go uptstairs seat and rest a minute and then continue doing what I went up for, and the same for everything I do physically. Best regards , Jime
Charlene Marshall
Such great tips Jaime, thank you for sharing! You're right, it is important to put IPF behind us and really live with this dreaded lung disease. Hopefully this helps with your mental and emotional health as much as your physical health. Thank you so much for sharing :)
Marilyn Mott
Hi Charlene,
Although I am older, I was an extremely healthy, active individual when I was diagnosed in June 2018 with IPF. I had no knowledge about the disease. My sister was diagnosed a month earlier. I read about the disease and thought that I would be on the high side of the prognosis. In December I had shortness of breath and chest pain which sent me to the ER. After multiple tests and an MRI, I was given an IV of prednisone and allowed to go home. It was my birthday. Two weeks later my chest doctor put me on 2/5 liters of oxygen. In March, I was admitted to the hospital by my regular physician for chest congestion. While there, I had an exacerbation where I watched my stats drop to 52. I was admitted to ICU, where I was not expected to live. In April I was sent home on hospice with medications that saved my life. I had to hire a sitter service 24/7 since my husband had Alzheimer’s. Did I feel guilty that I was using all the resources that we had saved to enjoy our retirement when I had no quality of life? I was bedridden.
Fast forward to now, 2020. In December 2019, I had my 80th birthday. I am doing simple cooking, walking to the bathroom, knitting, paying my own bills, and reduced my caregivers to Monday-Thursday 9-4.
The support from family and friends has been phenomenal. I am thankful for each one. Yes, I do feel guilty sometimes that I had not done more for others while I could.
My sister has begun to have the shortness of breath and feeling tired, but is not on oxygen yet, and she is still very active. More later.
Charlene Marshall
Hi Marilyn,
Thanks so much for reading my columns and reaching out via the comments. Really sorry to hear that both you and your sister are now dealing with this cruel lung disease! Gosh is sounds like your illness trajectory is so unfair, I'm so sorry you had those struggles but glad to hear you seem to be on the incline end of things now. I'm really happy you've seemingly regained some strength and independence, that is wonderful. So important to have good friends and family members surrounding you, it sounds like a great groups is in your circle. I hope your sister does okay with her disease progression too. Keep active - that is very important! Thanks for writing and sharing some of your story.
Charlene.
Marilyn Mott
Charlene,
I have read your posts for a while before I joined the group. I have appreciated your level headed advice. The rest of my story is harder for me than my IPF. My husband has had Alzheimer’s for six years and I was actively working with a nutritional physician with blood tests to bring his vitamin and mineral levels to optimal. His cognitive scores had risen by 3 points out of 30. While I was in the hospital, all of this went by the wayside. Basically I am his caregiver, so I don’t have time to be sick. The hardest part for me is the frustration that he can’t remember normal short term things anymore. I know that he can’t help it, but it is so hard to not react negatively to it.
I had shingles in my left arm and hand with residual numb and painful three fingers. Hospice treated the shingles pain with Gabapentin which had the wonderful side effect of helping my cough, I later read on the forum that others had been prescribed Gabapentin for cough. I hoped to contact them to learn the dosage that they were taking.
During the month of December, my husband had a kidney stone that he was sent home to pass it since it was in a bad position. While trying to pass the stone, he had a mild heart attack. So I lost my hands and feet since his heart was now at 35% and he could no longer drive locally. Thankfully he passed the stone and is gaining strength, but his cognitive skills had decreased.
BTW my oxygen is 8 liter resting and 12+ when up. My levels can go from 98% to 79% just walking 30 feet. I haven’t been out of the house since March 2019. I wish that we had access to liquid oxygen.
Hope that this has not sounded bitter. I am okay with my condition. I know that God is in control. I just hope that I am always kind.
Best wishes for your health.
Charlene Marshall
Hi Marilyn,
Thanks so much for reading my columns and getting in touch via the comments. Even more than that, thank you for being vulnerable and sharing a bit of both yours and your husband's story. I'm so sorry you're both dealing with a chronic illness - that seems really unfair! Please be gentle with yourself and give yourself some grace when it comes to reacting based on your husband's decline. I can't imagine how difficult that is, and I've written about this before too: I think IPF can make us a little more emotionally irritable, so I am sure the reactions and partly due to this cruel disease. Hang in there and feel free to write us any time: the PF News forums are also filled with amazing tips of information (ie. gabapentin helping with the IPF cough) so join us there for conversation, or a listening ear, anytime!
Kind regards,
Charlene.