My Heart Aches for People Living with Chronic Illness

My Heart Aches for People Living with Chronic Illness

I often write about living with idiopathic pulmonary fibrosis (IPF) and what I’ve lost as a result of my diagnosis.

It’s easy to write about because my life has changed drastically over the past three years. But I need to remember that the changes haven’t been all bad. There have been some unexpected gifts along the way. All the same, it is important for me to try to reframe the negatives associated with a life-threatening disease.

Last weekend, I celebrated the upcoming wedding of a childhood friend at a bachelorette party with my girlfriends. I had to make some accommodations and wasn’t able to participate in all the festivities. For example, the girls wanted to end the evening at a bar with crowds of people and dancing, but I declined because of my compromised immune system and fatigue.

However, I encouraged them to attend and even offered to pick them up at the end of the night. It would have been easy to see my inability to attend the entire bachelorette party as a negative, but I felt better than my friends the morning after, which is definitely a positive!

Amid the laughter, wine, and celebrations, I had a moment of reflection and reframing: I was lucky to attend, despite having IPF. My girlfriends and I made wonderful memories that were captured in photos filled with laughter and tears of happiness for the bride. I will be framing many of them so that I can look back on the special weekend.

When thinking about how lucky I was to attend, my mind wandered to my chronically ill friends who are struggling more than I am right now. My heart started to ache.

Many of you have read the tributes to a late member of the BioNews Services team, Serena Lawrence. Pulmonary hypertension and pulmonary veno-occlusive disease took her life nearly a year ago. I know how much I miss her as a friend, so I can’t imagine the pain her closest friends and family endure daily. My heart aches when I think of the years she was robbed of and the memories she should have been able to make with her friends.

I also thought of another friend who is anxiously awaiting a lung transplant. She’s been waiting for months, and her lungs are declining quickly. I know she worries about how much time she has left with her current lungs, and the time it might take to find a donor.

Instead of making memories this summer with her friends and family, she is stuck in the hospital. It isn’t fair for anyone to be in the hospital long-term, but it is unusually cruel to know that a young adult has missed out on her entire summer because of her chronic illness.

Many in our IPF community knew and loved my amazing co-columnist Kim Frederickson. I miss her and often feel her absence in our community. Recently, her friend shared part of a letter she wrote for Kim’s memorial book. The letter focused on what her future grandchildren should know about their late grandmother. I hope that Kim’s family has an abundance of pictures capturing beautiful memories of their time together.

Reframing the losses of chronic illness into something positive is never easy. However, it is crucial for our happiness. I was initially upset that I couldn’t attend all of the festivities this weekend, but I’m lucky that my health was stable enough to allow me to attend.

Amid all of the fun, I thought about my friends who aren’t getting opportunities like I’ve had this summer or those whose lives were cut drastically short because of chronic illness.

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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!

One comment

  1. jaime L manriquez says:

    Charlenene, was a big pleasure to read your column on “YUNGER THAN 30….. Must be pretty distressing at so young age to realize you have a such horrendous desease, glad you are finishing your studies and lead almost a normal life. Who knows if we´ll see the cure in the years to come. best regards
    jaime

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