Bonding Over Battles: Building Empathetic Friendships

Bonding Over Battles: Building Empathetic Friendships

younger than 30

There is nothing quite like having someone truly understand what you are going through. Living with a life-threatening illness like idiopathic pulmonary fibrosis (IPF) can feel excruciatingly isolating. While this is true for anyone living with IPF, it feels extra lonely when you are a young adult dealing with a chronic lung disease that typically affects people a lot later in life.

Since this disease is my reality, I’ve had to learn different ways to combat loneliness and connect with others who also have IPF. This has been especially important to me since my IPF diagnosis because I am someone who thrives off hearing stories of success. I’ve built friendships both in person and through online platforms such as the Pulmonary Fibrosis News forums. I am very grateful for these unexpected friendships.

While there are many positives to having friendships or relationships with others who have IPF, there are also some negatives, such as dealing with the loss of important people in life, which has happened to me several times this past month. Despite enduring grief after those deaths, the years of support we provided one another leaves me with many fond memories that will live for years after they’ve passed. For this, I am very grateful.

I believe it is human nature to want to relate to one another, especially during tough times. In previous Pulmonary Fibrosis News columns, I’ve written about how frustrating it can be when people try to relate to PF experiences but really have no idea how difficult things are. While their intentions are good, PF isn’t comparable to their experience with a cold or bronchitis.

There’s a difference between a support network that tries hard to understand your experience and friends who are living with the same disease as you are. The latter can provide patients with so much comfort while alleviating overwhelming feelings of loneliness.

That empathetic friendship comfort is achieved through a variety of ways:

  • They “get it” without speaking words: One of my friends who has IPF and is close to my age knows when I am having a tough time as soon as I walk into a room. We met at a local support group through our transplant center, and I am so grateful for her ability to simply read how I am coping with my illness, especially when I’m not doing well. I don’t have to explain to her what has been difficult that day or how it feels to experience a negative appointment or how unpleasant the side effects of the anti-fibrotic medications can be. These are all things that she already understands.
  • Empathize versus sympathize: Most people without PF are well-intended and sympathetic to chronic illness struggles. However, most can’t truly understand what we endure, whereas other patients can. It feels so comforting to know when someone else truly understands our struggles, although it is always my wish that no one has to understand what it’s like to live with IPF. I wish this disease simply would not exist. 
  • Sharing their personal experiences: Hearing others’ personal experiences with IPF and how they navigate this disease has been most helpful for me since my diagnosis. I am given immense comfort when other patients share questions they have asked in their specialist appointments or experiences they’ve had with a specific medication or treatment regimen. I feel less alone in all the questions and pondering I have, especially when others mention they have them as well and have addressed them with their medical teams.
  • Act as an additional advocate: Having an advocate with PF who can vouch for how you’re feeling is always important when dealing with a chronic illness. Their help can also significantly reduce the feelings of isolation, as no one else can effectively advocate for your needs because they don’t really know what you need. When someone with PF helps me, it brings me a lot of comfort, because it feels as though I’m not alone in my needs.

Do you find having friendships with people who have the same condition as you is beneficial? If so, what makes it beneficial for you?

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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!

2 comments

  1. RoseMary Comstock says:

    Hi there, I am caregiver for my husband who has been battling with IPF for 4 yrs now. Bob has endured Bilateral pnemonia plus several infections and managed with the help of his doctor to overcome and still keep going. These days his biggest complaint is Dizziness. I am wondering if anyone else out there suffers from this and if so how do they combat this problem. He finds all he can do is lay quietly. His Doctor is stumped and has prescribed ondesitron which helps to alieviate some times. Bob is 84 and in the severe stage of this horrible disease.
    Looking for help
    RoseMary

    • Charlene Marshall says:

      Hi RoseMary,

      Thanks so much for reading my columns and getting in touch via the comments. That said, so sorry to hear of your husband’s recent struggle with dizziness as a result of his IPF. This disease can sure be cruel, can’t it? He sounds like such a strong man, and I am glad his Doctors are by his side helping him through some of those infections. Is he currently using oxygen? If not, I’d look into this first as the dizziness could be due to low oxygen saturations. I’m sure if his Doctors are as supportive of him as you mention they are, then they probably are monitoring his need for this. If he is, maybe an adjustment is required? I was struggling with this as well awhile back and my doctors adjusting my nighttime oxygen, giving me more of a boost while my body is resting. Glad the Zofran is helping a little bit. Is he drinking a lot of water? Dehydration can cause dizziness too. Sorry for my boring/standard/expected replies, they may not be helpful, just not sure what else to suggest based on my own personal experiences. This might be a good question to ask in our forums RoseMary. You can join here if interested: https://pulmonaryfibrosisnews.com/forums/

      Take care,
      Charlene.

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