Managing Stress As a Patient with PF: A Collective Response

Managing Stress As a Patient with PF: A Collective Response

younger than 30

One of my favorite courses when preparing for a career in trauma, mental health, and children’s counseling was my training in narrative therapy. This type of therapy is less traditional than other well-known methods such as cognitive, behavioral, or psychodynamic therapies. Despite this, I have seen it work in practice many times, especially with young children. The focus of narrative therapy is on storytelling and separating the person from the problem, which then empowers clients to be in a better headspace to find a solution to whatever they are seeking therapy for.

An aspect of narrative therapy I enjoy working with most is called collective documents. As described by the Dulwich Centre, an international leader in narrative therapy based in Australia, collective documents richly describe the skills and knowledge of how groups, individuals, or communities are sustained during difficult times.

As a patient living with idiopathic pulmonary fibrosis (IPF), I am particularly interested in hearing from others about how they cope or manage their lives with IPF. The knowledge, skills, and ideas they bring as fellow patients far exceed what medical professionals advise, especially when it comes to living daily with this chronic lung condition.

I was lucky enough to study at the Dulwich Centre in 2015 and 2016, and while there, I learned a lot about the importance of collective documents. I was able to see clients respond positively to information shared by others facing a similar problem. They felt empowered and strengthened by fellow clients. This is why I find it so beneficial to reach out to other patients living with IPF when I struggle with a problem I’m not sure how to cope with. I would like to start being more intentional about creating collective documents about living with IPF, as I love the idea of creating something from the PF patient and for the PF patient.

Last week, I had a particularly bad Monday at work and ended up getting so upset about what happened that I made myself sick. In hindsight, I certainly didn’t need to get myself so upset, but it’s hard to see that in the moment, when everything feels awful.

My usual stress-relief strategies were ineffective, so I reached out to the Pulmonary Fibrosis News Forum community and asked how they deal with stress. As usual, these wonderful members were willing to share their methods for dealing with bad days as a result of IPF. I thought I’d share them with you, in hopes that this collective document, which is a work in progress, might help you during stressful times. Here are some of the ways other patients with IPF manage stress:

  • Give yourself permission to feel: It is important to allow ourselves to experience the full range of emotions that come with IPF, even if it’s in the form of a “pity party.” The key piece with this is ensuring we don’t get stuck in the negative emotions of living with IPF long term and have effective coping strategies to help us move past dark days.
  • Remember how loved you are: I was thankful this piece of advice was shared with me from a member of our forums. We are always trying our best to live with IPF, and it’s important to remember that we’re loved by others, even during our toughest moments. Whether that love comes from online friendships, family members, or spouses, etc., it is important to remember that someone out there loves you.
  • Engage in a mindless or therapeutic activity: Examples include crafting, puzzles, drawing, or painting. When engaging in any of these, our minds are fully focused on the task at hand, leaving little room to think about IPF and the effect it has on our lives. Personally, I love crafting, as it gives me somewhere else to focus my energy.
  • Connect with others: I understand that it is easy to feel vulnerable with IPF, and sometimes in that vulnerability, we don’t want to be around others. Handpick a small group of friends to be your “circle of support” and lean on them during tough times. I am so thankful for my friends who can see me at my worst and still love me despite it.
  • Distractions: I fear the day I will no longer be able to drive, as I often put my dog in the car and hit the road to help clear my mind. Other examples of distractions from IPF include spending time with friends and family or watching a movie.

How do you effectively deal with stress as a PF/IPF patient?

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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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4 comments

  1. Jerry Waxler says:

    Thanks for this article. I am very interested in narrative therapy but have found very little written on the subject. Your article came up in my google search for narrative therapy – I wonder if you could point me to some source material – like a well written book on the subject. My own passion for memoir and life story has been going on for a number of years, and formed the basis for my book Memoir Revolution. Now, I continue to search for strategies to apply the power of memoirs in the therapy office.

    Best wishes
    Jerry Waxler

    • Charlene Marshall says:

      Hi Jerry,

      Thanks so much for reading my column and getting in touch via the comments. When pursuing a masters in therapy, I chose Narrative Therapy as I loved the approach being non-blameful and collaborative when it comes to helping people through their problems. I am privileged to be able to use it in practice as well. Here is an excellent link to lots of credible narrative therapy articles, this is where I did some of my training as well in Australia: https://dulwichcentre.com.au/ have you visited here before? In the resource library on the site there are lots of really great books on the topic as well.

      Feel free to write any time, I also have a passion for Narrative therapy! My email is: [email protected]
      Take care,
      charlene.

  2. Elizabeth Forde. says:

    Was diagnosed last Xmas put on drug shrick the fibros in chest
    An to go on sun holiday soon,on OXOGEN on plane,
    Will sun affect my condition. ,do to aware I am going
    On holiday,,
    Thank you,
    Elizabeth,

    • Charlene Marshall says:

      Hi Elizabeth,

      Thanks for writing and getting in touch via the comments – sorry to hear of your PF diagnosis. The only thing I know for certain that I can advise is to be really careful in the sun if you are on either of the two anti-fibrotic medications, Esbriet or Ofev. Both make you more sensitive to the sun and burns, so please be careful and take sun precautions. As for oxygen on the plane and anything else you might need to know to keep yourself safe on holiday, please speak with your medical doctor ahead of your trip. I think this is super important!
      Take care and have a safe holiday.
      Charlene.

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