With PF, Mental Health Is the Elephant in the Room

With PF, Mental Health Is the Elephant in the Room

When learning to live with idiopathic pulmonary fibrosis (IPF), mental health is an elephant in the room. Too often, it is ignored.

Although it is becoming more prevalent among hospital care plans, it needs to be discussed more frequently. Learning to live with IPF has been the hardest thing I’ve done in my young adult life. My mental health has suffered, and it’s been hard work getting it back on track. Our mental health is equally as important as our physical health.

I recently attended the PFF Summit 2019 in San Antonio, where I took part in a grief-writing workshop. I didn’t expect to get much out of the session. I chose it because the topic of grief interests me. But when I was asked to share with the group, I cried. I realized that I had chosen the workshop partly because I needed it.

Reflecting on my feelings in that workshop awakened the elephant in the room: the negative impact of pulmonary fibrosis on mental health. I don’t think anyone affected by this disease escapes it entirely. There are aspects of my life with IPF that affect my mental health the most:

  • Grief: I realized after the workshop that I am actively grieving the life that was snatched away by IPF. I try not to dwell on it, but it is unrealistic not to miss the life I had before IPF crept in. I miss the community of teammates and sporting events that were important to me. I also believe I have some anticipatory grief over the uncertainty of my future. At times, these thoughts are all-consuming and lead to lots of crying, withdrawal from activities, or wanting to be alone. All are indicators that I am struggling with poor mental health.
  • Financial burden: Financial hardship as a result of IPF is among a patient’s biggest worries, and it is not discussed enough. I know how anxious I am when I have to take time off because of illness or fatigue. I worry about the costs associated with lung transplantation and home ownership. Financial stress is a regular contributor to my moments of poor mental health.
  • Loss of control: So much of this disease is unpredictable and out of our control. I spoke with patients at the summit who said that despite being proactive about staying well, a respiratory syncytial virus had contributed to their rapid decline. It was out of their control. Aside from transplantation, we cannot stop the disease’s progression. Without a doubt, feeling out of control negatively affects my mental health.

Let’s destroy that elephant in the room and start talking about IPF and mental health. Perhaps we can help one another, because we’re stronger together.

What contributes most to your mental health difficulties, and what do you do to combat it? Please share in the comments below.

***

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!
×
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!

6 comments

  1. John Hyle says:

    I was diagnosed with IPF at age 65. I had a single lung transplant on my 68th Birthday (March 18, 2017). I am very sorry this cruel disease affected you at such an early age! Seems unfair. My counselor advised that I read a book called “Dancing with Elephants”. I did so, and so did my wife. It was very helpful! Please read it, and God Bless you.

    • Charlene, you are my hero;I think you are incredibly brave to meet this disease head-on, and tackle the elephants in the room. The social worker on my transplant team likened IPF and transplant to trauma that leads to a sort of PTSD. Your articles demonstrate that you will be a fine candidate for transplant, and will sail through to a renewed, healthy life. I am so looking forward to hearing about that!

      • Charlene Marshall says:

        Hi Holly,

        Thank you so much for reading my columns and getting in touch via the comments. I’m so touched by your kind words, especially knowing/understanding a bit about your journey through Christie’s writing. It’s pretty incredible what you’ve been through too! I’m happy to hear you think I’ll be a candidate, this is something I’m investigating now (listing) because I learnt so much about the process at the PFF Summit. Thanks again for your kind words.
        Charlene.

    • Charlene Marshall says:

      Hi John,

      Many thanks for reading my columns and reaching out via the comments. So happy that you received an amazing 68th birthday present – how wonderful! I will check out the book you suggested, as I am always looking for new reading materials. So glad to hear it was helpful, and wishing you nothing but the very best going forward.
      Kind regards,
      Charlene.

  2. Christie says:

    Yes! I am with you!! And I admire your ability to look closely at what parts of this process have an effect your mental health. Making space for grief is hard. It’s such a sneaky thing. Sometimes I have to just take a day off to grieve. I stay busy busy so I don’t have to think about things (not just my mom’s illness, but other losses) and then suddenly, it hits me like a truck. Letting it happen is important, even though it hurts.

    • Charlene Marshall says:

      Hi Christie,

      Thanks so much for writing – as always, it is amazing to hear from you! I am lucky to have an awareness about the importance of mental health both in my professional and personal life (family members) and try to illuminate that in my writing as too many people don’t think about it (in my opinion). Taking days off to grieve is so important, otherwise it swallows you up entirely, similar to how you’ve mentioned it can hit you like a truck. It’s important to just “let it be” I believe. Thanks again for writing, I love hearing from both you and your Mom as I know you intricately understand this disease and our community.
      Sincerely,
      Charlene.

Leave a Comment

Your email address will not be published. Required fields are marked *