This topic contains 2 replies, has 2 voices, and was last updated by  Charlene Marshall 4 months ago.

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  • #17934
     Charlene Marshall 
    Keymaster

    Despite being nearly three years into my journey with idiopathic pulmonary fibrosis (IPF), I still sometimes feel numb when thinking about the fact that I have a life-threatening illness. Believe me, the physical effects are there, but the mental struggle and verbalizing my emotions about this disease are sometimes, arguably more difficult to deal with.

    It really is difficult for me to put into words what it is like to live with IPF as a young adult. There isn’t one common emotion or feeling that captures all of it, all the time. For example, I have good days and bad days but I can’t say that one emotion, ie. sadness trumps all others because despite the difficulties of IPF; I still have a lot of really good days. However, recently I came across an emotion or state of feeling that seemed to touch on many aspects of my life with IPF. Have you ever heard of something called chronic sorrow?

    I recently published a Pulmonary Fibrosis News column on the topic of chronic sorrow for those who might be interested in learning more about it. The most resonate piece of information on chronic sorrow is that it is about cyclical emotions, especially when there is no predictable end to a chronic health issue. IPF: check!

    Reading more about this grieving response to a chronic illness helped me also learn how my parents might feel about their thirty-something year old daughter having a terminal illness and the possibility of them outliving me. Still saying that sometimes takes my breath away! That said, it has helped increase my empathy for how they are coping with all of this, and the article on chronic sorrow helped me understand a bit more about why my relationship was rocky with my parents at first. None of us know how to cope with introducing a life-threatening lung disease in to my life.

    Might there be anyone in your life, such as a caregiver, experiencing chronic sorrow?

    Did the article on PF News resonate with you as a patient living with IPF/PF?

  • #18425
     Thom 
    Participant

    Hello Charlene,

    Although it’s difficult for me to identify what you feel with your IPF, I do understand.  30 years ago I had a TBI the result of a car accident.  Following the injury and 2 brain ops, I became a different person.  One that I did not know or recognize.  I was scared of leaving my wife and kids behind.  My parents and siblings I’m sure suspected I was having a breakdown.  I did keep it together through therapy.  I was so against going, but 30 years later I’m still here.  Once again I’m challenged with unknown territory, except now I’m 70, and see things a different way.

    Talking is the best thing we can all do.  I understand your sorrow and sadness.  I just wish I had something more to say.

    You have good people here, and you hold us together.

    Thom

  • #18445
     Charlene Marshall 
    Keymaster

    Hi Thom,

    Wow, thank you so much for your kind words and sharing a bit of your story with me. I think part of us, regardless of age, understands what one another is going through as IPF certainly isn’t pleasant for anyone. This cruel disease knows no age limits! It is hard to know the right thing to do in the moment, isn’t it? I am so lucky to be surrounded by good people who help me navigate the periods of sometimes-overwhelming unknowns. I am so thankful for the members on this forum who keep me going! I also appreciate hearing about your accident, although I am really sorry to hear that happened to you. I can’t imagine how difficult that was for you and your family.

    Truly having this platform of people who truly understand what it is like to live with IPF is so helpful, even when sometimes there just aren’t good words to say… thanks for being part of that.

    Take good care and feel free to reach out anytime.
    Regards,
    Charlene.

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