Letting Go of Guilt as a Patient with Pulmonary Fibrosis
Any chronic illness diagnosis is scary and confusing. It is a time filled with an abundance of emotions that are difficult to navigate. Unfortunately, these emotions don’t exist only for the first few months after a diagnosis, but rather they remain ever-present as a patient learns to live with their disease.
Since my own idiopathic pulmonary fibrosis (IPF) diagnosis in early 2016, I have experienced many emotions as I learn to accept my fate as a patient with a life-threatening lung disease. Sometimes these emotions are internal and no one really knows I am processing them. Other times, they are expressed as emotional outbursts, combative comments, or arguments that really are unnecessary. I only recently learned that anxiety can present itself as fear and anger instead of worry and overanalysis, which is how many people perceive what anxiety might look like in others.
One of the most difficult emotions I have had to navigate since my diagnosis is guilt. At times, guilt has completely consumed me, preventing me from enjoying all the good in my life, which still exists in abundance despite having a chronic illness.
Following are some of the reasons I feel guilty as a result of my IPF diagnosis, but believe me, there are many more:
- I feel guilty for taking others’ time. Sometimes I feel so unwell that I physically need help from others. Other times, I need emotional support when I am processing difficult news. This also consumes other people’s time.
- I feel guilty that I can’t always reciprocate the help that I receive. Friendships ebb and flow naturally, and sometimes the scale is tipped a bit heavier for what I need compared with what I can give as a result of my illness.
- I feel guilty for canceling plans at the last minute. My illness needs to take priority, and if I am feeling unwell, I need to cancel social plans.
- I feel guilty that I can’t always verbalize how I feel. As a result of this, sometimes I am a little more difficult to deal with than I’d like to be. For example, I can be overly emotional or sensitive.
- I feel guilty that I require more accommodation and flexibility at work than my colleagues do. This is pretty self-explanatory, and I would do anything not to require these accommodations if it meant I was healthy.
These are just some of the most common reasons I have felt guilty since my IPF diagnosis, and I have been seeking methods for letting the guilt go.
As a result of a recent disagreement with a friend, and after spending a lot of time evaluating and reflecting on what was said, I have created an unexpected gift for myself. I have chosen to prioritize my own needs before the needs of others. I have been intentionally focused on not feeling guilty about this.
I used to verbalize this all the time and talk about how I wouldn’t feel guilty for putting my health above everything else. But I can’t say that before now I really practiced what I preached. If I said no to someone who needed something from me, I would feel guilty even though I promised myself I wouldn’t. Actually, most of the time I wouldn’t say no to others, and that has recently changed.
Now I am actively practicing not feeling guilty when I need or want to do something for myself, and I will say no to others. I also have spent some time compiling things that bring me joy that do not involve others, such as crafting, reading, and spending quiet time at home with my dog. I am focused on doing more of these things, and this has been incredibly liberating.
I feel more at peace with myself than I have in a long time, and it seems that if I don’t rely on others or have expectations of them, I am in a better position not to be disappointed. This has been a steep learning curve, and unfortunately, it has been illuminated as a result of a disagreement with a friend. But I think this was timely, and I needed to learn this lesson now.
Do you experience guilt because of your IPF/PF? Why? How do you release that guilt? Continue this discussion in our PF forums.
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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
Chuck Harrison
My list just about the same ( except work ) my biggest problem seems to be pride . I used to do so much around the house , gardening lawn care ect. Now my limitations have come into play , guilt and pride have drove me to be a person who apologizing for everything , sorry hon , can you get me a glass of ice water ? Sorry I just don't have the energy right now to cut and weed whack the lawn , I'm going to bed for awhile I'm exhausted sorry . At no time does she refuse to pick up the slack ! We live in the middle of Amish country here in the southern tier of New York State , and there are times when I just can't lift something or do something and it's bothersome to see a man doing what I should do ( prideful ) and to be honest I can't get rid of these feelings !
Charlene Marshall
Hi Chuck,
Thanks so much for reading my columns and getting in touch. As always, it is great to hear from you!
Sorry to hear you can relate to my feelings of guilt, and why I experience that emotion. I sure wish it wasn't this cruel disease that brings us all "together" via this site. I can relate to your apologizing for everything in advance of your asking - I hate having to ask, but there is just nothing I can do about that. A lot of people say I should let the guilt go because holding onto it a) isn't good for me and b) isn't because I did something wrong, but that is easier said than done unfortunately. It is so hard to let them go, or get rid of them, I completely agree. If you find any coping tools for this, please do let me know... hang in there, and so sorry you're also going through this. Feel free to write any time, as I truly understand this and share in your experience.
Kindest regards,
Charlene.
Moses Samson
Hi Charlene,
I too experience same guilt due to IPF.
Adding to your list i feel guilty about the below.
1) I feel guilty of not attending the church due to weekness: I personally feel that God is my ultimate supporter, still I feel I am moving away from God as IPF made me pessimist with no hope of recovering.
2) I feel guilty for disturbing my wife’s sleep with my cough during Night: my suffering is taking Toll on my wife’s sleeping and there is nothing I can do about it. I feel just helpless.
3) I feel guilty that I am not being a helpful resource to my colleagues: I work in a team where Junior (fresher) has many doubts ans I try my best to clarify them, But, if the same doubts are asked again and again I’m losing my Patience.
I think Somewhere I am expecting my colleagues to understand my situation. But that not being happening I look like grumpy team member. But no one knows what I am going through.
4) I feel guilty fo asking cab drivers to pick me up and drop at my door step: this makes the cabbie to drike additional 2 miles and they always feel bad as its costing them more fuel. But I am not in position to walk long distances as I feel breathless.
5) I feel guilty that I am not able to talk to my parents and siblings on phone for long time:
continuous talking makes me cough and I end up disconnecting the call as I do not want to let my family think I am not doing goo.
And my list goes on....
Charlene Marshall
Hi Moses,
Thank you so much for reading my column and for getting in touch via the comments. I sure wish it wasn't this dreaded disease that brings people like us together online, to a place where we can relate to one another in our writing. However, because it is, I am very grateful that you have share your experiences about feeling guilty with me as it brings me comfort in knowing that I am not alone.
I have begun questioning my religion and/or faith as well, since dealing with this illness and that upsets me. I feel guilty about it, but that is just how I feel ... I don't know why I (and lots of amazing people I've come to know via this site) have to deal with this horrible illness!
I couldn't agree more with you re: the colleagues. Even when people claim they understand, they just can't and that isn't their fault ... or ours! It's frustrating because I too feel like I am doing the best I can yet, and somehow it doesn't feel good enough. That might not be true in their eyes, but it is how I percieve it and then I feel grumpy as a result.
So sorry you're experiencing these things too Moses. They are so difficult. Please know you aren't alone in these feelings, and that if there is anything I can ever do, please don't hesitate to reach out. We truly "get it" on this site!
Take care,
Charlene.
Michael Lamkin
My guilt regarding IPF was increased by the fact that physically my body had been pretty much devastated by Valley Fever (incredible weight loss (mostly muscle) and overall weakness and loss of balance. At the same time I was told the Valley Fever had gone dormant (no cure) I was also given my diagnosis of IPF. After telling my wife the good news of the Valley Fever having gone dormant I just didn't have the courage to tell her about the IPF. After almost two months I finally managed to do so a few days ago. The guilt was almost overwhelming but I think she knew something was wrong because instead of improving physically I seemed to be getting a little worse. She did seem to take the news better than I expected. Still haven't told anyone else but I'll get around to it, I'm not in a rush.
Charlene Marshall
Hi Michael,
Great to connect with you on here, in addition to our forums. I hope you are doing well!
Thanks for reading my columns, and for sharing with us the difficulty that came with disclosing your IPF diagnosis to your wife. I'm glad she was able to accept it a bit better than you expected. It will take some time to adjust I'm sure - I remember the initial stage of diagnosis very well, and how much confusion, anger and sadness I experienced after hearing I had IPF. I hope you feel a bit better now having it out in the open; holding onto guilt is such wasted energy for us. That said, I do it all the time and know that it is way easier said than done to let go of it. Wishing you peaceful days ahead Michael.
Take good care,
Charlene.
Alfred Arnold
Hi Charlene,
I am very happy to report excellent results from today’s pulmonary function test. Today’s test was compared to the original test performed in December. My lung capacity improved by 15%. This is very good news and most likely was improved because the first test was performed 1 month following the end of 6 chemo treatments. I am not going on any medication at this time. I will be re-evaluated with a high resolution CAT scan and another breathing test in February 2019.
I feel good and have kept up with my other medications for blood pressure, heart health, thyroid and prostate. Results for these conditions are all in the normal range!
Charlene Marshall
Hi Al,
It is so great to hear from you - I've often wondered how you are doing, and what incredible news this is to receive. I'm so happy for you! A 15% increase is incredible, and you must physically be able to notice a difference as well with an increase like that. So glad things are going well, and that you don't have to go on any medications right now. Enjoy and celebrate these results, and hopefully all good things until your next breathing test and HRCT in February 2019. Wonderful news, congratulations again! Thanks so much for the update :)
Cheers,
Charlene.
Linda
I have just been diagnosed with PF on reading about it I'm really worried as it's going to take a couple of months to see specialist I had never heard of it before and after reading articles it seems that in going to die sooner rather than later I am not on oxygen but was in hospital as I get phnumonia each year on seeing my GP this week he was very concerned and organised the specialist I'm going to the best one where I live he does transplants but I'm sure with every country the donor list is so long you normally die before you get one I've been shown X-rays from last year to this year surgeon said 1/4 of my lungs effected
Charlene Marshall
Hi Linda,
Thanks so much for reading my columns and for connecting via the comments. I'm so sorry to hear of your recent PF diagnosis - I remember that time well, and how scary, confusing and upsetting it was. My biggest piece of advice, is to ensure you're reading credible information online. There is so much out there and much of it is scary, or not from a credible source. While the prognosis online is poor yes, there are lots of people who have lived 10+ years with this disease and supplemental oxygen use or lung transplantation can definitely increase the length of time someone can live with PF. Not requiring oxygen yet is a good thing! I know lots of people who are put on 24/7 supplemental oxygen as soon as they are diagnosed. I also know tons of people who have had successful transplants, including a friend of mine who just had her second transplant done after 2.5 years of waiting and she was kept stable during that time. Hang in there, and make sure you ask lots of questions (Write them down if you have to) for the specialist when you get in to see him/her. Feel free to connect anytime, and I hope our site provides some positivity for you in the coming months and years.
Take care,
Charlene.
JUDY KRASOVEC
Is there any information about stem cell it seems promising.
Charlene Marshall
Hi Judy,
Thanks for reading my columns and for getting in touch via the comments - it is great to hear from you! I often wonder how you're doing, and hope that things are going as well as possible for you. I haven't heard a lot about stem cell information that is credible, except for some information out of the Department of Regenerative Medicine that sounds promising but that is only from someone else's personal experience that I know if it. I don't know of any public information or literature supporting this procedure yet, unfortunately. Here's hoping though that it comes through soon! If I find anything out, I'll share it here for sure.
Kind regards,
Charlene.