What It’s Like to Have An Illness That No One Knows About
Idiopathic pulmonary fibrosis (IPF) is a little-known, complex, and misunderstood rare disease. I hadn’t heard of it before my diagnosis at the tender age of 28, just over three years ago. Learning to live with a fatal lung disease as a young adult is one of the hardest things I’ve ever done. It is even more difficult when others have never heard of IPF and can’t understand the implications of the disease.
Because of its obscurity, one might conclude that the incidence of IPF is small. However, around 40,000 people in the United States die from IPF each year, a similar number to deaths from breast cancer. Additionally, a study in the United Kingdom found that incidences of IPF increased by 80 percent from 2000 to 2012.
For those who are thrust into the world of IPF following their diagnosis, it can be a lonely and scary place. However, I can assure you that my world, where I know and love many patients living with IPF, is not a small one. And this disease is not as rare as one might think.
So how can we increase awareness of IPF?
I previously wrote about raising awareness of IPF. The Pulmonary Fibrosis Foundation shared some additional ways to recognize Pulmonary Fibrosis Awareness Month in September. Increased awareness leads to more funding for clinical trials and initiatives toward finding a cure for IPF. It also benefits those who are living with this disease, making them feel less alone.
Here are some of the most challenging aspects of living with a chronic illness that few people know about:
- It feels lonely: If you’ve ever experienced something to which others can’t relate, you may understand the loneliness of living with IPF. Few people understand the symptoms of IPF, such as breathlessness. Many of my friends, family members, and colleagues try hard to empathize, but ultimately they can’t. Living with a terminal lung disease as a young adult can be very lonely. However, I’ve found a lot of comfort and encouragement in online support groups and in the Pulmonary Fibrosis News Forums.
- Awareness efforts can feel frustrating: Initiatives such as Pulmonary Fibrosis Awareness Month attract less attention than larger campaigns such as Pink Ribbon for breast cancer. I am not claiming that breast cancer awareness is less important and doesn’t deserve the coverage that it receives every October. However, IPF also warrants recognition. It’s a fatal disease, and its status won’t change until awareness is increased and more research dollars invested to find a cure.
- It can feel exhausting: Aside from the physical exhaustion caused by breathlessness, those with IPF experience other forms of fatigue. Having to continually explain the disease process and how it affects me is exhausting. Sometimes others assume that I’m lazy when I can’t do something and ask for help. When people express curiosity about IPF, I take the opportunity to educate them about it — however, doing so repeatedly can be tiring.
- It can feel fearful: Losing a friend to a lung disease doesn’t get easier, despite its frequent occurrence in my world. These losses bring extreme fear, particularly when the person had the same terminal lung disease as I have. I also worry about catching viruses and bacterial infections. I’ve recently found that common illnesses can quickly become serious and cause permanent lung damage. I am fearful of catching colds and flu and concerned that others don’t seem to fully understand the implications of my getting sick as an IPF patient. While people may know that I am immunocompromised, they don’t always take precautions to stay away from me when they’re sick.
Raising awareness about IPF will help solve some of the challenges I face with living with this little-known chronic illness. Do you share any of these feelings?
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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
Carolyn Calderon
Does a double lung transplant cure pulmonary fibrosis?
Charlene Marshall
Hi Carolyn,
Thanks for reading my columns and reaching out via the comments. Good question! The answer is unfortunately not as black and white as one might think, as some would argue that yes, lung transplantation is a cure for PF/IPF because once the diseased lungs are removed from the body. However, it isn't always a smooth recovery or management post transplant because you are always dealing with ensuring your body doesn't reject the new lungs by managing medication, staying as healthy as possible etc. So technically, if you consider a cure to be free of the disease then a transplant is a cure. However, it is essentially swapping one disease for a life of trying to manage rejection so some people say for that, it isn't a cure of a chronic illness. Not sure if this helps? Take care. Charlene.
Alex mcneill
I to have ipf i am 67 and have had this disease since 2015 just like you said you feel isolated and alone to deal with horrible illness i have been on anew drug called nintinanib was on for ayear and had to come off them it was making ill iam strugling abit now but just have to keep fighting
Charlene Marshall
Hi Alex,
Thanks for reading my columns and reaching out via the comments. Sorry to hear that you're dealing with IPF too, it is such a cruel and unfair disease, isn't it? One thing that really helped me with the social isolation and feeling alone with this disease is joining online networks such as Breathe Support on Facebook or the Pulmonary Fibrosis News forums: www.pulmonaryfibrosisnews.com/forums and speaking with others who had this disease too. It felt nice to be "understood" by others who truly know what it is like to live with this disease. Have you joined any of those groups Alex? If not, we'd welcome you with open arms. Hang in there and feel free to write anytime.
Charlene.
Carol Handy
I’ve been reading your column for 2 years now, but have unable to comment. This is the first opportunity I’ve had to respond. How do I get permanent access to being an “active participant”? I’m almost 91 yrs. & have been on O2 full time since April of 2017. Diagnosed in about 2012.
Charlene Marshall
Good Morning Carol,
Thank you so much for reading my columns and connecting via the comments! You're doing great, and I'm glad you had an opportunity to respond. I will ensure your username and ID are added to our "whitelist" of writers, meaning your response shouldn't ever be held. We do have to hold some in an effort to catch spammers, but I know this can be frustrating. If it is easier for you, feel free to write me anytime at: [email protected]. While I wish none of us were part of this "community", as I never would have chosen living with IPF but I'm glad we have one another. Feel free to write anytime.
Charlene.
Les Jaster
I am an identical twin. My twin brother was diagnosed with IPF after a lung biopsy in Sept 2013 and immediately required oxygen 24/7. He started taking Esbriet when it became available in 2014. He survived 5 years. I was diagnosed with IPF in April 2014. I required oxygen therapy 24/7 beginning Jan 2018. I am taking Ofev. I am on this journey with you.
Charlene Marshall
Hi Les,
Thanks so much for reading my columns and reaching out via the comments. So sorry to hear of your experience with this cruel disease, and your brother's as well. That must be scary to know what he went through from the same disease! I am thinking of you and hoping the OFEV is effective for you and that you don't have too many side effects from it. Thanks for writing and best wishes to you.
Charlene.
Beka
I just wanted you to know that I have started writing a book for the first time. I had this idea about a young girl with a severe illness, and I came across this blog. I'm hoping to use it for research, if that is okay. Thanks for documenting your struggles and fears for others to help raise awareness. I hope maybe I can do a little of the same.
Charlene Marshall
Hi Beka,
Thanks so much for reading my column and reaching out via the comments. I appreciate hearing from others, and about the initiatives to help raise awareness for this cruel disease. a NY-times best selling author is also writing a novel on IPF, it is exciting. You can use my column for research yes, but please ensure proper credibility is all I ask. Take care, Char.
Gins
I have PF and have been living with increasing symptoms for years. I almost always feel like coughing but have learned to resist the urge to a degree. Fragrance and other chemicals are big triggers. It is terribly frustrating when friends continue to use scented products to social events they have invited me to, even after I have said how uncomfortable it makes me.
It doesn’t help that a mutual friend has a mystery condition which affects his breathing and that he has been almost combative when people expose him to triggers. I’ve seen the eye-rolling behind his back. I hid behind his defensive barrier for years and let him take the “heat” from our friends instead of standing up for myself. He moved just a few months before I got a diagnosis of PF and now I’m on my own. I don’t like drawing attention to myself or being confrontational. I’m not ready to give up my social life either. I live alone and I need the support. I recently lost one friend who thinks I’m a manipulative head-case because I spoke up when she slathered lotion on while sharing a hotel room with me at an event.
I had been misdiagnosed with asthma and chronic bronchitis and thought it was not a progressive condition. Now that I know how serious this illness is, I feel compelled to be more forthcoming.
After my lung biopsy I will feel more confident talking to friends about it. But I can’t help being apprehensive. I hate how isolating this disease is.
Charlene Marshall
Hi Gins,
Thank you so much for reading my columns and reaching out via the comments. That said, I'm so sorry you're dealing with this cruel disease too and that the symptoms seem to be worsening for you. I'm slowly learning to "stiffle" the cough too, as mine gets worse but that can be so uncomfortable and I hate doing it, but I also hate coughing. Like you, scented products make this difficult. I'm so sorry your friends aren't respecting your needs around this, that must be awful to have to address it with them frequently. Despite it not feeling this way, you aren't alone in so many of your illness-related needs (we're here for you!) but I know it can feel so isolating to navigate these issues on your own. Sounds like your friends aren't overly compassionate either, and I am so sorry for that.
Once your lung biopsy confirms (or denies) IPF, feel free to connect anytime. We're stronger in this together, and it is nice to know you aren't alone. Take good care, Charlene.
David
I am 22 and I was diagnosed with IPF and take ofev. I made peace with the fact that I cannot support my parents in their old age and am now pursuing masters and enjoying what little time I have left.
I tried to find your email to ask questions but I couldn't find one. :(
Charlene Marshall
Hi David,
Thanks so much for reading my columns and connecting via the comments, though so sorry you're also dealing with IPF. It is such a cruel disease, but I hate that it can effect young adults like you and I. So young to be diagnosed with this! I'm glad you're on OFEV and hope that will help slow down the progression of your disease. Coming to grips with the many things we'll miss out on is tough, I know it well sadly. It looks like you got my email? I have one in my inbox from you I think - I'll make sure I reply as soon as I can. Thank you so much for connecting! Maybe we can join forces and combat the assumption that IPF doesn't affect only older people!? I'll write you back via email. Charlene.
Lori
Just learning about this disease. Charlene, you are doing a great work.
Charlene Marshall
Hi Lori,
Thank you so much for reading my columns and reaching out via the comments. I so appreciate your kind words, and do feel free to reach out any time. We're better against this disease if we support one another and stick together!
Take care,
Charlene.