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Letting Go of Guilt as a Patient with Pulmonary Fibrosis
Navigating life with any chronic illness is not easy, and there are an abundance of emotions that come from a diagnosis of a life-threatening lung disease such as idiopathic pulmonary fibrosis (IPF). In the months following my own diagnosis in 2016, I experienced everything from relief that I finally had answers to anger, sadness, frustration and likely even depression. While these emotions have changed since the confusion of my initial diagnosis, they are still ever-present as I learn to live with my fatal lung disease.
One of my most personal struggles is dealing with the guilt of being sick. This emotion rears its ugly head in so many different situations and contexts pertaining to my illness and never seems to get easier to deal with. However, as of late, something has shifted within me and I am intentionally letting go of feeling guilty as a result of my chronic illness.
Here are just a few examples of where feelings of guilt come from, and believe me, there are many more:
- I feel guilty that I request time from others as I learn to navigate my illness. Sometimes I need physical help when I am feeling unwell, and other times I need emotional support as I am processing things and both of these things consume time from others’ lives.
- I feel guilty that I need more accommodations and flexibility at work than my colleagues. This is pretty self-explanatory, and I would do anything to not need any accommodations/flexibility at work if it meant I could be healthy.
- I feel guilty that I can’t always verbalize how I am feeling about my illness and sometimes that results in emotional outbursts or anxiety that can be difficult for others to witness or experience.
This all being said, I have experienced a shift in my thinking as a result of a recent fallout with a friend and for some reason, I have been able to go of a lot of the guilt around things I would have previously had difficulty with. I still care about this friend, and think we will sort out our issues eventually, but somehow this argument has enabled me to focus more on myself and my needs and not feel guilty about it. This has also given me a sense of peace and freedom that I’ve never really experienced before!
I am prioritizing my own needs, including my health, before the needs of others and I have to admit: this is the first time I’ve really been able to do this. If I don’t want to do something, I’m not going to and if I have to say no to someone else’s needs, I will …. and I won’t feel guilty about this. Letting go of this guilt has made both a mental and emotional difference in my life this week; I feel happier overall and more focused on what I need and what makes me happy. I think it has also made a physical difference within me as I am sleeping better as well. That is only a bonus!
Do you experience guilt as a result of your diagnosis of IPF/PF? What makes you feel guilty?
How do you shift your thinking to avoid that guilt, or let it go? I’d love to hear from you!
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24 Replies
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I, too, have had a falling out with the person I thought was my best friend. I have had a LOT of issues hit the past 2 months and she has been unwilling to be there for me in even the most basic ways. She was the first person I told about my diagnosis, even before my husband. I shared everything with her. Everything changed when she found a military support group on facebook. I no longer mattered. This has been like a death for me. My brother and a good friend both had a stroke 3 weeks apart. I have been unable to go visit my friend and have had to step up as care taker for my brother while we struggled to get him into a rehab facility (Thanks Humana). My parents are aging and unable to physically get him to therapy so I was taking him. We finally got him in somewhere for at least 2 weeks, next week we try again. While this was going on, my granddaughter was diagnosed with PANDAS, a rare disorder following strep. I was dealing with all of the stress alone. Last week, I was diagnosed with CHF/Pulmonary Edema, following 2 weeks of chest pain, that wasn’t cardiac. Now I HAVE to put myself first, I know this, but the guilt is killing me. It is so hard not to be the glue that holds us together. I had a meltdown on my daughter for being inconsiderate in showing up unannounced with friends to use the pool. Guilt again. I would love to be able to move past the feelings of guilt over taking care of ME. Any suggestions would be greatly appreciated. THE STRUGGLE IS REAL! 🙂
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Hi Michelle,
Thank you so much for taking the time to read and respond to this topic thread. It was a tough one for me to write about, and I really appreciate hearing from you, although I am so sorry to hear you’ve had a similar experience! Isn’t it difficult to deal with?
Does she recognize that she isn’t being there for you in these ways? Sometimes I like to think it is just a matter of friends not knowing how to be there for you, but the sad reality is that it can feel like having a friend with a chronic illness (us) can get tiring, boring, old, etc. What hurts me the most is two things: 1) when a friend helps you and they hold that over your head, almost to make you feel guilty or 2) the relationship is not reciprocal and the scale of doing things for one another is tipped too far to one side, meaning one person is always doing something for the other. This feels like my experience: my close friend did a lot for me, and believe me, I wouldn’t have gotten through some tough times without her and she doesn’t let me forget it. However, I’ve also done a lot for her which feels like it has gone unrecognized. This is infuriating for me!
So sorry to hear of everything on your plate, this must be very stressful for you. That said, you must take care of yourself and prioritize your health first. I know the feeling of guilt, that is for sure. However, the quote of “you can’t pour from an empty cup, take care of yourself first” pops into my mind on the regular and I’m learning to put myself first. It is a steep learning curve though, I admit!
For the situation with my friend, I wish I actually knew what it was that made me be able to get the guilt of that go. I’ve actually been trying to figure it out, but I’m not sure what just “switched” in my brain. I think I got so tired of our relationship always being so complicated, and difficult, that I almost got to the point of “I don’t care anymore”. Obviously I do care, and if she needed me, I’d go to her in a heartbeat but I’ve lowered my expectations around what our friendship is going to look like going forward and I’ve figured out how to no longer ask her for things. Then she can’t hurt me by saying no, nor can she hold it over my head that she “always” helps or is “always my caregiver”. Not sure if you could apply this to your current situation? I’d be curious to hear others suggestions too!
Take care Michelle, and please feel free to write any time.
Kindest regards,
Charlene. -
I always find myself apologizing to others for me requesting some help .the guilt I feel for getting ipf is at times overwhelming I know is not my fault but for some reason I can’t stop apologizing . I hear, no problem , anytime you need anything just say the word , I’m not wired like that ! I try to do as much as I can , but for some reason it’s never enough , my wife is so understanding of this , she tries to comfort and says there is no shame in asking for help , well how I was brought up there is ! I just can’t reconcile this part of my life . And when I’m asked ” how are you doing ” I always say ” not bad , and you ? ” I just don’t want to bother other people with my ipf ,,I feel they have their own problems they don’t need to hear mine ! I hope and I feel you do understand .
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Hi Chuck,
Thanks for writing, and sharing a bit about your experience with this. Unfortunately yes, I do very much understand how you’re feeling as it sounds like we share many of the same emotions and guilt associated with needing help due to our illness. While it isn’t our fault that we got sick, and others often understand this (sometimes they don’t, or they still make us feel even more guilty…) it still feels awful to not be able to do what we once could independently. Do you feel more guilt over needing help physically or emotionally? I ask this because for me, it is easier to say “hey, can you help me get groceries tomorrow” vs. “hey, I really need to talk about how I am feeling, can you give me some of your time to listen”. I think for me, the emotional support is actually harder, and since there is a lot of vulnerability in asking for this, I only opt to talk with a few close friends about it. However, I am starting to think those friends are getting tired of listening to me. Its so hard to navigate this illness!
Like you, when people ask me how I am, I often just say that I am fine as opposed to launching into how I am really feeling. It is just easier this way, because I know everyone has their own stuff to deal with. I actually wrote a column about this last year, you can read it here if you are interested.
Take care and thanks for writing about this. We truly do understand here on these forums, and know that when you write us you’re among friends.
Kind regards,
Charlene.
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Chuck,
I am a lot like you. I HATE to ask for help and when I do, I apologize and agonize for it for days. I think trying to come to terms with the fact that I won’t be able to do some things again without help is the hardest part of this. I have always prided myself of being very independent. I have a loving husband who will move heaven and earth for me if I would allow it, but I struggle to ask him to refill my water, or help with household chores and when he does help, I feel awful because I should be the one doing it. I think we have to come to terms with IPF before we can learn to forgive our selves for the guilt we deal with. The struggle is very real for sure. I think this forum and if they get a support group going (hint, hint :)) is a great place for us to vent and to share your problems without judgement as we are all in the same place. Can’t wait to chat again!
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Thank you , you do understand ? , it’s hard to reconcile the help factor , I do have the ipf thing down , people work 8+hrs a day , to call them up ask help for help with cutting wood for winter , I just can’t do that !indepedence slips away so fast ugh !
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It sure does Chuck. So sorry we’re all experiencing this, although I am so thankful for this forum and the support of so many wonderful people on here who truly understand. Thanks for being part of our forums!
Sending you best wishes.
Charlene.
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Hi Michelle,
Thanks for your thoughtful reply to Chuck, and for sharing that your experiences and feeling associated with asking for help are similar. Mine are too, and it is so hard to accept that the things we once could do on our own, are no longer possible. I agree with you, I think it is the hardest part of this illness!
As I asked Chuck, do you find the asking for physical help or emotional support harder? I find asking for help with a task that is quantifiable with others time (ie. an hour to run an errand) is actually easier for me than asking for someone’s time for emotional support. This is because I never know how long that might need, but arguably, this type of help is just as important as the physical pieces. Curious to hear your answer / thoughts on this.
Thanks for the hint re: that the support group might be beneficial (loved that!! 🙂 ) … hang tight, we have a phone meeting about this tomorrow, so I am excited to discuss this possibility further!
Chat soon Michelle, thanks for being part of our forums community.
Cheers,
Charlene.-
It’s very hard on me emotionally and if I sat and thought on some , I could connect the dots on the physical aspect on needing help .
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Agreed Chuck, the emotional and physical aspects of this disease are both so tough.
I hope you’re having an okay day today!
Charlene. -
I used to think it was the physical things that were harder. I had a best friend that I shared everything with and could rant for hours with her not being bothered by it at all. We had a falling out for unknown reasons. I tried trusting my sister but that didn’t work out so well. So apparantly she contacted my friend and asked her to please step up to help me. It’s a beginning anyway. My husband is very supportive and attentive at times but he is very scared of IPF and shuts down. He willingly steps up and does household chores when I can’t. We have 4 adult children that are all adopted. 2 of them are mentally handi-capped. The other two both have a lot issues as well. 2 have battled meth several times. Amy, oldest has a 12 year daughter, Angel. Next is Katie, she has 12 Alex and 10 year old Memphis, Joe is next and is married and has Sarah 6. And the youngest is Ray who is engaged. They are all 10 miles away except Ray who is 30 miles away. I just hate asking any of them for help as they all have busy lives as well. Both of my parents are still living but I try to get them to stay focussed on my brother who at 49 had a stroke 2 months ago now. And my best friend lives across the US from me now, in Virginia! After all of this babbling, I think now the emotional part is harder for me as I really feel alone without my bestie to lean on. No one else really “gets” it for me. We shall see. Have a great weekend everyone!
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Hi Michelle,
Thank you so much for opening up and sharing this with us. This disease is just so cruel isn’t it? It isn’t enough to steal our physical abilities and independence, but it has to cause so much emotional turmoil too – not only just within us, but within those who love us as well. It’s very stressful, sad and aggravating all at the same time!
I also used to think the physical things were harder, because they could have a start/finish time on them (ie. 6pm errands until 7:30pm) but now I definitely think the emotional part is harder. Not only does it take a lot of vulnerability to voice our needs and what we’re struggling with emotionally; but I also find myself censoring what or what not to say based on how I assume others are coping. This isn’t my responsibility, but I do it anyways and I can’t help it. Similar to your husband, I have some people in my life who shut down when I bring up IPF too, or they shrug it off like it is a flu/cold virus that I’ll just “get over”. I rarely talk about the prognosis of this disease because it is just too much.
Sounds like your adult children do have busy lives, although I wish they would step in to help you a bit more too. Everyone has busy lives, and it is hard asking for help but everyone needs it from time to time. I’m sure if the roles were reversed you would step in to help them. Hang in there – I’m working hard to see if we can create a platform to help patients when they feel like no one understands. Until then, know that you can write any time.
Kindest regards, and I hope you also have a nice weekend.
Charlene.
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Charlene and Michelle , for me ( a man ) these are not easy things for me to talk about ! To talk like this with my wife is at times difficult (26 yrs ) she knows what kind of man I was and now she gets to watch me disappear slowly before her eyes , does that make sense ? Anyways , emotionally it tears me apart inside asking , watching other men do MY job ! Physically ? It hurts in my stomach at times to sit and watch , at times I just disappear until they have left . Its hard very hard . Charlene you never as far as I know talk about your support at home , if you have iced missed it . Me , I have my wife (60) plus our daughter and her daughter ( 32 – 7) living here helping , but, our daughter when born had the cord wrapped around her neck , she is challenged at times , things when rough she doesn’t really understand , she helps my wife kinda in her own way , the 7 year old helps as much as she can never complains .the others live a distance away but chip in when they can . It’s difficult for my wife , so end of rant . Hope you have a good day both of you
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Hi Chuck,
Thanks for writing and sharing such a vulnerable part of yourself. I really appreciate the time and bravery you took in writing how difficult it is for you to talk about your emotions. I hope (and pray) that the stigma of “men don’t talk about their emotions” is being torn down in today’s day and age. For me, as a young adult, I don’t think I ever lived in the era where men weren’t encouraged to show their emotions the way women do. I actually don’t even see a gender comparison anymore – I have as many guy friends who struggle with things emotionally as I do girls. There is far too much pain and suffering in the world (amidst beauty too) to ever ask men to keep their struggles internalized. I don’t think that is fair, so I do hope you try to eliminate that stigma from your mind when you’re feeling the need to talk about the emotional/tough stuff.
As for the physical pieces, yes, that I can resonate with for sure. Watching others’ do my job or even have to re-do some of the things I can no longer do well is extremely painful both physically and emotionally. I try, but sometimes I know I am not able to do my best work and that others’ notice. I used to pride myself on a really strong work ethic, and now, I can’t actually say that I really care all that much about work. Thats painful because so much of me is defined by my career, which I love!
I’m not sure what you’re asking about in terms of my support at home Chuck, I couldn’t decipher what you had typed. Were you asking me what type of support I have at home? Sorry to hear of the struggles with your assistance at home Chuck, that sounds tough. Your wife does sound like a wonderful woman though, and very supportive of you. Due your ages, would you qualify for any outside help to come in and assist you with things like lawn care or house cleaning? I’ve even had to ask for this as a result of my IPF diagnosis. Just an idea, and of course only one to explore when you’re ready.
Take care, and thanks for writing.
Thinking of you,
Charlene.-
Yes I was asking what kinda in home support you might have , this question does not need to be answered I’m naturally a curious person . And by no means do I mean to intrude .
Chuck -
Hey Chuck,
No worries at all, I don’t mind answering your question about home support!
Unfortunately, I do wish the help I receive was a bit more structured and consistent, but I am thankful that it exists at all. I can still navigate a two-story home on my own, I am just intentional about how often I go up and down the stairs as this is the hardest thing for me at the moment. I have both a home and portable oxygen concentrator, as well as tanks kind of spread throughout the house. My family, friends and colleagues come over to help from time to time — sometimes they make me a meal, or walk my dog, cut my grass, help clean the house etc. It isn’t consistent in terms of regular support (except the lawn/yard maintenance, which I pay for) but everyone is close by that if I called I can usually get someone over to help me. Hopefully that answers your questions a bit! Feel free to write any time 🙂
Regards,
Charlene. -
I’m very happy to hear of the support you receive! It kinda makes me feel more comfortable to know of one who struggles has a system of checks and balances. I’m sure you know what I mean . I have an appointment this Wednesday with my pulmonologist.
Stay as spirited as possible !
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Hi Chuck,
Thanks for getting back to me, and I hope you’re having a nice weekend!
Definitely the support I have in place is not perfect, and sometimes I wish it was more often/consistent, and other times I wish it was less (sometimes my parents can be a bit overbearing). I find getting what I need with IPF is a delicate dance, because there is just no rule book to follow or instruction manual that tells us how to cope with all of this. Somedays I wish there was, as I believe it would be easier.
Goodluck with your upcoming appointment on Wednesday, I do hope it goes well. Will be thinking of you!
Cheers,
Charlene.
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Hi Charlene
im a little confused with regard to posting on the forums. I’ve noticed a few posts I’ve made seem to disappear into cyberspace and never to be found again. I’ve only tagged one person on my posts and there have been posters where I’ve tagged no one it some still show up. Does it make a difference if I post on an email update or if I go directly to the forum? i will tag you on this post.
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Michael hello
I made the mistake of actually replying to the email and found that it is a *no reply* address so of course will not actually appear on this forum, is that maybe what you did too?
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Thanks for sharing Sue…. this could have been what happened to Michael’s posts too. Sometimes technology is a wonderful thing, and other times it causes us so much frustration when it doesn’t work. Thanks for this tidbit of information!
Cheers,
Charlene.
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Hi Michael,
Thanks for getting in touch and letting me know about your concerns with previous posts you’ve made that seem to disappear. For the most part, we’ve worked out all the “kinks” with this system so there shouldn’t be issues like that remaining. However, sometimes we miss things…
In terms of ‘tagging’, it actually doesn’t work in a topic reply such as this. It only works when you post an update on the main / activity page. You just type @ then no space with the cursor and a number of names should auto-generate based on the first letter you type in. So if you wanted to tag me, you would type @C and then my name should auto-populate along with anyone else in the forum whose name starts with a C. Does this help at all? Again, it only works when you’re providing a status update or replying to one, not on topic replies such as this. I know this can all be a bit confusing…
Your posts shouldn’t be disappearing into cyberspace though as it is all credible content that you share, therefore your replies shouldn’t be marked a spam. Are you sure they aren’t on the forums somewhere? A good idea to find previous posts is to use the search tool at the top right hand of the main page and you could type your name in to pull up all of your posts. Try that and see if you find the ones you’re looking for? I can ask our tech team on my end as well to see whats going on …
Let me know and hope this helps a bit!
Charlene. -
I am so very lucky to have a very very wonderful and supportive friend, my daughter also lives over here but has had a couple of severe health problems herself and just couldn’t help for several months, now she and her husband have had to go back to GB temporarily to earn some money due to my daughters illnesses and a tenant in my daughters house not paying rent, he is being evicted on the 15th of next month thank goodness. My friend has been to all three of my appointments so far as I cannot passenger, sea sick but also have absolutely no sense of direction and to get to the hospital is complicated, she has to go to the same hospital for her glaucoma so knows the way well. Used to know where it was before the BIG move to a brand new huge place. I absolutely hate asking her to do these favours for me as it is an hour and a halfs drive away plus the waiting time, not too long, plus consultation time and then an hour and a half back again. I even had to ask my friend who does home help, to help me clean the basal kitchen cabinets as I struggle to bend. I of course paid her as I said I wouldn’t have asked if I didn’t expect to pay, having to pay for a lot of things now my husband is dead. I would rather pay some unknown than ask favours, stupid I know. My friends husband died three years ago also of cancer. I live in a very tiny hamlet and people are getting to know my diagnosis and are all offering to help with things like getting the logs stacked, yes I have log burners, doing the mowing, I can still do that myself as I have a ride on here and in the holiday home I own fairly near by, both places have 2,000m2 of garden, have to pay a gardener to do the garden at the gîte (holiday home) other than the mowing. Will soon have to ask some one to help me there if my daughter is not around as I cannot easily make a bed, clean the base of the shower, things like that.
As I am on 100% with the Health care system here (don’t pay a penny) I will be entitled to a home help soon, and also handicapped parking and many other priviledges that will make things a little easier, like a personal shopper, wouldn’t use that as my daughter will always do that.-
Hi Sue,
I am so glad to hear that your friend is so supportive, this is excellent news as it isn’t always the case for those living with IPF/PF/CPFE so it made me happy to read your opening sentence in your reply. I am lucky too in having friends who help me as often as they can with my needs as my lung function declines, although the friendships have changed as of late but I suppose every goes through hardships occasionally when it comes to close friends, right? Glad your daughter and her husband aren’t far as well, although sorry to hear of her own health challenges. That sounds tough on you all!
It is never easy to ask our friends for help is it Sue? Even though oftentimes they offer and say they are happy to help, I always still have a hard time with this. That being said, I’ve challenged myself to reverse the rolls and reflect on how I’d feel if I was the healthy friend and my “sick” friend didn’t ask me to help when they needed it. That seems to help with building up my courage to ask people to help me when I need it. Glad your friends are able to be there for you.
Your holiday home sounds beautiful, what a nice escape for you even if you do have to pay someone to help with the chores/tasks of maintaining it. Beginning this year, I also had to hire someone to do the mowing as I can no longer do this myself. Sometimes I think living in a small town or hamlet is actually nicer when you’re ill, because while it can feel overwhelming when news of your illness spreads, it is also nice to have multiple offers of help from such a close community.
Glad you will eventually have access to a few things that will make life a little easier for you Sue. Even if they are hard to accept, it is nice when things are made a little easier for us. Any mention of oxygen use yet? Sorry if you’ve told me this already and I’ve forgotten….
Hope you’re doing well and enjoy your weekend as best you can.
Regards,
Charlene.
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