October 11, 2018 at 8:52 am #14817Charlene MarshallKeymaster
Living with any life-threatening illness is difficult and brings with it many changes, both to the patient and their families. Unfortunately, so many of us on this forum have likely experienced this first hand and there is no guide or rulebook available to help us cope with all the changes pulmonary fibrosis (PF) forces upon us. Following my diagnosis of IPF in early 2016, I remember the doctor talking about how much would change for me physically. What that doctor unintentionally neglected to share was all the other changes, besides the physical things, that I would endure as a result of living with a life-threatening lung disease as a young adult.
While some of these changes have happened quickly, others have been more gradual over time but regardless of when they happened; so much has changed for me as a result of IPF. Below are just a few examples of some major changes my illness has caused, a change in:
- Friendships: it might seem strange to some, but when a chronic illness is “introduced” into a friendship, it can really change things. Living with IPF has helped me realize who my true friends are, and who is going to stick around through the tough times ahead. Not only has it changed my current friendships, living with a life-threatening illness also helps me realize what I want in future friendships as well. That includes things like finding people who are authentic, honest, and who have a genuine interest in spending time with me even when I am physically limited in what I can do.
- Hobbies: living with a lung disease means giving up most physical activities, including the sports that I once loved such as hockey and running. This was really hard for me to accept at first, especially since it was how I stayed active and it was a healthy way to burn off the stress of the day. However, with time, the difficulty of switching hobbies from physical activities to quieter, more creative ones has become a lot easier and I am thankful for time to explore new hobbies that make me equally happy.
- What I value and cherish: this also sounds like a cliché, but following a diagnosis of a life-threatening illness, it feels important to identify what is meaningful to you or brings you joy. This should be true for even those without a chronic illness, but I have spent time thinking about what makes me happiest in this life and making changes to focus on those things. One of the biggest things I’ve realized throughout this journey is just how unimportant materialistic things are. For example, a thirty-dollar watch and a three hundred dollar watch both tell the same time. Quality time with family and friends is something I really cherish now, and I’m not sure I would have experienced this change so early in my life if it weren’t for my diagnosis of IPF.
What are some of the non-physical changes you’ve had to endure since your IPF/PF diagnosis?
October 18, 2018 at 5:51 pm #14910Brenda-Hal SiskParticipant
Yes, I’ve experienced many changes as well. I still have quite a few friends, but many times I feel like they don’t really know what to do with me. They are very loving and caring and watch out for me when we are together, but I believe they are very unsure of what to do, what to say, etc. My closest friend, my best friend, also has a chronic illness. She didn’t at the time we met, over 5 years ago, but has since been diagnosed with an immune deficiency disease. We met just before my diagnosis. She’s the one person who gets me. I praise God for putting us together. We are closer than sisters if that is possible. My activities have changed and my hobbies have been reduced to knitting, which I absolutely love. So does my best friend. This is a big plus. I used to go on at least one short term mission trip each year, that has stopped. It’s difficult to travel with O2 in third world countries. My husband just asked me about going to our grandson’s football game tomorrow evening. I can’t tell him yes or no until tomorrow to see if I feel up to it. That really stinks! Family is what I value most in this life. It’s hard when you don’t feel up to attending family functions, but I do the best I can and most all are very understanding about it.
Praying these transitions become easier to work through for all of us and for our families and friends.
Blessings to all,
October 19, 2018 at 7:23 am #14913Charlene MarshallKeymaster
Thanks so much for getting in touch and sharing a bit about your experience with this topic. It sure is a difficult one, isn’t it? When our friends want to be loving/caring and protective of us when we’re together, I find this even hard because it is a balance between being a friend and caregiver. One of my used-to-be really close friends voiced this once, that she wants to be my friend but not in a caregiving role. However, she’d always help me with tasks I needed (her natural way) so I didn’t know how to find that balance with or for her, so our friendship in my mind has kind of dissolved. I am so very glad to hear of the relationship with your closest friend being stronger than ever, that is so wonderful and I am very happy you have that support. That said, I wish you didn’t experience that ‘closeness’ as a result of a chronic illness, but I know as a result of both having a diagnosis you likely understand one another even more. This is wonderful to hear!
I am also glad you’re content or happy with your quieter hobbies, I completely understand this. I’d prefer to stay home on a weekend and do my crafting than go out with friends socially. It just takes us so much time to recover physically for those events, doesn’t it? It is nice to hear that your family is supportive and understanding of what you can and can no longer do, but kudos to you for trying!
Thinking of you and thanks so much for writing.
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