The Pros and Cons of Connecting with Fellow IPF Patients

The Pros and Cons of Connecting with Fellow IPF Patients
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Since I was diagnosed with idiopathic pulmonary fibrosis (IPF) in April 2016, I have enjoyed connecting with other patients living with this life-threatening lung disease. For the most part, hearing others’ stories has given me comfort, hope, and encouragement. I believe that the benefits of connecting with my fellow patients far outweigh the disadvantages. However, it is important to acknowledge that there can be downsides as well.

This past weekend I was away with my cousins. We were part of a group, which included other women I hadn’t previously met. Everyone was kind, supportive, and very chatty. Friendships formed quickly. I was sitting with a group that included a very talkative older lady who sometimes distracted me from my tasks. Although I had to put my headphones on, I didn’t mind because she meant well and just wanted someone to listen to her.

However, I soon realized we had more in common than I had guessed at first. She is a caregiver of a family member who also has IPF. We discovered this commonality when she asked why I was wearing supplemental oxygen. Unfortunately, establishing this connection meant she gravitated toward me for most of the weekend and talked about her family member who is in end-stage lung disease. While I wanted to support her, it was too hard for me to hear about what I will eventually face as an IPF patient.

While the benefits of speaking with others about my experience far outweigh the negative effects, hearing about this woman’s family member left me feeling very vulnerable, upset, and anxious. I’m not blissfully unaware or naïve about the reality of this disease. However, I cope best by not thinking about what end-stage lung failure will be like.

Based on my experience, the following are some reasons why connecting with fellow IFP patients can be tough:

  • Sometimes I want a break: IPF already consumes so much of my daily life that sometimes I need a break from it. Unfortunately, this doesn’t happen as often as it used to because my disease is no longer invisible when I require my supplemental oxygen. People are naturally curious because it is unusual for young adults to wear oxygen.
  • I don’t consider myself “brave” or “courageous”: When I share my story with strangers, they often comment on how brave, strong, or courageous I am. My thought in response to their remarks is: What choice do I have? I consider myself to be doing the best I can with what I’ve been dealt.
  • Anxiety and fear: Connecting with others can help me to process how unfair and cruel this disease is. I am aware of what it is ultimately going to cost me and I process that in my own way. However, hearing about the difficulties that others have with IPF (especially near the end) is very anxiety-inducing for me.
  • Everyone’s disease progression is different: While I appreciate being able to connect with others and discuss medication side effects and symptom management, I realize everyone’s story is different. For example, I know many patients who have had IPF for more than five years and don’t need supplemental oxygen, whereas I needed it within six months of my diagnosis. Sometimes hearing about other patients’ rapid progression scares me.

Do you believe that connecting with other IPF/PF patients has negative aspects? If so, what are they? 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.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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6 comments

  1. Kenneth E Overby says:

    I believe that I have some information that could help patients with Pulmonary Fibrosis and Pulmonary Hypertension. May I share it without being accused of trying to be a doctor? It basically addresses the importance of being proactive and providing doctors with good input so they will give a more correct prognosis.

    • Charlene Marshall says:

      Hi Kenneth,

      Thanks for reaching out! Sure, you’re always welcome to share details for informational purposes only as long as we’re/your not endorsing anything specifically as it might not work for everyone. However, if you’ve found something potentially helpful for the IPF community, by all means, please feel free to share. Sounds good, and thank you for checking 🙂

      Warm regards,
      Charlene.

  2. Eileen says:

    Charlene, I agree with your view on appreciating my IPF friends but needing to have balance. Sometimes I feel myself getting too absorbed in IPF conversations. his disease can affect us differently and sometimes i have to cull out what doesn’t apply to me and I find myself sometimes getting anxious and out of breath. I really enjoy having normal conversations.
    I have a special IPF friend who lives near me and we support each other but also enjoy sharing other aspects of our lives. We have things in common other than IPF and plus our husbands enjoy our occasional outings too.
    I treasure all my IPF acquaintances but sometimes I need a break. Now I feel a little guilty for saying that.

    • Charlene Marshall says:

      Hi Eileen,

      It is so nice to hear from you, I think about you often! Thanks for reaching out and as always, for reading my columns. This was a tough column to write for me as we always need people in our lives, but my one experience I had with this individual was really not helpful for me so I thought I’d document it in case others can relate. I definitely agree about the need to not be too absorbed in IPF conversations! While they are usually helpful, sometimes it can become overwhelming quickly, as my conversation did with this woman about her husband. It really scared me! Normal conversations (that aren’t about my health) are so valued, and make me feel like a person first vs. a patient.

      Please don’t feel guilty saying that, I can totally relate and appreciate what you’re saying. It is important because we’re still people first, and our disease is second to so many other great / unique things about each of us. I think all we’re asking is to sometimes have those things trump the conversation, since IPF takes up so much of our time already. Your comments really resonate with me, thank you for that 🙂

      Charlene.

  3. Geoffrey Hewitt says:

    support groups especially with patients at all phases of disease are really helpful expelling the whole course to others; this past September I celebrated 7 years post transplant from Columbia University Hospital; every day I wake up and open eyes is a blessing not taken lightly at all

    • Charlene Marshall says:

      Hi Geoff,

      Thanks so much for writing and reading my columns – congratulations on your 7 years post transplant!!! That is absolutely amazing! I agree, support groups with the right population of people can really be helpful. I’m working on an initiative through BioNews to try and get an online group going for this very reason, if we have the resources that warrant it, for the people who aren’t close to attending one in person. Glad you shared your thoughts and am glad to hear support groups have been helpful for you! 🙂

      Cheers,
      Charlene.

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