Pulmonary Fibrosis News Forums Forums PF Communities PF Life: Young Adults Helping Others Understand the Emotional Toll of Pulmonary Fibrosis.

  • Helping Others Understand the Emotional Toll of Pulmonary Fibrosis.

    Posted by Charlene Marshall on May 20, 2018 at 1:42 pm

    As a young adult living with idiopathic pulmonary fibrosis (IPF), one of the hardest things for me to accept was no longer being able to maintain the hectic schedule that I once had. I never used to put myself first, which is why I’d often burn out with such a hectic schedule, but after a few days of rest I’d always bounce. I found so much joy in helping others through volunteering my time, helping friends with tasks (such as moving, or celebrating milestones) or attending and playing different sporting events.

    Since my diagnosis, all of that has been halted and I’ve been forced to put myself first because I can’t rebound from exhaustion the way I did before I got sick. If I don’t put my health needs first, the consequence can be detrimental for me and this is very hard to accept. It feels as though I cannot help my friends in the same ways that I could before my diagnosis.

    Not that long ago I wrote a column about this, which can be found here: https://pulmonaryfibrosisnews.com/2017/08/02/pf-patient-laments-being-unable-to-be-there-for-friends-as-much-as-before/

    It is an apology to my friends who likely have noticed a difference in my ability to be there for them, and my inability to help out with things as often as I used to. None of my friends would blame me for this, they are all incredibly understanding about my physical difficulties and fatigue due to my illness, but it hurts nonetheless. Together we focus on what I can do to help them, or on social events that I can participate in despite my disease. Putting my illness first is hard for me, but unfortunately it is important now as my lungs continue to decline.

    Understanding my physical limitations is easy for others to understand, however, the emotional impact is harder since it is invisible. Due to my illness, I fear that sometimes I don’t have the emotional reserve to help others through their difficulties and I don’t know how to explain this to friends who turn to me for support. Do you have any suggestions on how I can go about helping others understand this invisible aspect of my illness? 

    Charlene Marshall replied 5 years, 10 months ago 2 Members · 2 Replies
  • 2 Replies
  • ken-room

    Member
    May 22, 2018 at 5:21 pm

    Hi Charlene,
    Not to put too fine a word to it, you are amazing. Your wisdom, kind thoughts and encouragement to us will is phenomenal. I, and I know that many of us afflicted by this illness, gain much comfort from your numerous articles.
    I cannot see what more you can do than to carry on as you are. I’ve no wish to embarrass you but just to thank you for all your help. We all love you.
    Ken.

  • Charlene Marshall

    Member
    May 23, 2018 at 12:16 pm

    Hi Ken,

    I am so very touched and appreciative of your message, thank you so much for your kind words. Today has been a bit of a tough day for me, and being able to sign onto our special community via the forums to read this has just changed my day completely (for the better). I think I will also keep this message in my memory box, that I pull out when I need a bit of lifting … this disease can be so darn tough!

    I am honoured to be able to bring some comfort through my writing, and am so thankful to have an audience who reads my columns as they are very therapeutic for me as well. I’ve gained a lot of comfort from “knowing” people on these forums, and am grateful for this platform to connect with others who really get it.

    Thank you again Ken, for your kind words and changing my attitude about today. Sending so much love to everyone on these forums.

    Kindest regards,
    Charlene

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