Being Vulnerable with a Chronic Illness Can Be Beneficial

Being Vulnerable with a Chronic Illness Can Be Beneficial
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One of my most vivid memories of my late friend Serena Lawrence is when we sat down to discuss my becoming a columnist for BioNews Services. I’d just been diagnosed with idiopathic pulmonary fibrosis (IPF), a lung disease characterized by fibrosis in the lungs that prevents oxygenation. Serena wrote for Pulmonary Hypertension News, and she hoped I would share my IPF journey on Pulmonary Fibrosis News.

I remember thinking there was no way I could be a successful columnist. In my mind, I was not a writer. I never did well in English classes at school, and I was convinced that no one would want to read what I wrote. I also didn’t know what my life with IPF would look like. What would I write about each week? Most importantly, some of my friends didn’t know I’d been diagnosed with a fatal lung disease, and I worried they would find out in my columns.

I was wrong to worry about all of these things.

I reluctantly told Serena that I would write a column if she would be there to offer guidance. I felt vulnerable sharing my IPF journey. Little did I know how beneficial it would be to take a chance and share my story of learning to live with IPF as a young adult. It has opened more doors than I could have imagined. I never would have chosen this path for myself, but the opportunities and friendships that have developed have been plentiful and rewarding.

As I learned to live with IPF, topics for my column surfaced and readers said that my experiences resonated with them. I’ve been privileged to connect with patients around the world who read my columns. I value each comment, story, or word of encouragement. Taking a chance on vulnerability has been beneficial. In addition to the online community we’ve built through the Pulmonary Fibrosis News Forums, I’ve also had the following opportunities to work with and advocate for the IPF community:

  • Attending the Pulmonary Fibrosis Foundation (PFF) Summit: I was privileged to attend the PFF Summit in Texas in November. The sessions were incredibly informative, and I networked with well-known and respected advocates in the PF community.
  • Connecting with pharmaceutical companies: I’d heard about the companies that developed Ofev (nintedanib) and Esbriet (pirfenidone), two anti-fibrotic therapies approved for IPF, but before the summit I’d never spoken with their representatives. I also spoke with staff from Respivant Sciences, a company sponsoring a clinical trial on the IPF cough. It was fascinating to learn about the efforts of these companies to help patients living with this disease.
  • Blogging for the IPF Foundation: I’ve expanded my writing efforts and occasionally blog for the IPF Foundation.
  • Speaking with a bestselling author about IPF: While on vacation in Hawaii, I was contacted by author Kristan Higgins. She has a novel in the works about a young adult living with IPF, and it is important to her to adequately represent the character. We’ve been in contact about information and details she can include in her novel.
  • Being part of the Pulmonary Wellness Foundation: At the PFF Summit, I met Noah Greenspan and learned of his efforts to ensure that pulmonary wellness programs are available to all patients. I recently agreed to be on the board of the new Pulmonary Wellness Foundation and to offer a patient perspective. I look forward to this role and to collaborating with professionals in the field.
  • Co-facilitating a new Facebook group: Breathe Support Network is an incredible online source of information and support for those living with PF and their caregivers. I’m looking forward to working with the founder on a support group for patients under 40 who are living with PF. Our support needs are unique and sometimes it feels as if we have nowhere to turn.

I am indebted to Serena for persuading me to share my story. Without her encouragement, I never would have taken a chance on being vulnerable, and I would have missed these opportunities. It can be beneficial to do something that scares you.

***

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. Charlene thanks for all you do and excited to hear about you getting your masters. It is people like you that make a difference, you have not found the cure but the information you share helps those of us with IPF know that we are not alone.
    Just know that I would be willing to help in anyway I can. Once again thanks for all you do.

    • Charlene Marshall says:

      Hi Larry,

      Many thanks for your kind words and for reading my column! I actually was able to finish my masters successfully, and feel so grateful for that opportunity. Now I need to focus on taking what I learnt and putting it into practice for the benefit of IPF patients — it is so important (as you say) to know that we’re not alone! Thank you for your offer to help, I may take you up on that as I start collecting some data about which initiatives would be most helpful for patients. So appreciate that offer, and thank you again for writing.
      Charlene.

  2. jaime l manriquez says:

    Same as larry said, thanks God we are not alone, we have you Charlene,Also congratulation on your masters, I´m a reader of your columns since I became a member, . I m willing to share my experience with IPF wich I carry since 2012. People like you make our lives better helping some way to carry on whith this horrible desease…best regards
    jaime

    • Charlene Marshall says:

      Hi Jaime,

      Thank you so much for the kind words and as always, for reading my columns and reaching out via the comments. It means a lot to me! We’re stronger together and sharing my experience has become meaningful to me and I hope to others as well. Please don’t hesitate to write anytime.
      Charlene.

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