This topic contains 0 replies, has 1 voice, and was last updated by  Charlene Marshall 4 months, 3 weeks ago.

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     Charlene Marshall 

    I spent this weekend away and for the most part it was pure bliss. As many of you know, I thoroughly enjoy different types of crafting projects including: card-making, scrapbooking, do-it-yourself (DIY) home decor, painting and more! These things are very therapeutic for me, they don’t take up a lot of physical energy. I also like to think of these activities as capturing memories and moments for friends and family while I still can. I was at a retreat this weekend focused solely on scrapbooking… and I loved it! We woke up early in the morning and crafted until late in the evening while enjoying laughs, drinks, too much food and very little sleep. It’ll take me all week to catch up from it, but it was worth it.

    Something unexpected happened at the retreat this weekend, and I’d like to share it with you to obtain your thoughts. Normally, I am grateful to connect with others who know what idiopathic pulmonary fibrosis (IPF) is, especially since my own diagnosis in early 2016. That said, this weekend I met an older woman who’s husband is living with IPF and our conversation quickly became too much for me.

    I was wearing my oxygen (as I usually am these days…) which naturally struck up a conversation when this woman asked why I had it as a young adult. She wasn’t very polite in all of her questioning, and she was quite insensitive in terms of how much she asked me. I could have stopped the conversation, but we were sitting together for the weekend and I didn’t want things to become awkward. Not only did I find out her husband has IPF, but that he is in end-stage lung disease and she told me far too much about him and his situation that I quickly was left feeling vulnerable, angry and sad. This is not how I wanted to feel during a weekend away.

    Finally on the second day of this woman completely gravitating to me and having no-filter when it came to constantly talking about IPF; my cousin stepped in and told her to please stop sharing such detailed information about her husband’s illness and death, which the woman says is coming “very soon”. My cousin knew it was bothering me, and I was trying to be polite by listening but it just became so overwhelming and quite frankly, it was scaring me. It was as though she was using this weekend and our mutual knowledge of this disease to “verbal vomit” all over me. This really got me thinking:

    Do you find connecting with others who have IPF or who are caring for someone living with IPF helpful or hindering?

    I realize this woman may have needed our conversation as an outlet, but she was very insensitive to how the dramatic details of her husbands story might impact me. I love connecting with everyone on this forum because there is a mutual respect and understanding that seems to exist here. This was not the case this weekend.

    Have you ever had this happen to you? If so, did you address it with the person?

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