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  • Are You More Sensitive Since Your PF Diagnosis?

    Posted by Charlene Marshall on June 18, 2018 at 9:03 pm

    I know in the past I’ve written about how my emotions can feel out of control since my diagnosis of idiopathic pulmonary fibrosis (IPF) in early 2016. However, in past columns or forum topics, usually I write about how they feel out of control in response to something that has happened: bad news, a crappy medical appointment, medication change or a new symptom of this disease are some examples.

    I don’t think I’ve ever written about feeling increasingly sensitive or emotionally heightened on a regular basis since being diagnosed with IPF.

    I am thankful to have never really dealt with anxiety or depression growing up. It has only been in recent years that I’ve witnessed their debilitating effects on others as I watch close friends and family members deal with anxiety or depression. As a result of not experiencing these things myself, I cannot say for certain if my heightened emotions in response to what others say or do is due to anxiety, or if I am simply increasingly sensitive to others. I know the high-doses of steroids that I am on can play a role in this too.

    Sometimes when others do or say something (or don’t say something for that matter) I can get so angry with them. My anger is not projected, and most often it is not external anger either but internally I get very upset and mad, replaying what they said or did over and over in my mind. I can usually move past it with a little time (which is why I don’t believe it is anxiety, since I don’t fixate on what happened) alone and resume our relationship as if nothing happened. However, the brief period of time when I feel hurt, sad or angry at the person who may have (likely) unintentionally upset me is hard to deal with. I don’t remember ever experiencing this in the past: a sudden internal burst of frustration with someone based on what they might have done or said in a certain tone.

    I can only chalk this up to being increasingly sensitive to others right now, or emotionally heightened as a result of the constant threat of my lung disease. I don’t feel anxious on a regular basis (thankfully) and usually am fairly happy and content with my life and all the wonderful people in it. As a result, I am struggling to understand why  I can get so internally worked up when someone does something that they likely don’t even see as a big deal, and yet, it can tear me up inside.

    Are you increasingly sensitive to the words or actions of others since your diagnosis of PF/IPF? 

    If so, does this happen for you on a regular basis and how you subdue it? 

    Thank you in advance for sharing.

    Charlene Marshall replied 6 years ago 3 Members · 4 Replies
  • 4 Replies
  • Mary Rupert Conyers

    June 19, 2018 at 1:37 pm

    I have never had a problem with depression, but more and more I find myself avoiding conversations with friends. It only takes a little talking to make me hoarse. I am in my third month of taking Esbreit and learned the hard way that avoiding sun exposure meant absolutely no sun at all. After only a few minutes horrible itching and a rash that lasts and lasts make for a lot of misery. I am afraid the new feelings that I am experiencing are depression. I am trying not to cut myself off from friends but it is a battle. Is this a common problem with moderate IPF and Esbreit?

    • Charlene Marshall

      June 21, 2018 at 8:49 pm

      Hi Mary,

      Thank you so much for contributing to this very important topic thread. I appreciate your willingness to share, as I know this isn’t an easy topic to be discussed.

      I am similar to you it sounds, in that, I find conversations with friends tough. Not only do I become short of breath sometimes (and feel a bit embarrassed as a result of doing so) but I also sometimes find that what they are complaining of, or upset over seems so trivial. Does that sound terrible of me to say? I am easily frustrated when people complain about things that in the grand scheme of life, as we know it, just don’t matter. In your experience, when you say hoarse, do you mean you struggle physically in conversation?

      In terms of the Esbriet questions, I am unfortunately not able to be super helpful because I am on OFEV. I do limit sun exposure just due to other medications though, and I do know some wonderful members of this forum who have experienced terrible reactions to Esbriet. Not in response to sun exposure, but just from taking the drug itself. Yours sounds as though it is in response to the sun exposure, or just in general you experience these unpleasant symptoms.

      It is a battle, you are correct, in terms of maintaining a social existence while living with IPF. It is important to speak with your medical professionals about this concern, if you’re worried about experiencing depression. I think this is so common, and somewhat expected when facing a disease like ours. Please know you aren’t alone in feeling this way, I am sure many of us on these forums can relate.

      Take good care, and please reach out if you need anything.
      Kind regards,

  • Sheila Blanchard

    June 19, 2018 at 2:01 pm

    Hi Charlene, I find that I am also emotional when someone says something mainly it’s my daughter,when I wonder if some of my symptoms that I feel is related to IPF.she always says I don’t have to think it’s theIPF, says it could be my Diabetes and now that I have severe sleep apnea and once I get the CPAP or Bpap I will feel less out of breath and have more energy. I also feel very depressed and alone.I always had a pet when I was alone to keep me company, now I am by myself all day no cat, no car to be able to go out sorry Sometimes I feel sorry for myself, which I shouldn’t there are a lot with a lot less than I, and are much worse.

    • Charlene Marshall

      June 21, 2018 at 8:54 pm

      Hi Sheila,

      Thanks as always for getting in touch, it is lovely to hear from you, although I can understand why you’re having a tough time. Please be gentle with yourself – yes, others may be “much worse” than you but I think it is important not to discount that our situation still stinks too!

      I am definitely more emotional in response to things people say as well, and this is hard because their intentions are usually good. However, they cannot understand what I am going through so sometimes their tone or words may come across me wrong, and it triggers an emotional reaction within me.

      I suppose your daughter is right, when you’re experiencing symptoms, it could be one of the other ailments you deal with but it might also be IPF, as you mentioned. I certainly don’t think there is any harm in wondering or contemplating this; regardless of the cause of it, it still sucks that you endure the symptoms at all, right? Hopefully your daughter can find some additional compassion in her comments (even if she already tries to be) and understand that you’re just doing the best you can. There is no rulebook when dealing with IPF….

      Hang in there, and know that we’re here for you Sheila. You’re among friends on our forum!
      Sending you hugs.


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