Trying to Survive as a Young Adult with IPF
Young adulthood is a life stage typically filled with new experiences, joy, and social celebrations with friends and loved ones. My closest friends and I fall into this category, which encompasses those ranging in age from their late teens through their 20s and early 30s.
While young adulthood can be a stressful time, it’s also an exciting life stage. Many young adults are starting their careers and entering the workforce for the first time, graduating from college, buying a house, getting married, or having children. As a patient living with idiopathic pulmonary fibrosis (IPF), I am feeling a little lost at this stage of my life.
IPF is a life-threatening lung condition, for which there is no cure. Lung transplantation is the only way to rid our bodies of this disease, but that comes with many risks and considerations. Facing a double lung transplant is not a “normal” experience of young adulthood — but sadly, this is my reality.
I wonder if, given the complexities of post-transplant life, the exciting events of typical young adulthood will be attainable for me. I ask myself if I will ever be able to have kids. And if I can, would I want to bring children into the world considering that my lifespan is threatened from IPF or post-transplant complications? When or how do I introduce IPF into a new relationship? How long can I continue working in my chosen career field?
I am often told that my independence and sense of adventure set me apart from my peers. I am content being alone and have a strong desire to travel the world. I would pick travel over investing money into buying a house — a choice which may be viewed as abnormal. I am OK with straying from the typical path taken by other young adults. What I didn’t choose was IPF, and how much my life with this disease differs from the ordinary lives of other young adults.
In the last few years, I’ve been privileged to stand beside many of my friends as they married their life partners. I have thought that I’d like to have this experience someday too, but then the reality of my IPF prognosis jumps in. I fear that I wouldn’t be able to put the burden of this disease onto someone else. Perhaps if the right “someone” comes along, or the opportunity arises then I’ll think differently. But right now, I am prioritizing survival. As I struggle to find a balance in my life, I don’t know how I could manage all of my requirements, including appointments and medication management, with the needs of a partner.
I am lucky to have a good career, one that I am happy with and which meets my desire to make a difference in the lives of children and families. While I continue to work, I’m finding it more difficult. I’ve shared my struggles in the workplace in previous columns. While my passion for my career is something I share with many other young adults, the difference, however, is in the length of time I will be able to work.
Many of my friends are looking at the long-term benefits of a lifelong career: job security, a pension package, and seniority. I’m unsure if these things will be attainable for me because eventually, IPF will take away my ability to work. I may need time off to address lung transplantation or become too fatigued and weak to continue. I don’t know when this will happen, but that day is getting closer. That’s another abnormal reality I face as a young adult: being on disability at the age of 31.
The differences between my life and those of my fellow young adults are numerous. I’ve shared a few examples, but the disparities are endless. While many of my friends and colleagues are striving to secure a career, buy a house, or get married, my life consists of trying to defy the short prognosis that I have with this life-threatening lung disease. I am also left pondering the complexities of post-transplant life and how that process will set me even further apart from most other young adults. I long for normalcy as I learn to live with IPF.
How does your lung disease set you apart from others who are at your current life stage? How do you cope with this?
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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.
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Comments
Steven
Hi Charlene - I cannot fathom the great differences of what you are going through compared to others who aged through life and even old.
I don't always recognize that my life is certainly now shorter than ever expected. But when I was in my 20's and early 30's I worked hard and dangerous, played hard and dangerous and never expected to see 50.
What I see is people might recognize I am old but they do not understand suddenly running out of breath and needing to sit down a few minutes. They don't understand "you look healthy" but don't jump in to help someone physically very often. Things I would still enjoy if I could.
So what does that leave? Since my early days in the military, I soon learned never to let fear conquer but use it as a co-companion and respond through it, not from it. As far as I remember the scariest thing I hated to do was public speaking - sweaty palms, racing heart, knees knocking but I figured I better do something since I had to speak anyway, so I did.
IPF diagnosis first grabbed me by the throat but I soon found PF News and it has been a phenomenal blessing. And that's the other thing - blessings - they come in unusual packages because we need a paradigm shift to see them many times. That means we know our IPF life is limited so why not investigate the spiritual aspects of our future that many recognize exist in one form or another.
With little to do but be the best example and helper/instructor to my wife and childeren, I paraphrase Josuha 24:15 "but for me and my house we will serve the Lord". Discovering our spiritual awareness and fitness seems highly worthy and even fulfilling to me at this stage of IPF...Steve
Charlene Marshall
Hi Steven,
Thanks so much for reading my columns and getting in touch via the comments. I so appreciate all of your kind words and can relate completely to your thoughts here.
We never tend to assume that our life will be cut short due to a disease, and I am just so hopeful that in the next few years they find a cure for this cruel disease. With that said, I always "lived hard, played hard" like you said you did as well. I have learnt many lessons from my IPF diagnosis, and ones I never thought I'd learn. I sure wish I didn't have this disease and need to learn them this way but I am also grateful that I have as it'll take my peers a lifetime to learn the same lessons I think. I consider this one of those blessings you referred to!
So glad you've found PF News, it has also been a phenomenal blessing in my life. I can't imagine not having the friends I've met through PF News now or going through this journey without them. So glad you're part of that community, and please know that you're never alone. Thinking of you and grateful for your kind words here.
Warm regards,
Charlene.
Kristan
Hi, Charlene, I am interested in your story and wonder if you might contact me privately. I am an author writing a book about a young woman with IPF. Either way, I wish you the very best.
Jed
The official opiniom that pepole under 40 years old are not able to chatch the desise is absolutely NOT TRUE. My best friend has died because of IPF lasy week. He was 35 years old. IPF has destroyed him in 4,5 years. Polish doctors diagnosed it too late.[*]
Charlene Marshall
Hi Jed,
Thank you for reading my columns and reaching out via the comments. I am deeply sorry to hear of your friends passing last week due to IPF - this is such a cruel disease, isn't it? Sadly, as you say, many people think that those of us under 40 can't get IPF and while I wish that were true - I need an explanation of what we do have before I can believe it. I know many who have been diagnosed with IPF under 40 unfortunately. Hang in there and I am so sorry for your loss.
Charlene.
Charlotte Ackroyd
Hi, i don’t usually speak in forums or on others columns but last week my Pulmonologist Specialist had told me he suspects that i may have IPF due to my symptoms and of having them for the last 3 years which have continued to get worse and i am going for a HRCT scan on Tuesday as well as going through a few other tests to get answers — honestly it’s a little overwhelming, i’m 25 years old and already have 20 other illnesses, including, autoimmune diseases and a liver disease (non alcoholic) and last year i was already told that i wouldn’t live past 30 — i’m not worried for myself about being diagnosed with IPF due to all of my other illnesses as it wouldn’t change anything or make much of an impact on my life as there is no getting better and no future for me anyway, but i am worried for those in my life, well specifically the one person in my life, my mum, she has already had a hard time with dealing with all my other diagnoses but i think adding another, especially one as serious as this will make her feel a lot more worse — she has just recently been diagnosed with COPD and is struggling herself but thankfully she has her husband around and of course i’m here for her too, but i worry about what this will do to her health (mentally and physically), she is the only person i have in my life as everyone else turned their back on me 3 years ago, we’ve always pretty much been each others support — the specialist seems so sure of me having IPF and with what i’ve learned about it through the years for the support pages and groups i run across social media i’d pretty much say i have a lot in common with the symptoms it brings, so i have a feeling of what the results are going to say, but i obviously won’t know for sure until i get them — i’m honestly not sure what i could do or say if it turns out that i do have this... like i said it’s overwhelming.
Anyways, i apologise for ranting, it’s hard to find others closer to my ages who has this disease, though i know it can affect anyone under 40 like you said but i’ve spent days trying to find someone to talk to and your column was the first i managed to come across who was closest to my age.
Thank you for listening or in this case, reading.
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?Charlotte?
Charlene Marshall
Hi Charlotte,
Thanks so much for reading my columns and reaching out via the comments. It did post, though I'm so sorry to hear you're dealing with all these cruel health conditions. Being told you have a lung condition of any kind as a young adult is certainly overwhelming; I was 28 when I was diagnosed. An HRCT is the best thing to receive a diagnosis, along with a pulmonologist reviewing your case.... unfortunately the symptoms of IPF mimic a lot of other things, so being thoroughly examined and having the proper diagnostic tests conducted is important. I know it's hard but try not to let your thoughts get too far ahead of you. Worrying about your Mom is understandable, but try to preserve your energy and worry only when you have to.
I'm always here to listen, and offer support where I can. Let me know how the results of your HRCT turn out and know that I will be thinking of you! Connect anytime.
Kind regards,
Charlene.
Charlotte Ackroyd
I’m not sure if my comment posted?
Justin
Hi Charlene, I hope you're doing well. I am grateful to have stumbled across this. I was googling pulmonary fibrosis as I'd heard of it from my gf for the first time. I really need advice from someone like you in regards to IPF.
My girlfriend (22) had a thoracic CT scan in which they found some fibrosis in her lower left lung. But since her CT scan was for something else she dismissed it and her Dr seemed to dismiss it too. Now im left wondering if it truly is nothing to worry about as she has told me its "just a bit" and really did a good job making me not worried. But now that I've dug into it myself it seems a lot more serious..
It says that you suddenly developed symptoms of IPF, which is concerning me as my gf doesn't have symptoms but it seems like it could come on quick and suddenly. Her oxygen saturation and respiration is normal and im trying to convince her to get additional tests but she's kinda dismissive and makes me feel like im worrying too much. I'm not even sure what im trying to ask, but I feel scared and desperate to help her or even if I should be worried or not.
Thanks for reading this, I really needed some way to feel like I can talk to someone who can help or just relate.
Charlene Marshall
Hi Justin,
Thanks for reading my columns and reaching out via the comments. That said, I'm really sorry to hear of your girlfriend is dealing with a fibrotic lung disease. If there is fibrosis in her lung, it is really important that the doctor make a referral to a pulmonologist (lung specialist) to further investigate the findings on the scan. There can be a number of reasons the Dr. dismissed it, and unfortunately, sometimes that can happen due to the lack of understanding about pulmonary fibrosis. I'm not saying that is the case of this physician by any means, but it is my personal opinion that her scan should be read by a lung specialist. From there, if that doctor says it isn't of concern, you can at least be reassured. Early diagnosis and intervention (when deemed appropriate) is the best way to manage this disease. Unfortunately, if it is PF, the research shows that far too many people are diagnosed after the disease has progressed. I'm not sure if this is helpful? Feel free to share my story (diagnosed at 28) with your girlfriend if you think that will help, and both of you can reach out to me anytime: [email protected]. I'm happy to help where I can! My advice will be solely based on my experience, as I am not an MD or trained medical professional, but I have been navigating this disease for 4 years now and a really rocky road to getting the diagnosis.
Hang in there Justin, and I'm so glad you wrote. Feel free to email and we can chat further if it would be helpful.
Charlene.
Tyler Barnhill
Hi Charlene,
I’m a 30 year old Mom of 2 waiting to find out if I have pulmonary fibrosis. I was wondering if we could chat? Thank you!