Frustrating Things People Say to Patients with Pulmonary Fibrosis
It is human nature to try and relate to one another, especially in times of difficulty. So, when a patient living with pulmonary fibrosis (PF) is having a tough time, it is natural for others to try and relate to our experience. Despite knowing that others intend to be kind and supportive, sometimes I am frustrated and upset at the things that people say to me as a patient with IPF.
This happens so often that I think I could write a book detailing the many ways that others try to relate to what it is like not being able to breathe. I know people mean well and are genuine in their attempt to connect with me, but living with chronic lung disease is very different from being congested with a head cold. I try to internalize my frustration or anger when people claim that they know what it is like to not be able to breathe or to be tethered to an oxygen cannula for most of the day. Externalizing the frustration won’t do anyone any good, as people are always well-intended, but it doesn’t mean I don’t feel those emotions.
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Below are some of the things I hear on a regular basis when others try to relate to my illness, and usually it is these comments that leave me feeling pretty frustrated:
- “I know how you feel; I had bronchitis once.” People are well-intentioned when they say this, and I know symptoms of bronchitis are unpleasant, but they are short-lived. Having bronchitis is not like living with IPF.
- “Stay positive.” I understand and respect the importance of positivity when it comes to living with a chronic illness. However, sometimes when your body feels riddled from a constant cough, poked and prodded from bloodwork, or scanned regularly; it can be hard to feel positive. As important as it is to be positive whenever possible, I think it is equally healthy to accept and “feel” the bad and tough days, too.
- “You’ll have better days …” Yes, you’re right, I will have better days. But in the tough moments when I am seeking out support, it can feel like those better days are few and far between. While it is important to look ahead and remember that things will get better, I believe it is also important to be real in the tough moments.
This is a difficult column to write. I am so thankful for the support network surrounding me, and for the efforts of others to help me during tough times. I don’t want to minimize or belittle people’s kindnesses. However, I can’t help but feel irritated when others say certain things to me.
Are there certain things others say to you that cause you frustration or upset when they try to relate to your experience of living with PF?
If so, what are they and how do you respond to those comments? Join this discussion in our Pulmonary Fibrosis News 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
Donald Otis
Yeah, that is the truth. I mean, I am to the point that, while I don't like to lie, I hate telling the truth more. You get those, "well, everyone's dying, really, when you think about it" kind of responses that really make you want to just pop someone, 'cause, like, no, you're not, trust me. "So, you have good days and bad days, right?" Um, no. I don't have whole 'good days'; good hours, sure. Days, no. But, everyone's got problems, and, you know, tragedy is when I stub my toe, comedy is when you fall down the stairs, so I just don't talk about it; and since it is the bigger part of my life, I don't talk about much. I'm kind of a ghost these days, but that is easier than explaining bad things to people who really don't care.
But, then, I'm old, and such things as this, it seems, are expected; my heart goes out to you, so young, with this horrid thing. Are you taking Esbriet or Ofev, and is it making a difference? Have you tried CBD or THC for side effects and symptom control? How about Zofran? Do you live at altitude, and have you thought of moving to sea level? What can I possibly do for you to help see you through?
Charlene Marshall
Hi Donald,
Thanks for reading my columns and for getting in touch via the comments, it is always great to hear from you! Your words about not wanting to lie, but preferring to keep the full truth inside of me instead of sharing it is something I can really resonate with. It seems easier to just tell people we're doing fine, doesn't it? People just don't seem to understand and they want to compare their struggles to ours, when really there is no comparison. I'm not trying to sound like my problems (ie. IPF) are worse than anyone else's, we all have our struggles, but it is hurtful when people compare their smaller things to our struggles, like stubbing their toe as you say. I've become a lot more introverted since being diagnosed as well, it just seems easier that way for me.
Thank you for your kind words, it certainly is tough to live with IPF as a young adult but my team is so committed to helping me find options to extend my life. I'm excited to see where research goes in a few years, I just want to survive long enough to see these things. I am taking OFEV, and I do think it is helping overall but it is hard to compare. My PFTs are relatively stable, with just a few declines over the past few tests but I Would imagine those declines would be a lot more steep if I wasn't on the OFEV. I have tried CBD for side effect management and it does help but I find it screws with my sleep a bit (I just tried this recently) which I really need right now so I don't use it often. I haven't tried THC yet. Do either of these things work for you for symptom management?
thanks again for writing Donald. Wishing you well!
Charlene.
Brenda Sisk
Hi Charlene. I can definitely relate. But I've got to share this. One day last month I was walking out of church with a very good friend. I was lagging a few steps behind and she says, "My gosh it's so hot out here I can hardly breathe!" Without thinking I spouted, "Ya think!" At this she turn around, shot me a look like "I'm so sorry!", I busted out laughing & said, "Well at least I have backup." (patting my POC) Then I asked if she wanted some; I'd share. We both had a good laugh, got in our cars (mine cooled off because I have auto-start, her's hot because she doesn't) and went our separate ways. Many things we hear are frustrating and people are well-meaning in their efforts, but when I can, I try to keep it light while at the same time letting them know they truly have no idea what it's like living, 24/7/365, with IPF.
Here's to more moments on the lighter side!
Keeping you in my prayers.
Charlene Marshall
Hi Brenda,
Thanks so much for getting in touch via the comments, it is always great to hear from you! I'm so glad you shared this story, it reminds me that despite the difficulties of our illness, there is still room for us to laugh and make jokes about it. I sometimes offer my POC to others too, just as a joke and I laugh when they think they can get 'high' on the oxygen coming from my POC. Keeping it light is very important I agree, and cheers to many more of those moments. Thank you again for sharing and brightening my day with this story!
Kindest regards,
Charlene.
Adriana Reed
I hear " at least is not cancer"
I say nothing.
Or" You must be getting better you look good" Thank you but I have IPF and PH ,I am still dying.
Charlene Marshall
Hi Adriana,
Thanks for reading my column and adding your comments. I also often hear "at least its not cancer" as well, and it is incredibly frustrating. I get really irritated, but like you, most often don't say anything in the state of mind I'm in when I hear this comment. Yes, I'm glad it isn't cancer too but in a way, I feel like more people would understand what I'm going through or show more compassion if it was. Is that terrible to say? IPF is just as fatal, or arguably more than many cancers and the hardest part is that most times it is an invisible illness. This makes it so hard, because we aren't doing better just because we "look good". Although I wish you didn't experience these, I appreciate hearing that others get these insensitive comments as well. Thank you for sharing with me, and wishing you nothing but the very best Adriana!
Kindest regards,
Charlene.
Diana May Ross
Hi Charlene and Adriana, My hubby suffers from IPF, and I have heard the comment, 'At least it's not cancer' multiple times. My comment back is 'No it's worse' and tell 'em to look up IPF. Best wishes to you both
Charlene Marshall
Hi Diana,
Thank you for reading my column and for getting in touch. I so appreciate hearing from others, but wish it wasn't IPF that connected us all. Sorry to hear of your husbands diagnosis, and even more sorry to hear about some of the insensitive comments you've been hearing as a result. How terrible to hear 'at least it's not cancer'. I think your response is a good one, inviting others to look up what IPF is so that they are aware of their comment and don't repeat it to others as a result. Thank you again for sharing your experience, and I certainly hope you don't run into these comments much going forward. Sending you and your husband best wishes@
Charlene.
Patricia
It is funny because my pulmonary doc said the same thing to me when he gave me the test results....currently looking for another doc
Charlene Marshall
Oh Patricia, I am so sorry to hear your doctor has said some of these things to you! That feels both cruel and unfair coming from a physician who is supposed to help you. Very sad indeed, and I am glad you're looking for another doctor. Goodluck and thanks for reaching out.
Charlene.
Barbara Grubb
Good Morning! I just found your column. I agree on most of the comments. Really, when people ask how are you today, do you really think they care? I feel they think it is the proper thing to do. I don't care if it is my worse day ever, I always reply I doing well. I too have gotten the response well at least it is not cancer and Oh I feel so sorry for the people that have cancer. I feel for them also but would never say to a cancer patient well at least it is not IPF! I am new to this disease. Have been diagnosed almost a year ago and have learned so much about a disease that I had never even heard about. Love your post!
Charlene Marshall
Good Morning Barbara,
Thank you so much for reading my columns and for getting in touch. Sometimes I feel as though asking how you are is less to truly find out, and more a bit of a social norm that we're used to doing. As a result, I usually launch into the fact that I'm doing well also, despite how I am really doing.... it doesn't feel authentic, but neither does their interest in how I am really doing when it isn't going to be a good response.
So sorry to hear of your diagnosis a year ago, and glad you've found out side helpful. If you're interested, please feel free to join our forums at: http://pulmonaryfibrosisnews.com/forums/ there are a lot of really great people and discussions taking place there too! We'd love to have you.
Kindest regards,
Charlene.
Carolyn
When I first was put on oxygen, I fought it. Oxygen meant I was doing worse. The first day I went to church wearing the oxygen tank and cannula, a well meaning usher shook my hand, smiled and said "how are you ". I know he meant well but at that time in my state of mind, I resented his comment. So my response was "I am wearing an oxygen tank how do you think I feel." Now that I am accepting my situation I am more accepting of other people's comments.
Charlene Marshall
Hi Carolyn,
Thanks for sharing your experience with us, as I think many people can relate to how you responded to the usher. While his intention (and that of many others) might be good, it can be tough for us to understand that, especially at first when we're dealing with so much. Glad you're feeling a bit more accepting of others' comments and your situation, that must bring a sense of peace for you? Thanks again for sharing and sending you nothing but best wishes!
Charlene.
Denise S.
Good Morning Barbara,
I had Pneumonia the end of March 2018 in Both lungs needless to say I was in a lot of pain and felt like a very weak like a kitten. I am sure you have heard that expression before. On returning to the Pulmonary Dr.'s office 2 weeks later. More test and 2 weeks later I was told that I might live a year at best if I don't get a transplant. The Doctor knew what I had but NEVER told me!! I asked about the clubbing of my nails and toe nails turning over the ends of my fingers.. I am was told I don't know. I am still trying to get a grip of the diagnosis. I guess I am in disbelief, denial or what has happened to me not really sure how to explain it. Maybe we can help each other with this. I am still in shock. Thanks for your input. Looking forward to your reply's.
Marilyn
Everything you said I hear and more. Like I hope you feel better or I’m glad you feel better or you look good or better days are coming or don’t over exert yourself or take it easy or stay strong or I know someone who has lung problems or a transplant or you don’t want to talk not realizing I can’t talk because I’m SOB. I don’t have a caregiver in my home with me because I had to move to the transplant center area recently. In the beginning of my diagnosis 2015 a loved compared her lungs being small to what I have and another compared childhood bronchitis to not being able to breathe. A lot of people haven’t seen me and only see Facebook pictures So think they know how I’m doing because I don’t look bad or sick. People also think my oxygen is the cure and that I’m receiving treatment to get better and when I tell them there’s no cure or treatment they don’t seem to understand that there’s only progression of the illness and it gets worse. It has to get worse/get sicker in order for my score to get higher hence the reason I’m listed. I get frustrated about what ppl say because I know they also say things that they think are uplifting because they’re not here and want to believe I’m better and it’s their way of feeling better about not doing anything to help. I know ppl mean well but unless they’ve had a transplant or been a caregiver they can’t relate.
Charlene Marshall
Hi Marilyn,
Thank you for reading my column and for connecting via the comments. Although, I am so sorry to hear you can relate to this frustrating experience! Even when people are trying to 'care take' for us by saying things like "take it easy" or "don't over exert yourself", it can feel frustrating too, despite their well intentions. So sorry about the comparisons, that is frustrating and I can relate directly to the experience of someone comparing IPF with Bronchitis. This really irritated me! Wishing you nothing but the very best as you embark on your transplant journey. Hang in there, and know that you're among people who really 'get it' here on Pulmonary Fibrosis News.
Kindest regards,
Charlene.
Denise S.
I am in the process of getting on the transplant list. So can you please tell me what happens after a transplant to your body? How long till you can get on your feet again?
You are so right about people saying stupid stuff like you and others have heard! Things that make you go HUM?? May each and everyone that reads this post I pray that God will give us all the strength to get through this horrific disease (still shaking my head) in disbelief. I remember what God has promised us. "If God brought you to it he will bring you through it" so I am doing what I can which all of you know isn't much. Thanks for sharing, your thought's and opinion's. I hope and pray y'all have the best day that you can. Here is to looking up!!
Chuck Harrison
I've only had two comments thrown at me 1. I understand I have asthma , I know how you feel . 2 this one is so far out there it boggles the mind , " you must have some unresolved sin in your life " that was actually said ! This one I replied to " all I said was really ?
Charlene Marshall
Hi Chuck,
Thanks for reading my columns and for reaching out. These comments certainly can be frustrating aren't they? So sorry to hear the insensitivity of others, regardless of intention - I cannot believe the comment about unresolved sins. That is very unfair and glad to hear you didn't give it much attention. Good for you.
Sending you nothing but the best!
Charlene.
Bryan E Cosnahan
It's good to have a safe place to vent our frustrations. I thought I was relatively young confronting IPF at 48 years old, but to face this in your 20's must be very difficult. Time becomes a very precious commodity. I try not to let the comments bring me down, but sometimes I can't help getting frustrated too. In the spirt of sharing, I've heard comments like "you gotta push through it", "we all have to learn to deal with the hand we were dealt", "gotta make the best out of a bad situation", and "at least it's not X (cancer, etc.)". I find myself just agreeing rather than wasting my time trying explain IPF, its impact, and progression. The public is poorly educated about this disease. Taking the time to explain the disease and its effects on my life is time consuming, time I could spend with my family or doing something I find important. I do try and find the silver-lining. My faith in God has grown and my family has grown stronger\closer as we deal with this disease. My thoughts and prayers are with you Charlene. Thank you for sharing. I don’t feel like I’m the only one dealing with these issues. Again, best wishes and thank you for the article. Bryan
Charlene Marshall
Hi Bryan,
Thank you so much for reading my columns and for getting in touch via the comments. I always appreciate hearing from others!
I agree about having a safe space to vent our frustrations, and thankfully this site and our Pulmonary Fibrosis News forums has given me that, for which I am very grateful. It is tough living with this disease at any age, as it sure seems cruel and unfair. So sorry to hear of your diagnosis, although I appreciate hearing about your attitude about not letting negative comments bring you down. I think we're only human though to let this happen a few times too!
Glad to hear this has made your faith grow stronger as well as your family, these truly are the "gifts" of IPF, or as you say silver-linings, aren't they? Wishing you well and thanks again for reaching out. Sending thoughts and prayers back to you!
Kind regards,
Charlene.
Rosemary lee
Seriously I can relate to most/ all OP have written. Perhaps two of the most annoying statements from well intended ppl are : you really should get out more, and you need to stimulate your brain more ! WTH?
I've always been a no pretentious open candid personality like me or not.
I can't be bothered w those type comments anymore until they walk a step in my shoes.
I'm on Oxygen 24/7, eyesight dwindling due to long term steroids. This forum is emotionally therapeutic for me as a virtual support group. Ty hugs
Charlene Marshall
Hi Rosemary,
Thank you for getting in touch with me and for reading my columns. It is always nice to know that others can relate to what I write, although I wish it wasn't this cruel disease that gives us something to feel connected by. Yes, those comments would be infuriating, I couldn't agree more! I think I'd want to scream "what does stimulating my brain have to do with my lungs?!!" I'm sorry you had to experience those comments, how insensitive! Glad you don't give them any more thoughts, energy or attention - there are many other positive things worthy of your energy these days. I appreciate hearing from you, and thank you for connecting. This site is very therapeutic for me also - please reach out anytime, you are among friends here. Kindest regards, Charlene (hugs!)
Denise S.
Hello Rosemary lee,
I have been on Oxygen 24/7 since March 2018, I am also on OFEV 150mg., I have been having these weird things that has happened to my eyesight. I wasn't sure what was going on now from reading your post I know it's the Steroids. Been on them for awhile a couple of months now. I have headaches, can't see to well needless to say they told my caregiver that I shouldn't be driving. Really now?? Do I have STUPID written on my forehead? If I do it's your reflection that your seeing not mine!! The Gall of some ppl still makes me shake my head they have no clue as to what is happening to our bodies, our life's & how it is affecting family members families. Thanks y'all for hearing me out.
Charlene Marshall
Anytime Denise, you're among friends here to truly understand!! Although, I certainly wish that it was not IPF that connected us. Wishing you the best, and feel free to 'vent' here any time! I am on OFEV as well and have been relatively side-effect free thankfully, but have heard of others struggling with this such as their eye sight, weight gain, etc. It can definitely be a combination between the steroids and the OFEV. Hope you can hang in there, thinking of you!
Charlene.
Gordon White
Yesterday, I had routine cleaning of my teeth. It was time for my "yearly xrays". One cavity was spotted and I agreed to return to have the cavity filled. However, last night it occurred to me that filling the tooth cavity will not extend my life. Why have more dental work when my demise is likely in 6 months or less? I'm going to call and cancel the appointment. I only have a little time left and the 3 hours to, at, and from the dental office is valuable. The reason to cancel the appointment is not because of pain or expense, it is to gain 3 hours of life.
Charlene Marshall
Hi Gordon,
Thank you for reading my columns and for getting in touch with us. I'm so sorry to hear that you're not doing well, and that you're needing to focus on your life down to the hours. Have your doctors told you that you likely have 6 months or less? I only ask, not to question you, but just to ensure that the cavity won't get infected and cause more troubles for you. This is of course your decision, but I only recently learnt about how serious dental issues can become as they are a direct source into our bloodstream. I hope you find much peace in these next 6 months and feel free to connect any time.
Kindest regards,
Charlene.
Denise S.
I hear you Gordon White, I can understand the cancellation!! Our time is (PRECIOUS)!! I wish you the best and enjoy what you have left. How long have you had IPF? What treatments have been done? When were you diagnosed? I was told on May 2018 I had maybe a year at best IF that,or if I don't get a transplant. I was dumb founded, Speechless to say the least. God Bless you!!
Charlene Marshall
Hi Denise,
Thank you for reading my columns and for getting in touch via the comments! Our time is precious, I certainly agree. I know your comment was in response to, and directed for Gordon, I just wanted to let you know that I am wishing the very best for you in the year ahead. Will you be evaluated for transplant? Just always curious to hear others' thoughts on this process as I know (and respect) that it isn't for everyone. Take good care, and kind regards,
Charlene.
John Barnett
Boy! Your article really hits home. I have gotten so tired of the responses that I rarely ever tell anyone that I have IPF. After a long coughing jag and someone makes comment, I just try to smile and nod my head and ignore any questions regarding seeing a doctor about that cough. I know people mean well, the problem is that they are often ignorant in how to respond. I love it when I do happen to tell someone I have IPF to find out that they too suffer from some debilitating disease. It isn't because I relish in someone else's suffering, but it is because they can relate. We can connect on another level and circumvent that awkward moment of conversation. And yet I realize that to not tell others about my disease is also somewhat selfish. It prevents me from making others aware of the disease. It prevents me from taking advantage of the opportunity to make a difference. It selfishly makes me keep it a secret rather than generously sharing it even if it means having someone respond as you have so eloquently pointed out in your article....kudos to you and keep up the effort knowing full well that you are not alone and that you are putting a voice on an otherwise silent disease.
Charlene Marshall
Hi John,
Thank you so much for reading my columns and for getting in touch with me. I love to hear from other readers, although I wish it wasn't IPF that brings us all together. I am replying to you right now with a tired mind and heart as well, as I am feeling frustrated with the responses and lack of help from others right now too. Do you use supplemental oxygen yet? I find people are less inclined to make rude and insensitive comments specifically about the cough, although the stares and asking why you use 02 does come with it. So, it's not really a trade off in the end. I also agree with you about the importance of being able to relate, I feel so much less alone when this occurs and our conversation feels refreshing and authentic, as opposed to superficial and fake (I'm so tired of these conversations).
Since I've shared my diagnosis, I do find more good opportunities, relationships, friendships, etc. have come and I am thankful for those but when I get stuck in a bit of a "funk" like I am now, I wonder why I bother sharing. It is emotional for me and then to deal with the frustration of others is tiring. Not sure what I need to get out of this slump I'm in right now but I'm just feeling really disappointed in others and thats hard... maybe I'll write a column about it! Stay tuned and thanks for reaching out :)
Charlene.
Kelly
Hi Charlene,
This is my first time commenting, I bounce in from time to time, read something and flit off-lol! I can be a sort of "elder-stateswoman" here because I'm 60 but more importantly, I've had IPF since 2000 so I've run the gamut of things. From this vantage point, almost 20 years later, I either don't get those remarks or don't view them in the same way as others might. I am on oxygen 24/7 and have been since 2003.
When I first was prescribed oxygen, I was on disability and had the big tanks. The disease wasn't as advanced as it is now so I refused to take those tanks out of the house, didn't want to be seen with them, they were an embarrassment to me. I went back to work in 2009 and still work full-time today - it was one of the best things that happened to me. I was part of the world again as opposed to sitting somewhere licking my wounds because of IPF.
At my job, no one asks me questions because they see me every day and they know, they can hear me coughing or see me stopped in the hallway trying to get my breath. Many of them sort of "caretake" me and if I'm coughing too much the question: "do you want some water" comes up. I accept the help they offer if I need it and am extremely appreciative when they take me into account for things. I do have accommodations at work and that helps.
In June I was taken to the hospital for what turned out to be an anxiety attack (those are awesome) and two of them came with me and then made sure I got home and brought my car. I am widowed with no family and I live alone, so that can be a bit scary. Mostly, I try to keep my focus on all of the things I can do as opposed to the things I can't.
I'm actually kind of a miracle and the more I can focus on that the better I am. I have a good life.
Charlene Marshall
Hi Kelly,
Thank you so much for reading my columns, and for your bravery in sharing a bit about your experience with us. I know that is not easy to do, but you never know how many people you are helping by sharing your story, so thank you so much for connecting via the comments. The fact that you've been on oxygen since 2003, and diagnosed almost 20 years is so encouraging, and you've inspired me and given me hope by just sharing that so thank you!
Also so glad to hear you went back to work and were using your tanks outside of the house. I'm sure this enabled you to get your life back a bit, kudos to you!
The issue of "caretaking" is ever-present in my workplace and among my experiences of living with IPF. Actually, it has become quite upsetting for me as some people do this naturally (even when I don't ask) and then claim they don't want to do this anymore when I've kind of gotten use to it so I feel a bit lost. It's really frustrating and has actually caused some disagreements among friends lately. I try not to let it bother me, but it really does.... I'll try harder to be like you, and just be appreciative of what people offer when they do. I also have accommodations at work and am thankful for this. How I wish I didn't need it though!
I hope you continue to do well, and thank you for sharing your story ... you certainly have inspired me! Kindest regards to you and best wishes!
Charlene.
Moses Samson
I often get annoyed with people at work who complain that I take more sick leaves due to my worsening of IPF. First of all they never asked me what Iam suffering from. For them all that matters is I should share their workload. Some ask me what exactly is your health issue? And tgen when I try to expain controlling my cough and breathing, I would realise that they are not even listening or sometimes they cut me off. I have decided not to discuss this with my colleagues as it doesn’t matter to them at all.
And some just ask how are you to which I do not have short answer I just smile and nod my head. And some call me even when I am hospitalised. I thought they called me to check on me, instead they just wanted my help on fixing few issues at work. Thanks for this column which is like my stress buster.
Charlene Marshall
Hi Moses,
Thanks so much for reading my columns and getting in touch via the comments. I couldn't agree more re: how annoying it is when people complain we are "off" more than others due to our lung disease. I would do anything to swap them for a healthy life, and leave them to taking as many sick days as they'd like while living with IPF. It's also very upsetting to have to use our vacation days for medical-related appointments, instead of actual vacation, which is what happens to me almost every year.
So sorry to hear your colleagues aren't supportive in terms of knowing what you're dealing with. That is so unfair, especially when we spend the majority of our waking hours through the week at work and with our colleagues. Save your energy in trying to explain, that is what is most important, especially if they don't appear to care anyways. There definitely is not a short answer to "how are you feeling", and sometimes smiling and nodding is just the easiest way to go.
Hang in there, and know that those of us on these forums truly "get it" and can understand how difficult this disease is. Write anytime!
Warm regards,
Charlene.