Living with IPF and Navigating the Changes

Living with IPF and Navigating the Changes

younger than 30

Living with any life-threatening illness is difficult and brings many changes, both to the patient and her family. Following my diagnosis of idiopathic pulmonary fibrosis (IPF) in early 2016, my doctor talked about the physical changes I should expect. What the doctor didn’t mention were the other — nonphysical — changes that I would endure while living with a life-threatening illness as a young adult.

I clearly remember that conversation with my physician — it is one that will never leave me. He said that he wasn’t sure how quickly things would change for me physically. A diagnosis with IPF as a young adult is rare, and my doctor explained that the disease could remain unchanged for several years or it could progress quickly. Unfortunately, he was right about the latter. However, despite this progression, I have found the physical changes easier to navigate than the other changes in my life.

It’s unclear to me which member of the medical team is responsible for talking with a patient about the nonphysical changes that a life-threatening illness can bring. Perhaps it is a nurse, a social worker, a transplant team member or a therapist. Maybe it’s not the job of a medical team member at all and it’s up to the patient to figure out as they learn to live with their disease.

The Pulmonary Fibrosis News forums are a place to connect with other patients, share tips and talk about the latest research. Check them out today!

Following are some of the biggest changes I have experienced since my diagnosis:

  • My career and how much I am invested in it: I used to value higher education, continuous learning, and professional development as ways to further my career. Since my IPF diagnosis, I am no longer interested in this further learning. It’s sufficient for me to go to work each day, do a good job, and then go home. Not long ago, I fought to return to work just six weeks after major surgery. Now, I can’t imagine returning to work so early and jeopardizing my recovery. It sounds cliché, but any career is merely a way to make a living — everyone is dispensable no matter what job they do. No one should prioritize work over his or her physical or mental health.
  • My hobbies: Living with a lung disease has meant giving up most physical activities, including hockey and running, which I loved. At first, I found this difficult to accept. However, over time I swapped physical activities for quieter, more creative hobbies — and I am thankful for the time to explore new hobbies that make me as happy as playing sports did.
  • Friendships: When a chronic illness is “introduced” into a friendship, it can really change things. Living with IPF has helped me to realize who my true friends are and who will stick around through the tough times. My current friendships have changed, and I now understand what I want in future friendships, too. I want to find friends who are authentic and honest, and who have a genuine interest in spending time with me despite my physical limitations.
  • What I value and cherish: It’s important to identify what is meaningful to you and what brings you joy. I’m focusing on enjoying the things that make me happiest. On this journey, I’ve realized how unimportant materialistic things are; for example, a $30 watch and a $300 watch tell the same time. I cherish quality time spent with family and friends now, and I’m not sure I would have appreciated this simple pleasure so early in my life if it weren’t for my IPF diagnosis.

What are some of the most significant changes you’ve experienced since your IPF/PF diagnosis? Continue this discussion in our PF forums.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

8 comments

    • Charlene Marshall says:

      Hi Rachel,

      Thanks for reading my columns and for getting in touch via the comments. I love hearing from others, although I hate that it is PF that brings us all together! Sorry your family is treating you no different despite your diagnosis. Sometimes (and I’m just playing devils advocate here) it takes them awhile to process the news that their loved one has a life-threatening illness, and they’re in disbelief a bit. Perhaps they haven’t accepted your diagnosis yet, or maybe they aren’t sure how to help you? This was my experience with my family at first and it was very tough. Some of my family members still don’t treat me any different and I now require supplemental oxygen to breathe. Not sure if this helps at all? It might be worth a frank conversation with them about what you need so they know how to help and/or what to expect as your illness progresses.

      Goodluck!
      Charlene.

      • Julian Arizola says:

        I really liked what you wrote about friendships. There is a certain amount of strain on some friendships. Some seem to fade away. Others keep up with you and ask sincerely how are things going. I try not to judge , and try to remember that the friendship that matters most is the one I have with myself. It will be me who has to do the work of staying positive. It’s not something I can do all the time by myself, and at those times when I need a boost my wife , family and the friends who do stay in contact will lift me up . Thank you for this column . I found out I had IPF March of 2018. It was a surprise for me. Up until then I didn’t notice any symptoms .

        • Charlene Marshall says:

          Hi Julian,

          Thank you so much for reading my column and for reaching out via the comments; I always love hearing from readers, although I certainly wish it wasn’t this cruel disease that brings us all together. I’m really glad this column and topic about friendships resonated with you; these things can become quite complicated when a chronic illness is introduced and unfortunately, there is no real way of knowing how to navigate them. Therefore, when things seem overwhelming with others and/or my expectations and hopes from others are not met, I also tend to turn inwards. I like how you mentioned the most important friendship is the one you have with yourself, and staying positive: this is so important to remember! So glad to hear your wife, friends and family who stay in contact are there to boost you up, this is wonderful news. Hang in there and please feel free to write anytime!

          Warm regards,
          Charlene.

    • Charlene Marshall says:

      Hi Vicki,

      Sorry to hear that, but thanks for reaching out and connecting with us! Are you part of our PF forums yet? There are a lot of wonderful people on there, including others who are caring for a spouse with IPF. If you want to join (no pressure, of course) the link is: https://pulmonaryfibrosisnews.com/forums/ take care and feel free to write us anytime. Best wishes to your husband!

      Charlene.

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