Coping with Bad Days and Bad News: Having a Strategy Helps

Coping with Bad Days and Bad News: Having a Strategy Helps

It is inevitable that people living with a chronic illness will experience days that are difficult, both physically and mentally. Since being diagnosed with idiopathic pulmonary fibrosis (IPF) three years ago, I’ve had many of these days. Fear of the future with this disease, physical limitations or restrictions because of failing lungs or fatigue, or a tough medical appointment can cause them.

It is important to ensure that we have adequate coping strategies for these challenges, because they can consume us. Everyone deals with difficulties differently, which is why I believe there cannot be too much discussion about the subject. Other Pulmonary Fibrosis News columnists have also written about this topic. Sometimes it is important to talk about coping with physical symptoms such as pain or fatigue, and at other times, the mental anguish of IPF.

I found advice on Pulmonary Fibrosis News on coping with breathlessness a few years ago. I benefited from this immensely. Recently, PF columnist Mark Koziol wrote about how negative thoughts consumed him shortly after his diagnosis, and how he dealt with those. Kim Fredrickson, another beloved columnist, wrote about what she, as a patient reliant on oxygen, did when the electricity went out.

But what about learning to cope with bad test results or doctor’s appointments, or adjusting to a life you never really wanted because of IPF?

For me, coping with IPF has been an ongoing learning process. I must remain open to this process; otherwise, the grief and anguish of living with a life-threatening lung disease will swallow me whole. Many of us are aware of the link between mental and physical health. If I let my mental health suffer, inevitably, my physical health will follow. As a result, I try to keep generalized coping strategies in mind when I am starting to feel sad or angry as a result of my health.

It is no one’s fault that I got sick, and nothing that I did growing up contributed to my developing IPF. One could argue that I have nowhere to direct the emotions associated with having this lung condition, but that doesn’t keep me from feeling them occasionally. In order to combat the sadness or anger — sometimes even depression — that comes with a lung condition, I hang onto generalized coping strategies that typically make me feel better. While I’ve referenced these in previous columns, they continue to evolve. Here are the tips I try to remember during my most difficult days:

  • Confide in a close friend. There are an abundance of quotes that talk about the quality of friends versus the quantity, and how you can consider yourself lucky if you have one dear friend you trust wholeheartedly. I am fortunate to have several, and I’ve confided in them during different parts of this journey. I can be vulnerable within those moments and know these friends can help me carry some of the weight of this disease. Whether online or in person, being able to discuss your thoughts openly and without judgment really helps.

 

  • Distract yourself with something good. It is important to take time for yourself and enjoy something that will make you feel good, whatever that may be. Maybe it is your favorite food, movie, or hobby. Immerse yourself in it, guilt-free, if it’ll help distract you.

 

  • Control the impact of the bad news. This is an interesting coping strategy, and one I am still learning. The more people with whom we share bad news, the bigger impact there is. As an example, I have disclosed difficult news to my colleagues in the past, and their response was that they all reached out and asked what I needed. While this was well-intended, of course, it quickly became overwhelming, as I couldn’t get away from the news I’d shared. Strategically choose when and to whom you disclose difficult news to minimize the impact of reliving the details over and over.

 

  • Ask questions! Knowledge is power, and I know I always feel better during moments of difficulty or uncertainty when I have answers to my questions.

What are some additional coping strategies you use to deal with bad news or difficult days with IPF/PF?

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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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8 comments

  1. Bill Ecton says:

    For me personally, I’ve decided to turn to God for peace and courage. He offers us the very things we need when we’re hurting: peace to deal with our present circumstance and courage to deal with our future.

    • Charlene Marshall says:

      Hi Bill,

      Thanks for writing and sharing your experience with how you cope. Glad you have been able to find peace and comfort in trusting God. I hope this continues for you, and thanks again for sharing. Bless you.
      Charlene.

  2. Lorena McManus says:

    Hi Charlene,

    Before being diagnosed with PF 3 years ago at aged 58 I had survived three Primary cancers in my thirties and then 10 yrs later suffers serious long term side effects from radiation and chemo. I was forced to give up a career I loved and am more debilitated by these than the PF. Fro me and Kim points this out, it is so important to grieve the losses that chronic illness brings so we can arrive at a new level of coping. I also try to be grateful. I’ve had nearly 60 years of life and for that alone I am grateful. I look at you Charlene and the younger folks on here, some with young families and I wish I could give you some of my years. But believe me I have my bad times-no saint. Be real. I don’t personally subscribe to the fight and be a warrior philosophy because it I feel it sets up a sort of onus on the patient- failure of you don’t beat it. Many cancer folks feel that way too. Thanks prefer to say I live my best life everyday! I also worked in palliative care for many years. I be,ive it’s important to utilize their servuces to make sure I am as symptom free as possible. Being physically comfortable least to better coping and the reverse as you point out. Sorry to go on and on. All the best folks. Lorena

    • Charlene Marshall says:

      Hi Lorena,

      Thank you so much for reading my columns and getting in touch via the comments. It is lovely to hear from you!
      Goodness, you’ve been through so much and are so courageous to have shared a bit of your experience with us. Sorry you endured both the cancer(s) in your thirties and the side effects from radiation and chemo. I’ve heard the longterm effects of both of those treatments can be life-altering! I completely agree with you (and Kim!) about the importance of letting ourselves grieve those losses we experience due to health issues. It is so tough but very important. You are too kind to wish that for us, but I think it is just so important for all of us to focus on the time we have and like you said, be grateful. Kudos to you, I know that is tough! I am so glad you shared your thoughts about palliative care too, I worked with palliative kiddos for awhile and as awful as it is to say this: I loved it. It isn’t because they were dying, of course that was terrible, but while they were; we were able to make their time and experience as comfortable and memorable as possible. When the time comes, I will be enlisting in the help of palliative care for sure.

      Warmest regards,
      Charlene.

  3. Shirley Leeper says:

    I’m a 91 year old lady that has just been recently diagnosed withIPF Needless to say it was a shocker to hear that. My biggest problem at the moment is a very harsh almost debilitating cough. I feel with this coughing I need to stay away from people because I sound so awful. I am nebulizing every 4 hours so that in itself is time consuming and keeps me somewhat house bound. I try walk everyday but this disease has left me rather weak and short of breath. All of this combined I find I am becoming quite house bound. I’m trying to accept this considering my age I have lived a long blesses life so I don’t feel sorry for myself, just amazed that this is the way I will die. Just some thoughts of mine.

    • Charlene Marshall says:

      Hello Shirley,

      Thank you for reading my columns and reaching out via the comments. It is so hard to predict what will go through our minds when we hear of our IPF diagnosis, isn’t it? Sorry to hear you’re also now facing this cruel disease. The cough absolutely can be debilitating to us, and oftentimes, people assume we’re sick and not taking proper precautions to protect ourselves. That frustrates me a lot! I hope the treatments give you a bit more breathing freedom. Kudos to you for sticking them out, I know it isn’t always easy. Feel free to write any time, this community is a special one and truly understands what it is like to live with IPF.

      Warm regards,
      Charlene.

  4. Lorena McManus says:

    Thank you Charlene. You are a beautiful writer and I am so pleased you have this column for younger folks. It is so important because you face such different issues.

    You are to be commended for working with kids receiving palliative care. I completely understand how fulfilling and rewarding it can be. I did it for a short time as an elective when I was doing my nursing degree. These kids are so remarkable. Anyway I digress.

    Thanks Charlene. I would love to hear how you are?

    Lorena

    • Charlene Marshall says:

      Hi Lorena,

      Thank you so much for reading my columns and getting in touch via the comments. It is lovely to hear from you, as always, thank you for being so kind in reaching out to see how I am doing.

      I never imagined being a writer (truth be told: I didn’t do very well in English courses in school) and especially not being able to write about living with a life-threatening lung disease as a young adult but here I am. It has become so therapeutic for me, and I’ve had the true privilege of connecting with others through my writing and for that I am so grateful. Thank you for the kind words!

      I couldn’t agree more re: the resilience and strength of kids facing end-of-life issues. They’re amazing, and when I get to be part of that journey with them (even a small piece), it is very rewarding. Difficult as well, so it is important to exercise self-care 🙂

      I am doing okay, thank you for asking. I saw my doctor recently with complaints about excessive fatigue and periodic dizziness. She’s changing one of my medication doses, and eliminating another a little earlier than expected as she thinks this might be the culprit. We’ll see if it changes things. I am happy to share though that these pesky symptoms are slowing down a bit, thankfully. I had bloodwork done too and so far from what I can tell (we can see our results online), nothing is too concerning so that is good. Otherwise, I am just moving forward one step at a time. It is the long weekend here in Canada, so I am just wrapping up some email replies and forum posts then I am headed to the cottage to be with my family. I’m looking forward to this! How are you doing?

      Keep in touch and sending you much love and best wishes.
      Charlene.

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