I’m Embracing Desensitization as a Coping Strategy

I’m Embracing Desensitization as a Coping Strategy

I was diagnosed with a fatal lung disease called idiopathic pulmonary fibrosis (IPF) three years ago. Since then, my life has been full of ups and downs — most of which my peers, who are other young adults, cannot relate to as a result of living a healthy life.

This disease has given me unexpected gifts such as writing for Pulmonary Fibrosis News, where I’ve been able to build an online network of support with other patients. IPF has also been the culprit of extreme heartache, resulting from the loss of activities I was once able to do and no longer can, plus the gut-wrenching losses of friends with this disease.

Sometimes I wonder if IPF has made me more empathetic toward people with chronic illness or if it has desensitized me from the hard things that come from living with IPF. The answer to this question depends on the situation, but I recently caught myself experiencing something I would have reacted to differently prior to my diagnosis. I learned of a faraway friend’s death from IPF, and instead of showing emotions when I discovered the news online, I found myself shaking my head and quickly transitioning to another activity as a distraction. It felt as though I expected the news and wasn’t surprised when I learned of his passing.

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I have referenced Personality Dimensions on the PF Forums before. Many of you probably wouldn’t be surprised to learn that my primary color is “authentic blue,” which means I have empathy, compassion, and understanding for others. Each color on the Personality Dimensions test reveals a lot about someone, and each color has its own strengths.

While I would agree that my primary color is still blue, I can’t help but notice that IPF has reduced the primary traits of my “blue” personality. I remain empathetic to others, but I am also realistic and now anticipate or expect difficult things to happen in life. I believe that IPF has forced me to become desensitized to difficult events, especially compared to my healthy peers.

Following are two situations that I have reacted differently to as a result of IPF:

  • A new diagnosis of chronic or acute illness: I remember several years ago when my mom was diagnosed with cancer. I was unable to cope with the news and was emotional, unfocused, and at a loss that I couldn’t really help her. Recently, however, I had a close friend diagnosed with cancer and noticed a drastic shift in how I digested the news. I wasn’t emotional and immediately shifted into problem-solving mode to assist her in any way that I could. After being diagnosed with a life-threatening illness like IPF, patients have no choice but to carry on and learn to live with our disease. I now take this approach when supporting others through a new diagnosis, which is a drastic change in how I would have previously reacted to the diagnosis of a friend’s illness.
  • The death of a friend: I hate to admit that this is now something I expect and mentally prepare myself for. I used to be optimistic and hopeful that someone would live a long time with their chronic illness, and while I still want to believe that, I am also realistic about the fact that they could die. This has been a gift in a way because I focus on spending quality time with friends as opposed to quantity, which is a lesson that many of us learn too late or after someone passes away. Mentally preparing myself for this possibility helps me cope when it happens, but I am sad that IPF has forced me to face the reality that I will lose many friends in my chronic illness circle.

Generally speaking, I still feel deeply for others when they are going through hardships, but the impact on my ability to function and focus on my own life while holding this news has changed. IPF has forced many losses upon me. As a result, I am now desensitized to death and bad news.

It feels like these are expected life events that others endure, and because I can’t change it, I have to focus on learning how to work through it. This is why I shift into problem-solving mode right way. This could be perceived as flippant or emotionless, I suppose, but I can’t help it. IPF has changed the way I see the world.

Can you relate to feeling desensitized to certain things since your IPF/PF diagnosis?

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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!

8 comments

  1. Hi Charlene. I can understand your feeling of being desensitized. I think it comes to that because we wonder if we might be next. After all we have a dreadful fatal diagnosis already. But you helped your friend with cancer as you could give her support. Many will just avoid it and slowly disappear. You already know the battles in life with chronic disease. You are mentally strong enough to help others by being a moderator here on PF News and sharing yourself with us. Having IPF (which I denied for a year + and actually just accepted recently) does give a different perspective on life. We learn new things about ourselves. Each person is different as a Warrior against their disease. I wonder how I myself will be as the IPF progresses. I hope I am as strong as you are. Linda Williams

    • Charlene Marshall says:

      Hi Linda,

      Thank you so much for reading my columns and getting in touch via the comments. As always, it is lovely to hear from you! I’m glad someone can relate to this topic, I wasn’t sure if I was “far reaching” here to have this column resonate with others. I think you’re right about pondering ‘what comes next’ and that is maybe why we’re desensitized to bad news. This dreaded disease sure does give us a different perspective, I agree. Have you ever heard the country song “live like you were dying”, Linda? The words in it really resonate with me too, and I wish people lived like this all the time, even those without a chronic illness. It is how I strive to live my days as I can. Thank you for your kind words, I appreciate them and all of our correspondences here and on the forums. Hang in there, we’re always here!
      Charlene.

  2. Connie Lum says:

    Hi Charlene- I’ve been enjoying this site with you as moderator for almost a year now. I have familial IPF and am currently asymptomatic. I am not sure I would call your response as desensitized. I retired 2 years ago as a RN in a NICU. Being in an environment where you deal with life or death puts a different perspective on both. Death is part of life, whether it’s for only one day, one week or a 100 years. Learning to live by taking each precious hour is something, I hope we all learn, is a gift. When things get bad I try to remember that. Having a fatal disease reminds us of that everyday and helps us accept what we are given till the day we die. I don’t feel it’s desensitization to look at things realistically, you still feel the pain of a loss one or helplessness for someone who has a disease , you just understand. I just wanted to put my 2 cents in. Thank you for letting me explain how I see my disease and how I cope. Take care.

    • Charlene Marshall says:

      Hi Connie,

      Thanks so much for reading my columns and reaching out via the comments. I am glad to hear you are asymptomatic, and hope you remain that way for a long time to come!

      I so appreciate hearing input on this column from others – many have been able to better describe my experience than I was able to do, and I am grateful for this. It is just another indicator to me that people on this site truly “get it”, which I often need. I can imagine the NICU environment would have been so tough, and surely given you a perspective, as you say, that death is just another part of life. I too hope everyone learns to live every day like it is a gift. Have you ever heard the country song “live like you were dying”? I think about the lyrics often and try to remember that every day. You’re right, I do feel the pain of losing someone I love (the passing of Kim Frederickson in June was awful for me) but I understand too, and can only hope that when someone dies from IPF, that their ability to breathe is restored fully and they are no longer in pain or discomfort. Thank you for sharing Connie, so nice to be able to converse with others on these tough topics.

      Wishing you nothing but the best. Stay in touch!
      Charlene.

  3. Great column!
    I feel the same way. I no longer go to the actual support groups because I just can’t face seeing any more new faces. When I hear of another person passing, I too digest it quickly it seems, accept it, and move on. There was one person recently though, that I used to Message back and forth to. Never met each other. He was so excited because he was going into hospital for testing and was in rough enough shape that he would have been at the top of the transplant list. I was so happy for him and telling him I felt sure this was all going to work out. He had everything going for him..age, supportive family, healthcare plan, etc., Then I received a notice from his daughter that he had passed away in hospital before he even got listed. That hit me like a ton of bricks… I think you have to be able to compartmentalize all the different aspects of this disease. What it takes, what it gives…or you become overwhelmed. Stay strong…but have a good cry often.

    • Charlene Marshall says:

      Hi Erica,

      So nice to hear from you, thanks for reading my columns and getting in touch. So sorry to hear you can relate to this topic, I’m glad I was able to put it into words to hopefully help others realize that they aren’t alone in this odd experience. Like you, I tend to digest bad news (ie. someone passing away) and “move on” quickly. I shed a few tears, and then get back on with my life and sometimes this feels insensitive. I know it isn’t always like that, because losing Kim Frederickson tore me apart, but sometimes I wish I felt a bit more. I wonder if it is a self-protection/preservation thing for me? I’m so sorry to hear about your friend, that is just awful. So unfair isn’t it? Good idea about compartmentalizing things, it sure helps us get through the disease. Hang in there, and know that I’m always here to listen.

      Kindest regards,
      Charlene.

  4. John T Freitas says:

    Charlene, I think the word for your new perspective is “wisdom,” not desensitization. As I approach 75, having been diagnosed with IPF a year ago, and having somehow survived cancer, temporal arteritis and an array of other medical adventures over the years, I too have come to view life and death philosophically. At my age, friends and relatives seem to be dropping like flies. Nevertheless, when I hear about someone so young having to deal with this, and becoming prematurely inured to the imminence of death, it just breaks my heart. The flip side, though, is that you’re performing a saint worthy service of caring and compassion to everyone in the IPF boat who reads your columns, finds helpful ideas, and knows they’re not alone. In my humble opinion, that’s the most important thing one can do in life. It took me 75 years. You’ve been blessed with early wisdom.

    • Charlene Marshall says:

      Hi John,

      Thank you so much for reading my columns and reaching out via the comments! I so appreciate your kind words – and actually, many people who have left me comments have been able to better describe what I’ve been experiencing than I have which I appreciate. I appreciate hearing your approach to thinking about life and death, this is a topic I could talk about for hours so thank you. I think I will focus on the reframe you gave me, not thinking about it as a potential negative (desensitization) but instead as wisdom that will hopefully allow me to support or help others. While this path is not what I have chosen, there certainly have been small gifts along the way! Thank you for your kind words, I so appreciate it and hope that all of us dealing with this horrid disease recognize that we’re not alone. Thank you my friend. Sending you nothing but the very best!
      Charlene.

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