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    • #12780

      After being diagnosed with a life-threatening illness, such as idiopathic pulmonary fibrosis (IPF) it is not uncommon for patients to experience a variety of changes within themselves and those closest to them. It’s hard to quantify all the changes we might experience as patients with IPF, because this disease continually causes us to adapt and cope as it progresses over time.

      One of the most prominent changes that I believe I’ve noticed in myself, and others’ have noticed of me as well is my change from an extrovert to an introvert. Before my IPF diagnosis, I used to be extremely social and enjoyed large crowds of people or social events where there would be lots of people to talk to. This didn’t change for me immediately following my diagnosis, but it definitely has. I now really struggle in these situations, and value (and look forward to) being alone, in the quiet and comfort of my own home.

      Sadly, I have very little patience for a lot of things others’ do as well and this worries me. That being said, I hear from other patients living with IPF as well as many other people my age that this intolerance or impatience for people isn’t that uncommon. I wouldn’t say generally I am intolerant or impatient with people, however, I really struggle interacting with people who are negative, discouraging of others or are gossiping. We as patients living with IPF, know all too well how short life is so I struggle to engage with others when this is the topic of conversations (and sadly, that happens frequently). I believe this might be one of the reasons I’ve switched from being an extrovert to an introvert.

      Have you experienced this change (extrovert to introvert) since your PF/IPF diagnosis? If so, why do you think that is?

      What other significant changes would you say you’ve endured since your diagnosis? 
      Steroids aside, I think another significant change that IPF has caused within me is frequency of moodiness. However, I’ll save this topic for another forum post.

      As always, thanks for sharing!

    • #12806

      I’ve always been an outgoing person.  First to say hello, all that.  But now that I’m settled into this disease, I cherish the quiet.  It’s so opposite of my former way, yet I like it.  I still welcome visitors, but don’t want them to stay too long.  I don’t think it’s a bad thing because I enjoy it!  So I wholeheartedly stand and agree with you Charlotte.

      • #12831

        Hi Sandra,

        It is great to hear from you, thanks so much for contributing your thoughts to this thread! It’s nice to hear that others’ have experienced this change within themselves as well, as this has been a tough change for me to accept since my IPF diagnosis. Like you, I used to be the one to initiate conversation with others and now I appreciate quite times and moments. I used to chat in doctors waiting rooms, airport gates, etc and now my preference is to actually wear headphones or do work alone on my computer. It is a hard change to accept because this is also applicable with my friends and family. I enjoy having them around, but I hope they don’t stay too long because mentally I feel too tired to be “on” all the time. I also don’t mind being this way, now that I’ve accepted my diagnosis, because it gives me more quiet time. I just hope my friends and family understand, and don’t start disappearing because I don’t spend as much time with them as I once did. That is one of my greatest fears with this change!

        Thank you for sharing your experience with me, I am very grateful and glad to hear from you. I hope you’re doing well?

        Kind regards,

    • #12811
      Sheila Blanchard

      Hi Charlene, I find I agree with Sandra, I used to be outgoing but now not so much. I have three good friends which I still see but that’s about it. My daughter wants me to join a seniors club as I am by myself most days, but I not really interested.The only thing that I feel would help me is to have my cat back (I had to have her rehomed ) I had to give her up when I went to live with my daughter.  Sheila

      • #12832

        Hi Sheila,

        Thank you so much for contributing your thoughts to this thread. I am always so grateful for others’ sharing their experiences with me through responses on this forum!

        It sounds like this change (from extrovert to introvert) is a common one among those of us living with PF/IPF. I just sincerely hope that our friends and family members can understand this change and still want to spend time with us, even if it is not as frequent or as long as previously. I’m sure your daughter’s intentions are good, but it sounds like you might appreciate the time on your own? I certainly do so I don’t think I’d want to join any club or social group either. I think my heart would break if I had to re-home my furbabies, so I can’t imagine how you feel. Any chance your daughter would let you get another pet? They can be so therapeutic for us, can’t they?

        Thanks again for sharing your thoughts Sheila. Wishing you nothing but the very best.


    • #12861
      Ken Room

      Hi Charlene,
      As with all IPF sufferers, I have encountered numerous changes in my manner, thoughts and outlook since first being diagnosed. As you may recall, I’m 83 and would normally have put them down to my age but now I cannot be certain.

      Feeling constantly tired and weak limbed.
      Annoyed and frustrated at not being able to carry out the simplest of tasks.
      Loss of appetite and body weight.
      Previously very patient manner, now l feel unnecessarily irritated by the slightest inconvenience.
      As a lifelong lover of puzzles, I often find now that I give up too easily.
      Now very jumpy and react at the slightest sudden noise or movement.
      As at this moment, a general feeling of lethargy and boredom much of the time.

      I apologise if I am coming across as feeling sorry for myself. Far from it. It’s written in the hope that others will, in some way, find an understanding of their own situation. In spite of everything, I remain happy and well cared for.
      I just do not like feeling to be a burden to my loving family and friends.

      Bless you all.


      • #12882

        Hi Ken,

        It is great to hear from you, as always! Thanks for writing and contributing to this thread; I sense such an authentic and genuine response in all of your replies to us.

        This was a bit of a hard topic for me to write about, as I used to love the “extrovert” that I was and all the social venues I was part of. However, than has certainly changed since my IPF diagnosis, as you mentioned it has for you also. Although I wish it hadn’t, and I wish all of us weren’t dealing with this disease, I also find a great deal of comfort when others’ share their experiences and can relate to what I am saying/feeling.

        I feel as though many of the things you describe fit the changes I see within myself perfectly as well. They sure are hard to deal with, aren’t they? More specifically, the feelings of fatigue, frustration and annoyance are certainly what I experience and my impatience is beyond. I feel bad for others sometimes because I lose my patience so quickly. This is especially true in the car! Have you ever had a long hospital admission, where a procedure or test went array and/or was traumatic for you? This happened to me a couple of times, but one time was particularly bad last May (an acute exacerbation) and I actually have been diagnosed with medical-induced PTSD as a result. The reason I mention this is because I am also very jumpy and oftentimes upset at sudden, unexpected movements that alarm me. Might this be the case for you as well, possibly?

        Your comments do not sound as though you’re feeling sorry for yourself, and as you hoped, they were very helpful to me. I’m so glad you are loved and well-cared for, it sounds like you have a wonderful family and circle of friends. Sending much love and prayers always Ken!

        Warm regards,

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