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    • #15021

      Do you ever get frustrated following well-intended encouragement from others? I likely sound very ungrateful, and I don’t mean to be, so let me explain.

      I am very lucky to have some friends in my life who are always encouraging me through the tough stuff since being diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016. This “tough stuff” includes, but not limited to: long hospital admissions, painful procedures or exhausting rehabilitation programs. While I appreciate their encouragement, sometimes I find myself frustrated at what-seems-to-be a lack of acknowledgement about how hard these things are for me sometimes. I know the purpose of all of these difficult things is to help me get and stay well, and that the painful procedures are simply for doctors and nurses to know how to treat me most effectively. Therefore, I agree with how important these things are.

      What sometimes irritates me is when I am upset, tired or complaining about how difficult some of these things are; the response from friends sometimes feels insensitive. As an example, I recently needed an arterial blood gas (ABG) done and for those of you who’ve had one of these, you likely know how uncomfortable they are. I was caught up in my own self-pity party (which I hate to admit happens sometimes, but it does) and my friend asked if the ABG test was done. I said yes, and mentioned how painful it was. His response with a smile was “excellent, I am glad it’s done”. I wanted to rip his hair out! While I was also glad it’s done, and he was merely trying to encourage me to get through it; I was actually looking for a bit more compassion about how painful it was. This has also happened in similar scenarios after I’ve endured difficult procedures in my fight against IPF.

      Have you ever had this happen? Where people are encouraging you through something tough but maybe fail to acknowledge how difficult that procedure, admission, surgery, rehab, etc. was for you?

      Maybe it’s just me! I’m curious to hear from you.

    • #15105
      Brenda-Hal Sisk
      Participant

      Hi Charlene.  Yes those ABG tests are very painful.  You are not alone with your feelings. Unless people have walked in our shoes, they just really don’t know.  I find myself suppressing my feelings more and more around certain people, and then I used to just lose it when I was alone.  Now I stop, take a deep breath, well as deep as I can, and then pray for them.  My prayer usually is for God to open their hearts to hear what I truly need from them, not pity, but more compassion.  I pray they learn to not fill the “space” with a lot of words, but to put their thoughts and words into action and just be there for me.  And I pray for me, that I will eventually develop thicker skin when it comes to well meaning people and learn to lean more on Him, God, for my comfort, compassion & peace.  Crying and getting upset really doesn’t do me any good either since it all causes yet more coughing and frustration!  Oh what a vicious circle!

      Take care,

      Brenda

    • #15147

      Hi Brenda,

      Thank you so much for writing and your contribution to this topic – I felt a bit guilty sharing it because I know most people are well-intended, but sometimes their words hurt instead of help. I didn’t want to sound ungrateful for them either but I suspected this might be a topic other patients living with PF could relate to. I really appreciate your writing!

      Yes, I agree ABG tests really hurt and I’d be happy if I didn’t need another one of these for a really long time…

      You’re right about suppressing your feelings around others, I intentionally do this as well, especially those I don’t trust are authentic in their questioning about how I am and instead just want to move onto telling me how they are. It just seems easier this way, but then I lose it and become emotional on my own as well. You’re very right though that this can just be harder on us physically. Thanks for sharing your experience about what helps you most.

      Take care,
      Charlene.

    • #15154
      Sheila Blanchard
      Participant

      Hi Charlene,I know how you feel, although my Fibrosis seems to be progressing slowly (which I am thankful for thank God)there are some days where I really don’t feel very well like tightness in my chest or my breathing is not good, depression tiredness my daughter who is my caregiver says, Mum you are ok the tests you have taken show this,you are not dying.What do you answer to this? Maybe I just want some sympathy.I still miss having my little cat so maybe this is contributing to how I feel.

    • #15164

      Hi Sheila,

      I am really glad to hear your fibrosis is progressing slowly, this is really good news although I can relate to the days when we still feel unwell physically – especially chest tightness, or when our breathing isn’t very good. These are still the hard days to cope with, aren’t they? I’m sorry that is your daughter’s response, that must be hard to hear. While the tests may not show rapid progression, this is still an extremely difficult chronic illness to deal with, leaving us with scary symptoms. I think I’d be sensitive to her comments (even thought I’d likely want to lash back in response) but ask that she is a little more compassionate to your struggles, because even though you may not be dying (we all are dying eventually, even those without a chronic illness :)) it is still a really tough disease to navigate. What do you think her response would be to this? I don’t blame you for wanting a bit of sympathy, we all deserve that. Hang in there and write anytime!

      Charlene.

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