Wanted: More appreciation for rare IPF symptoms and challenges

With our physical, social, and financial problems, a little validation would help

Charlene Marshall avatar

by Charlene Marshall |

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I’m in the business of validating people’s feelings. As a therapist, I’m called upon to listen actively to clients and validate how difficult a particular situation has been for them, even as they work through it. I enjoy this part of my work because everyone is affected in unique ways by their experiences, and there’s often no right or wrong way to feel.

This skill often translates for use in my personal life, as well. A lot of my friends say I’m good at holding space for others’ needs and, in particular, whatever’s bothering them. I’m grateful that I find this task relatively easy, but I’m mindful of how repeated exposure to problems (our own or others’) can affect us mentally and emotionally.

This week, that impact hit me after a conversation with a friend, and I knew I needed to “turtle” for a time to rejuvenate myself. When I need to close myself off from others and focus on myself for a little while, I refer to it as “turtling” — going inside my shell and hiding from the outside world.

The conversation had happened organically, and my friend didn’t intend for it to affect me negatively — but given the topic, which was the challenges of chronic illnesses, it would’ve been hard to affect me otherwise. I wholeheartedly know that no chronic illness is easy, and each comes with its own set of challenges. But I sometimes struggle to empathize with others’ chronic illness journey when the challenges of my own disease, idiopathic pulmonary fibrosis (IPF), aren’t understood, or sometimes even acknowledged.

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IPF is a progressive, life-threatening lung disease that inevitably steals your ability to breathe. I was diagnosed with IPF seven years ago, and unfortunately, there’s no cure beyond a lung transplant, which spurs many considerations on its own.

IPF is rare disease with rare challenges, and most people don’t understand either of those. Here are some of particularly difficult aspects of IPF that I’ve found aren’t understood, at least not typically.

We get no breaks from the disease

Quality sleep is hard to come by with IPF because the lungs always need to be working, which poses difficulty for us. That’s true even if we’re in the most comfortable situations for rest, such as a day spent in bed or relaxing on the couch.

To help people understand this further, I often compare my breathing woes with a broken leg or other serious injury. The break can cause a lot of pain, frustration, and exhaustion, but usually, elevating and resting the leg can bring some relief. But that doesn’t work for those of us with IPF because our diseased or injured lungs can never take a break from working.

Our other organs are affected

When something in our bodies works inadequately, it’s natural for some other body part to help compensate. For those of us living with IPF, however, the opposite can be true; it’s not uncommon, for instance, for us to have cardiac issues because our lungs’ reduced function puts added stress on our hearts.

Unlike some rare diseases that affect just one organ or body system, IPF can involve many organs, and medical care has to manage them all.

Our expenses add up

IPF’s rarity, unfortunately, means some of its medications aren’t covered by health insurance, or they require special authorization. I recently spent months fighting one of my insurance companies to pay for a medication that was relatively new to the market. But I needed it.

Further, the reduced lung function and capacity to breathe often prohibit us from doing some everyday tasks around the house, such as vacuuming or shoveling the driveway. Trying to do them makes us short of breath, which puts our health in jeopardy, which means we often have to pay people to complete the tasks for us. IPF, in this way and others, can be a very expensive illness.

We’re required to educate others

Not only is IPF a rare disease, it’s also invisible (unless the patient requires supplemental oxygen). People therefore make assumptions about our abilities or even forget we have a life-threatening lung disease.

To counter that impression, we need constant education and reminders to help people understand our needs. That’s an extra burden when we’re already dealing with the social, emotional, and physical challenges of our disease.

That said, we need others’ understanding as we deal with these and other rare challenges of IPF. A little validation can go a long way!

Can you think of other considerations that make IPF a uniquely challenging disease? Please let us know in the comments.

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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.


P Schroeder avatar

P Schroeder

Living with IPF brings a multitude of hidden symptoms and a lack of understanding for what you are going through. As I am not on Oxygen, but I am two years into dealing with my IPF, I have had the comment that “You look okay so it can’t be that bad” or “ at least you don’t have lung cancer”. The hidden dietary constraints and dietary issues that come with the medications. Depression brought on by your uncertain future and knowing that you have an “End Date” that is closer than for everyone else. The stress of waiting for that next appointment’s test results. Has there been further decline and by how much ? Increased social isolation due to your visible symptoms like coughing and bad breathing that make going out more difficult. I am fortunate that I have one friend who has a good understanding of Pulmonary Fibrosis and all the issues that I am dealing with. Hopefully other people on this site have somebody that understands everything you are going through.

Carlton A. Stidsen avatar

Carlton A. Stidsen

I was 75 when I was diagnosed five years ago . I'd been short of breath for over 50 years but just put it down to lack of exercise. About 20 years ago, Doctors started picking up Crackling noises in my lungs. Eventually we couldn't deny it any longer . So - my Pulmonologist gave me the standard Death Sentence talk, put me on Oxygen (using a portable Concentrator) and prescribed Palliative treatment ( i.e. See you next year). I'm too old for a transplant , and too broke for the medications' ridiculous cost and too disappointed with the Medication's side effects to seriously consider them. At least this disease is painless. So far , the Concentrator allows me a reasonable Old Age. How much longer ? God alone knows , and when he calls , I will go. Meanwhile , I sleep in a recliner , with the Concentrator hooked up and get a good night's sleep. (aside from peeing every two hours....) .

Jeffrey W Collins avatar

Jeffrey W Collins

Very well stated. This disease impacts each of us in many ways and you described those impacts well. I feel better about my worries because you shared some of yours.

Charleen Ruble avatar

Charleen Ruble

I am a Novis at all this IPF !
Their ways of explaining things makes it easier to understand.
I know I’m in for a hell of a ride because . I am refusing to go on like the Ofef etc , or have any Transplant done.i am
I am on Oxygen since 2021 and have suffered a Collapsed lung and had Covid Pneumonia . I also have AFIB. Would like to know do you have to go the hospital to be on Hospice. I just want to be kept comfortable! Thank you, Charleen Special

Kathryn Maguire avatar

Kathryn Maguire

No, you do not need to go to the hospital to be on Hospice but there is criteria to be admitted to Hospice and the is an expected outcome of 6 mo. Your PCP can order hospice if you are eligible, I think fro what I have read you may be eligible for Palliative care. Speak to your doctor about this,


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