The Impact of Naivety for IPF Sufferers

The Impact of Naivety for IPF Sufferers

younger than 30
By definition, I always understood naivety to mean inexperience, lack of understanding or wisdom about  a particular topic. Such things could include naivety about the topic of a difficult discussion, or an unrealistic expectation of a timeline for something to happen.

In relation to illness, this definition fits perfectly into a discussion I had recently with my cousins. They were referencing their naivety toward my diagnosis of idiopathic pulmonary fibrosis (IPF) and their understanding of what I will need to go through. More specifically, they admitted they had a lack of understanding of what will need to take place in order  for me to live past the poor prognosis that most of us with this disease face.

It’s pretty common knowledge that the only “cure” for IPF is a double lung transplant – and I use the term “cure” very loosely. Receiving an organ transplant is not a cure; it is essentially swapping one disease process for another. And, while lots of people have lived longer than the expected, the reality is that most patients undergoing this procedure will have shortened lives.

The challenge that I have experienced regarding naivety around my disease is that most people assume a transplant is a cure, and that receiving new lungs will magically make everything better – and sometimes it does. As a result of now being involved in my “lung community,” I know a lot of patients whose lives have been transformed after their transplant.

On the other side of that, I also know a lot of people whose lives have been cut short following their double-lung transplant due to premature death from rejection, infection or secondary organ failure. That being said, unless you or your family member(s) are thrown into the transplant world, it is unlikely you are aware of all the risks that come with transplantation.

Naivety from others is very difficult to navigate when living with a life-threatening illness such as IPF. The most challenging thing that I have had to deal with is people being naïve about my disease, and the likelihood that my life will be cut short. Everyone wants to treat me the exact same as before my diagnosis, and in some respects, I am the same. But in other aspects I am an entirely different person.

Sometimes being naïve about how serious my disease is leads people to thinking that I don’t need help with certain things, such as carrying bags or cleaning my house. People see that, for the most part, I still can function and live the life I want, including living on my own, caring for my dog and working full-time. As a result, some are unintentionally naïve to the fact that on the inside my lungs are slowly dying and fading away.

What others don’t always see is my breathlessness, fatigue and struggle to complete such simple tasks as brushing my teeth or preparing a meal. Sometimes this naivety from others’ and the assumption that I can do things independently leads to frustration on my end and strained relationships. This happens when I assume others know just how hard it is to try to breathe with IPF, when naturally, of course, they wouldn’t know my internal struggles.

Being naïve about an illness, especially one that is primarily invisible (with the exception of supplemental oxygen) is not usually intentional, but it certainly can strain relationships. This is particularly true when others are not able to understand or see the struggles of someone with a life-threatening illness due to their naivety around the disease.

For my friends and family, I am glad you can be naïve about IPF and that you truly cannot understand what it is like to struggle to breathe. This means that you have healthy lungs, and I hope that always will be the case. That said, if you have some spare time, please learn about the seriousness of my disease, and identify what might be most helpful to me as my disease worsens. I would be eternally grateful. I think these are two huge steps that others’ can do to eliminate the naivety about IPF.

I do not want to scare, upset or bore you with details of my disease, but I truly think the more educated and honest we are with each another, even amidst the scary stuff, the stronger our relationships can be.

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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.

13 comments

  1. Lea says:

    It is so difficult to grow. Whether you are growing up, or growing old. We have friends, family, and enemies to grow among. You are growing and recognizing life’s lessons rather well.

    Thank you for being willing to share this part of your journey. It’s kind of odd, but I find your sharing of struggles to be comforting.

  2. Carolynn Fishleigh says:

    Thank you for your comments today. They are very honest and helpful.I would rather face facts than live on false hope. No one knows how we feel unless they have been given the same diagnosis. It is impossible to understand otherwise. I don’t think they mean to trivialize what we go through, they just can’t comprehend it. I was offered a lung transplant, but weighed all the pros and cons and decided it was not for me. I am already 73, so choosing that would seal my fate and I would rather live the way I do now, oxygen, uncertainty and all, on my own terms, than jump into that. That’s just me and I don’t want to discourage anyone if they want one, but it is a very hard decision. I continue to pray for a cure and visualize all of us with happy faces because they have just announced a cure. I have been someone very good at manifesting what I want all my life and so this is not a false hope to me.

    • Evelyn Hudson says:

      Thank you, Carolynn for your honest response. I, too, feel I would rather not receive a lung transplant. I am 69 years old and have been blessed to have a good life with a supportive family. I believe God will work it all out. God Bless you.

  3. Kathey says:

    I can completely relate to this . Very well written and matter if facts. I’m will be sharing this with my family and anyone who might need to be enlightened .
    This disease makes life hard enough with all of its hardships and knowing that we have no cure or anyway to have a normal life anymore. Our new norm is scary to people and I understand that, but we sure could use a little compassion and understanding from those we love the most. Hugs for your day hon, God bless you and thank you for writing from your heart and speaking what’s on your mind .

  4. Barry Gauthier says:

    One of my biggest frustrations is that my pulmonologist didn’t recommend this drug to me,a year ago. Instead, I had to discover the availability and knowledge of Esbriet on my own.

    • Terry Turner says:

      Barry, my husband was told about OFEV right away by his pulmonologist but we researched it online ourselves before he agreed to try it, Fortunately, he has not suffered from diarreah and nausea, the two most common side effects and he’s been taking it for 8 months now. Are you doing well with Esbriet?

    • Dee-Dee Bensinger says:

      Wow that is just hard to understand why someone in his field of medicine would fail to tell you about either of the two drugs FDA approved that could possibly help slow the progression of IPF. My husband had a bad experience with the first Pulmonologist he was sent to. He learned quickly to be his own advocate on this horrific disease. Fortunately, his 2nd doctor was 100% different but my husband continues to read and study all he can. It has helped him learn all he can about anything that might help him manage his disease on a daily basis. I’m so proud of him for how he has handled this life changing news. He is my hero. He just received his new supply of Esbriet in the new dosage of 3 pills per day rather than 9. A small win but he is grateful for it. Praying everyday for some of the clinical trials to come to an end on a promising note and to give hope for all those suffering with IPF.

    • Colleen says:

      Charlene thank you for another great article! Esbriet and Ofev are the only two approved drugs to help slow the progression of the disease down. My doctors will not prescribe steroids as they find they do more harm than good. Make Every Breath Count!

    • Terry Turner says:

      I see my husband who is living each day with both COPD and IPF as a hero. He challenges himself each day at the gym and doctors tell him he would be healthier and stronger than most men his age if not for his damaged lungs. He has his bad days just like anyone living with these disease but he manages to find a positive in everything. I can’t imagine my life without him, he keeps me going.

      • Dee-Dee Bensinger says:

        Terry your husband and mine sound like the same guy. My husband walks a lot, still mows our huge yard using his portable oxygen concentrator in his back pack and taking short breaks. He actually sleeps better on the nights when he has been the most active . He has just learned how to pace himself. Before his diagnosis he was an avid bike rider but it got harder to go as many miles. Like your hero mine has an amazing attitude which I so admire. Bless you both.

  5. Lee says:

    Thank you for sharing this. I have found that one of the hardest things as a patient is to ask for help. People don’t know what to do. I have found that if I ask for specific help, family and friends are there to help me. I have been living with IPF for a long time, since 2003. I have had a lung transplant almost four years ago and my lung went into rejection almost immediately so I am still on oxygen but glad to be living. It is up to us to let people know that we are struggling as hard as that may be. Trust me, I’m not perfect at this. There are “expectations” that I place on myself. We have to help people understand what we are going through.

  6. Audrey Ludlam says:

    I have just recently been diagnosed with PF and am still coming to terms with it. I’m being weaned off prednisone at the moment and am not sure what is going to happen next. Esbriet and Ofev, from what I’ve been reading is not covered in my province of BC and is terribly expensive. So that is out for me. Thankfully there is a ton of info on the web regarding PF and I’m trying to sort it all out. Still confused about the difference between IPF and PF. The only difference I can find is, they know what caused PF, but don’t know the cause of IPF. So, I can only assume Pf is Pf… I ‘m thankfully to have run across this site as it seems everyone is encouraging and helpful to others. I think I need some of that encouragement and helpfulness. Thank you all.

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