Frustrating Things People Say to Patients with Pulmonary Fibrosis

Frustrating Things People Say to Patients with Pulmonary Fibrosis

younger than 30

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.

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.

10 comments

  1. Donald Otis says:

    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 says:

      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.

  2. Brenda Sisk says:

    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 says:

      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.

  3. Adriana Reed says:

    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 says:

      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.

  4. Barbara Grubb says:

    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 says:

      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: https://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.

  5. Marilyn says:

    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 says:

      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.

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