Chronic Sorrow Is a Powerful Force in My Pulmonary Fibrosis Journey

Chronic Sorrow Is a Powerful Force in My Pulmonary Fibrosis Journey

younger than 30

Following the diagnosis of a life-threatening illness, it is hard to put into words the gamut of emotions a patient might feel. This is true at the time of diagnosis and throughout the disease progression, as emotions ebb and flow while patients learn to cope. At least, this has been my experience after being diagnosed with idiopathic pulmonary fibrosis (IPF) as a young adult.

As I approach my third year of living with this life-threatening lung disease, I still find it difficult to summarize how I feel about IPF. I have both good and bad emotions associated with these last few years, but I can’t seem to settle on just one emotion that trumps all others. For example, I experienced a lot of sadness when I was first diagnosed with IPF, but I can’t say now that sadness is how I feel most of the time, because it isn’t.

I recently stumbled upon an emotional state that more accurately describes how I feel living with IPF.

Have you ever heard of chronic sorrow? A website designed by a longtime pediatric nurse to educate others about chronic sorrow describes it is a normal grieving response for those facing a chronic illness. While the information mostly is aimed at parents of pediatric patients facing chronic health conditions, it likely could be applied to adult patients as well. According to a study published in the journal Scholarly Inquiry for Nursing Practice, chronic sorrow can be described as long-term periodic sadness, cyclical sadness, or intense feelings of grief.

Interested in Pulmonary Fibrosis research? Check out our PF forums and join the conversation!

The more I read about chronic sorrow, the more I thought it applied to my life with IPF. What was particularly notable for me was the fact that the emotions associated with chronic sorrow were cyclical. I do tend to go through periods in which emotions associated with chronic sorrow are more intense than at other times.

I still have moments in my life when happiness is the emotion that trumps all others due to the various good things happening aside from IPF, but they are short-lived. Contrarily, there are times that fear, grief, and sadness take hold and shake my ability to cope with IPF. This is when I tend to turn inward and engage only a small, select group of friends who support me during these times, which are among my most vulnerable.

Another interesting piece of information I learned while researching the topic of chronic sorrow was how parents might react to the chronic health issues of their child. Although I am an adult, I tried to think of how this information might apply to my parents and how they feel about my having IPF. I’ve previously mentioned in other columns that my relationship with my parents was difficult when I first was diagnosed. We didn’t really know how to accept this news, and denial became part of our daily coping strategy. Reading further into the topic of chronic sorrow helps me understand why this might have happened.

Are there people in your life, such as caregivers, who might be experiencing chronic sorrow?

The last piece of information I read about chronic sorrow that resonates is that it is felt most when there is no predictable end to a chronic health situation. Sadly, for patients with IPF, the only predictable end is death, because even following lung transplantation, there are hurdles that patients must navigate with their new lungs. Lung transplantation entails so many details that patients must consider, as I’ve described in a previous column. These considerations include a potentially complicated post-transplant life of medication management, side effects, and unpredictability.

I am thankful to my friend who shared information about chronic sorrow on social media, as it sparked my interest in reading more about it. She is the mother of a child who has a chronic health condition and was also surprised at how relatable the information she found was to her situation. I now have a greater understanding of the many emotions that come from living with a chronic lung disease, and feel I can summarize them a little bit better when others ask.

Do you feel affected by chronic sorrow in your journey with IPF/PF? If so, what helps to counter these feelings?

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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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16 comments

  1. Ronerik Christie says:

    Hello, I too have IPF( diagnosed a year ago) It has been an emotional strain but, my Wife and this website have helped tremendously.

    • Charlene Marshall says:

      Hi Ronerik,

      Thank you so much for reading my columns and for getting in touch via the comments. I sure wish it wasn’t this cruel disease that brings us all together; it shows no mercy for us or the ones we love at times doesn’t it? The emotions and difficulty associated with IPF are hard to describe, and it was my hope that others might relate to the chronic sorrow topic I wrote about recently as a way of trying to capture some of it. Glad your wife is a significant support to you along with this site, I’m glad to hear that. Feel free to reach out any time and please know you’re not alone.

      Regards,
      Charlene.

    • Charlene Marshall says:

      Hi JoAnn,

      Thank you so much for reading my columns and connecting via the comments. Glad you have the comfort of your faith in the Lord and prayer, that is wonderful and I hope you’re able to hang onto that in the years to come:)

      Warmest regards,
      Charlene.

    • Steven Dragoo says:

      Hi JoAnn,

      The Lord has blessed you as you have certainly outrun the statistics regarding 3-5 years of IPF life. Is there a specific regimen you use that you might share?

      I do several things daily that certainly help but I am getting a cold much more frequently and intermittently plagued by being overwhelmed with trying to do too much. Almost everywhere I look is a difficult problem to fix the situation.

      Continued success and blessings to you…
      Steve

  2. Rafe’ Shearer says:

    Even after transplant I can completely relate to what you wrote. I’m 49 with two teenagers and I wonder all the time how much of their life I’ll be blessed to be a part of.
    I’m so glad that you and your parents were able work through some of the awkwardness. I’m on both sides as a daughter and a parent. I know it’s been so very difficult on my parents as well. Take care. ❤️

    • Charlene Marshall says:

      Hi Rafe,

      Thank you so much for reading my columns and reaching out via the comments. Congratulations on your transplant – I hope you are doing well and continue that way for a long time. Sounds like you sure have a lot of great things to live for, including those two teenagers 🙂
      While it was difficult in the beginning, I sure am glad to have this insight into my parents’ experience of what it might be like to have their daughter outlive them. I can only imagine how difficult it is to be on both sides, as a parent and child. Thanks for sharing and wishing you nothing but the best.
      Charlene.

      • Robert Perinba says:

        Dear Ms. Marshall:
        I like reading your columns very much not just for the ideas expressed but the graceful style of your writing and the decorous emotional restraint and reflectiveness you display. I was diagnosed with IPF about six months ago while going through routine cardio-check up I don’t have serious symptoms yet.I am 85 years old and I am hoping to kick off with another less frightening disease than IPF before serious serious IPF symptoms develop! In any case. I and I am sure some others too, would like to know the daily routine with which you cope with the symptoms: Exercise? Inhalers? Rehabilitation Programs?Diet?Herbal or Standard medications?

        • Charlene Marshall says:

          Hi Robert,

          Thanks so much for reading my columns and getting in touch via the comments. I really feel touched when someone connects about the topics I choose to write about, and although I wish it wasn’t this cruel disease that brings us all together, I’m glad to know other people truly understand. Your kind words touched me today, thank you for that Robert!

          I hope you remain as symptom-free as possible for a long time; IPF can progress very slowly of course, it all just depends on the person. I am entering year-three of my diagnosis and have progressed slower than most thought I would, which I am happy about. I hope this remains the same for you too!

          Regarding my daily routine, it often changes based on the day (I am still working full-time, though this has to end soon as I am getting so tired…) but it goes something like this: get up at the same time everyday (this is important for my internal clock), do my spirometer, and take my inhalers. Then I get ready for work with a warm glass of water with lemon/lime in it – just something I’ve grown to enjoy after a forums member told me about it, and off to work I go. I typically have a small breakfast, bigger lunch and small dinner. I need to eat solids at all meals as I am on Ofev and need it to subdue the side effects. I also take inhalers throughout the day (although not sure these are helpful for me) and try to drink as much water as I can. In the evening, I usually come home and take a little rest – not sleep but lay down for a little bit before making dinner then my exercise regimen is walking my dog. I like tea at night, and I take a medication, just a very small dose, to help me sleep following a car accident. Does this help? LEt me know 🙂

          Cheers,
          Charlene.

  3. NikChron says:

    Most Excellent Thread!
    I think we are all Greiving. 5 Stages of Grief + Chronic Sorrow is exactly what I been Feeling. Everyone has been trying to help me cause they think I am suffering Depression. Now thanks to you, I now know what my actual condition is! It’s natural for us to be depressed, we have been dealt a depressing situation. We have every reason to be dealing with Chronic Sorrow.

    • Charlene Marshall says:

      Hi NikChron,

      Thank you so much for your kind words about my column, I am glad it resonated with you a bit. I agree, and think we’re all grieving and weaving in a non-linear pattern of the 5 stages of grief. That is what I tell all my clients in my full-time role – grief is not linear, there is a lot of back and forth! Isn’t it really interesting to learn of chronic sorrow? I read it from my friend and knew instantly that I was experiencing this! I couldn’t believe how relatable it was, and I feel better now being able to name it. I hope you can share this information with your friends/family too, and help them realize what it is you’re feeling. Thanks again for sharing and wishing you the very best!
      Charlene.

  4. Carolyn Conner says:

    Dear Charlene,
    I haven’t read the article on Chronic Sorrow yet, but I know I am already experiencing it. My husband has just been formally diagnosed with IPF, but I have been pushing his Doctors for almost a year to figure out his issues of chronic fatigue, sadness and shortness of breath. The information was in his records, they were just ignoring it. But now we know officially as of two days ago. I lost my father in 2009 and had been taking care of my mom since then. Both of my brothers passed from cancer in 2016. My mother couldn’t take the sorrow any longer and passed in 2018 and then one of my closest friends also passed in 2018. I was there with all of them until the very end. My husband, my rock, has been the person who has helped me through all of this grief. And now I feel I will lose him. I have changed doctors because I no longer trust his original pulmonology group. This new Dr. is getting us to move forward quickly, but says the lung transplant is the only cure. As a health care professional, I realize what a large hurdle is ahead. I think I was always in chronic sorrow, just couldn’t express that. I am glad that you are still doing well, which gives me hope. Your column is wonderful because it is helpful to see how others are managing. (and you have a calming effect) That will help me to help my husband. I am not alone even though it may feel that I am. God bless you and all of your other readers with IPF.
    Sincerely, Carolyn

    • Charlene Marshall says:

      Hi Carolyn,

      Thanks so much for writing to me and sharing your thoughts on this topic, although so sorry you and your husband were thrown into the realm of IPF as well! It really meant a lot to me to read about Chronic Sorrow and finally be able to accurately describe or explain what / how I was feeling. I knew depression or sadness didn’t cover how I felt in my entirety…

      I’m so sorry to hear of your losses Carolyn, what a couple of tough years you’ve had. I can only imagine the fear of losing him too! I am glad the new physician brought up lung transplantation, although it is certainly a scary process. I also have worked in healthcare so the hurdle ahead of transplantation is very worrisome for me, please know you aren’t alone in that thought. For now, I hope you are comfortable with his new doctors, this is important and feel free to connect any time with questions or concerns; we’re stronger when we support one another! If it brings you any comfort, I am approaching year 3 with IPF and still doing quite well. I’ve learnt so many hard lessons along the way but one of the most important lessons I have learned is not taking any day for granted. Easier said than done, but I am so grateful I’ve remained as strong as I have and my disease is progressing slowly. I hope this is the case for your husband as well. Feel free to write me anytime Carolyn: [email protected]… do hang in there and know you aren’t alone. Sending you much love!
      Charlene.

      • Carolyn Conner says:

        Charlene,
        Thank you! You brought tears to my eyes. You have given me hope away from my chronic sorrow. Have a nice weekend.
        Carolyn

  5. Oi Charlene,
    Não há como não ter tristeza crônica com esta doença,mas, precisamos ter fé em Deus e ter esperança de que surgirão novos tratamentos e abordagens que melhorarão nossa qualidade de vida. Devemos também olhar para os lados. Esperança!.. Abraço,
    Décio.

    • Charlene Marshall says:

      Oi Decio

      Espero que você esteja certo de que a cura é encontrada em breve. Precisamos permanecer esperançosos! Obrigado por escrever, e espero que você esteja fazendo o melhor possível.

      Saudações,
      Charlene

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