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    • #32028

      Hi Forum Family,

      This week has been a tough one for me, and I’m wondering: have you ever experienced survivor’s guilt when a fellow patient with IPF dies before you but was diagnosed after you?

      I’m in the midst of publishing a column about this, but a friend of mine lost her Mom last week to IPF and the funeral was this past weekend. Her Mom and I corresponded a lot about the challenges of living with a terminal lung condition, as no one in the small town we are both from could relate to our struggles. The funeral hit me hard, and I found myself having to navigate some difficult emotions and questions. For example, many of the people at the funeral knew that I have the same lung disease as my friend’s Mom. When they asked me how I’ve been doing or feeling, I was reluctant to share that I feel lucky because my disease is relatively stable (for now), because their loved one just died from the same illness. The emotions and feelings I had at the funeral really complicated how I felt leading up to the services and throughout the day, and I think will complicate my grief as well. 

      How do you cope with the funeral of a fellow IPF patient, especially if you attend their services in person?

      Do you have any tips to share?

    • #32042
      Fred Schick

      I talked to the family members about the deceased, as a person, and not as IPF patient/victim. I have seen several of my IPF peers die and have ceased counting because that depresses me.  It may be difficult to be an IPF patient for whom the disease is slowly progressing but we are all different and some more fortunate than others.  Hope this helps.


      Fred Schick

      • #32062

        Thanks for sharing your thoughts, Fred. I agree – so important to speak with the family members about the person who died as a person-first, not victim of this disease. It’s hard when we’re living with the same disease I find.
        Take care,

    • #32048
      Christie Patient

      I’m so sorry for your loss Charlene. This grief sounds really complicated and painful. I’m so sorry you’re wrestling with the particular complexities of this grief in the public eye… I know that small-town energy can make it really difficult to go through private struggles. People have questions you can’t answer, or they can’t ask but you see it in their faces anyway. I can imagine how that might feel. I would try to think of just what your friend’s mom would say. How would she want you to handle this? If it’s too hard, maybe giving yourself some space and boundaries with people in your community would be a good idea. But you know all this. As always, here to listen if you need a friend.


      • #32063

        Thanks for your kind words and suggestions @christie-patient. Always lovely to hear from you and your perspective. I didn’t realize that is what was happening; grieving in the public eye of a small community but you’ve absolutely nailed it. I appreciate your thoughts and YOU, thanks for writing.

    • #32067
      Wendy Dirks

      I’m so sorry you have had to deal with this, Char. It sounds incredibly difficult. While I was in hospital with pneumonia in March, my sister-in-law was in hospital with lung cancer. She died and I didn’t and  I realised I felt some survivor’s guilt. I couldn’t go to the funeral to support my husband because I don’t have enough portable oxygen to be out that long. As it happened, my husband and his daughter’s were the only people at the funeral wearing masks. However, this did inspire me to read a book that I had purchased but avoided reading called, “With the End in Mind: How to Live and Die Well,” by palliative care consultant Kathryn Mannix. It was an excellent choice as it demystifies death and makes the process seem to be what it is – part of life. She has written another book that looks like it might be helpful to readers of the forums called, “Listen: How to Find the Words for Tender Conversations.” I hope you can give yourself all the self compassion and care you need.

      • #32098
        Christie Patient

        Wow @wendy-dirks I am so sorry for your loss as well. My cousin passed from lung cancer earlier in the year that my mom got really sick. She did see him on his final day (I couldn’t make it in time), and we all went to his funeral together. I wonder what was going through her mind on those days. I didn’t know then that she had been diagnosed with IPF, and was drowning in my own grief so wasn’t much of a support for her. I can imagine the survivor’s guilt coming on strong in both yours and Charlene’s recent losses. Sending my love to you both as you grieve. Thank you for the book recommendations. I feel like both might be relevant and helpful for a lot of people here, including caregivers.

      • #32194

        Thank you for sharing this experience @wendy-dirks, though I’m so sorry you had to navigate that as well, and sorry for your loss. I appreciate hearing from others’ who understand the deep self-compassion and grace that its taking to cope with this personal loss. I will add those books to my reading list – which tends to be really long these days – but a topic that is certainly relatable. Thank you for taking the time to share and I hope you’re managing to stay out of hospital and as well as possible. I think of you often!

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