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    • #20192

      In previous forum posts we’ve often talked about the impact that idiopathic pulmonary fibrosis (IPF) has on both us as the patients, along with our caregivers, friends and family members. About a year ago, I wrote a column on surviving IPF and how the impact of this disease is far more than the physical; it has a significant emotional and mental impact as well.

      Unfortunately, the cliche is often true when it comes to hardships in our lives and how they bring out the true colours of friends and family members. Some choose to support us, and others (even the ones we were once closest to) stray away. I choose to believe this happens unintentionally, that friends who shy away from us after the diagnosis of a life-threatening illness like IPF don’t do it to hurt us. However, the reality is that the impact still hurts!

      Recently, I read an article about this and how the patient who had this happen him, then unintentionally shy’d away from another friend who was diagnosed with cancer. It was a really interesting read to see both perspectives! The article is from The Philadelphia Inquirer and is called, After my cancer diagnosis, some friends abandoned me. Then I did the same thing. Here’s why. Naturally, the title intrigued me, but you can read the full article HERE.

       

      Can you relate to this topic as a patient living with IPF/PF? 

      What are your thoughts on the article, and how the author seemingly “justified” the abandonment behavior, although it was unintentional? 

       

      Would love to hear from you regarding this piece and how it pertains to your own experience. I know I sure can relate!

    • #20235
      Linda Williams
      Participant

      Hi Charlene.  I.have noticed that I don’t hear from my friends as often either. But 2018 when I was diagnosed with a very busy year. Also got diagnosed with MGUS after labwork & bone marrow biopsy. At first it was questioned if I had a non-hodgkin’s lymphoma, Waldenstrum’s. But bone marrow showed numbers if chains of protein not high enough to have to treat at that stage so I get labwork every 3 months, hoping to get that changed to every 6 months soon. Between packing (a friend from TX came and helped me pack), selling house, selling many items as downsizing, and moving to a Sr Community Independent Living, it was a busy yr. Also testing for IPF, scans and bronchoscopy with biopsy, Dr’s visits, etc. It was a very busy year when I was quite fatigued. My son came from NC to get me moved.  Couldn’t have done it without him and TX friend!  A local friend whom I spoke with today on phone, at first referred to my cough as being from allergies, so I had to fill her in.  Still hear from her but not invited to go out very often anymore with our group.  She is on meds for fighting breast cancer now for 12+ yrs so I think she is somewhat afraid my cough is something she might get.  I cannot blame her, although I know better.  Also our ages in 70’s slows us down a bit.  I text daily with a newer friend (5 yrs) and occasionally go out with her.  Have activities can do here at Sr Community but none of them really understand why I am not more active in some of activities (do not do mornings well).  Nor my cough – afraid of getting something.  I really get tired of having to say, I have a lung condition you can’t get from me or something to that effect.   By the way, I had been looking for a Sr Community to move too for about 2-3 yrs. One I liked with my own space, garage, patio, w/d, not buildings like stacked apartments and one I felt I could afford.  I did not move due to illness.  But that move was 18 miles away from my previous town and my friends, which may also affect how often I see them.

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