Why September Is Hard for Me as an IPF Patient

Charlene Marshall avatar

by Charlene Marshall |

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As a patient living with a chronic illness, I’ve become comfortable with people using clichés to try to comfort me. People naturally want to relate to others, but it’s often hard for someone who’s healthy to understand the experiences of a young adult who requires oxygen to breathe.

One cliché I often hear is “life is short.” While none of us know when our time will be up, those of us with IPF know that the likelihood of our lives being cut short is one of the cruelties of this disease. This can be agonizing mentally when you’re forced to spend prolonged periods of time away from loved ones.

Typically, September is like a new start for many, as a new school year begins and the season changes from summer to fall. For our family, it means the time we spend together at our cottage must come to an end, and the prolonged period apart during long winter months begins. This is just one of the reasons I find September a hard month as an IPF patient.

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Despite the heat and humidity of summer, I thoroughly enjoy our time at the cottage. I love being on the beach and spending quality time together. My cousins and I see one another often at the cottage, but during the frigid winter months, when the cottage is closed for the season, our visits are only sporadic.

This can feel scary to me as an IPF patient. What if something happens to me in the time that we’re apart? One could argue that something could happen to anyone during prolonged periods away from family, but the risk seems greater with a disease like IPF.

On Labor Day, the first Monday in September here in Canada, I stood on the beach hoping and praying to see the same views next spring. I want to remain well enough to swim with my cousins, go kayaking, and keep up with the social aspects that come with life at the cottage. Most of all, I want to continue defying the prognosis of this cruel lung disease. I value the quantity of our moments together rather than just the quality.

Another reason I dislike September is the impending cold and flu season. Long before the pandemic, I feared cold and flu season because I am immune-compromised and tend to get sick easily. For IPF patients, a simple cold can escalate quickly and become detrimental to our overall health.

Before COVID-19, I remember advocating on social media about the importance of getting a flu shot and staying home when you’re sick. Now I think people understand this a lot more. Knowing that in September we’re inching closer to the cold and flu season leaves me feeling anxious and fearful. I don’t want to risk getting sick and losing more lung function than I already have.

I do enjoy the cooler temperatures and crisp air that accompanies September, but since my diagnosis in 2016, September has been a busy month for an entirely different reason. September is Pulmonary Fibrosis Awareness Month, and the lack of awareness about this awful lung disease is hard for me.

A few years ago, I wrote about how PF Awareness Month feels less important than other disease awareness months, and I still feel that way. Unfortunately, an estimated 50,000 people die each year from IPF in the United States, which is more than the number of people who die from most cancers. It breaks my heart that most people still have never heard of IPF. How can it be so deadly and remain so unknown?

Patients, caregivers, professionals, and advocates work hard each September to create awareness for this terrible disease, but it just never feels like enough. As a patient living with IPF, this is disheartening, and I’ve grown weary of September over the years because I want to raise awareness and do my best, but I’m not sure it’s working.

I know I will adjust, but I’m curious to hear from other IPF patients if there are particularly difficult times of the year for you. Feel free to share in the comments below or connect with us on the PF News Forums.

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

Comments

Arvind Arora avatar

Arvind Arora

Iwas diagnosed with IPF in January 2018 às suddenly I felt Iwas short of breath and fatigue and strange cough from throat the moment I went to the bed of With arm pain and chest pain went to my Dr.Is it heart Iasked he said noworse than that it is is PF.What the hell was that I had never ever heard of it in my 72 yrs inspite of the facttht I have Drs all around in the family and among friends. Thanks to my pgi drs and local Drs I'm coping somehow

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Charlene Marshall avatar

Charlene Marshall

Hi Arvind,

Thanks so much for reading my column and reaching out via the comments with some of your story. This disease is cruel, and I'm really sorry you're facing it and all the symptoms that come with it. Glad to hear you are coping well - keep that up, it will help, although I know it is easier said than done. Take care,
Charlene.

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John Hamilton avatar

John Hamilton

Thank you for this beautiful contribution to this Forum Charlene. I agree with everything that you have written. I too am living with IPF at 65 years of age and have lost my Uncle, Mother, Sister and brother to this horrible disease. I have an older Brother left that just turn 79 without any symptoms (thank God).
September is a hard month as I watch the leaves start to turn colour, I know what's around the corner. It was 2 years ago around this time that I developed a cough and it stayed with me for a good 3 months before turning into pneumonia by January. The hardest thing to hear from your specialist is that you have IPF and there's no cure.
I enjoy reading from this Forum every day and to be able to share everyone's stories gives me comfort and joy. Hopefully, one of these September's, a cure will be found.

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Charlene Marshall avatar

Charlene Marshall

Hi John,

Thank you for reading my columns and reaching out via the comments. I'm so sorry to hear of the loss of your family members from this cruel disease - it is just relentless and needs to be stopped! The leaves/seasons changing and knowing what's ahead, including both RSV season and the brutal winter months, really makes me struggle as well. I'm glad the forums and our posts bring you comfort; please don't ever hesitate to reach out if you need support, we're here for each other. Take care and may next September a cure be found for this awful disease.
Stay well,
Char.

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Taleena Koch avatar

Taleena Koch

September is a hard month for me for a couple of reasons. One being that while I advocate for PF every day of the year, I really push in September to advocate as much as humanly possible and feel it often falls on deaf ears. I am but one person and I am not a "noteworthy" person - not a celeb, not someone that the world knows - so what I post out there in all my social circles is miniscule compared to what we need. We need BIG voices to speak out. But those voices will only speak out if they're paid and none of us can afford their rate. So I keep on speaking and raising awareness hoping that if even one person is made aware, it was worth it. But the main reason September is hard for me is that it is the month I lost my mom to IPF. She died September 27, 2009. Nearly 6 years after her diagnosis of end stage IPF. She fought so hard for so long just living with this disease. Along the way she showed me that anyone facing the most dire of circumstances can live - and die - with grace. She almost never complained. If she did, it was only to my husband or myself. She never pulled the "I'm sick" card. She always smiled - even when she felt horrible. She was truly the most amazing, strongest, most faithful, most loving and caring person I have ever known. I am her polar opposite, now since 2009 trying to be more like her. Failing at times, looking up and begging for her forgiveness when I do fail. :-) She was my rock - my best friend - my confidant - as well as my mother. I continue the awareness and continue giving support in her honor. I know it is what she wanted. She and I did most of her journey alone. She would not want others to be alone. So September is a tough month. But we have to keep making it a GREAT month by letting our voices be heard, raising awareness, helping on the road to a cure, helping to shorten the time to diagnosis so that people can better learn to #LIVEwithPF as long as possible. So that hopefully some day those people that continued to LIVE with get to enjoy that cure that is one day coming to them.

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Nygaard Charmaine avatar

Nygaard Charmaine

September is difficult, there is a change in the air, making it more difficult to breathe. This is a nice explanation you wrote. Scleroderma and ph crept up on me. I was in a Senior Olympics swimming meet . Always an excellent swimmer… dove in at the sound of the whistle and had to be pulled out. It was impossible to breathe. Stay the course and do the best you can. Thanks for the inspiration. Charmaine

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Dennis Jackson avatar

Dennis Jackson

Charlene---I'm a "doctor," but I'm a doctor of English literature, and the only thing I can "fix" is your faulty commas! (And for an extra price, I'll fix your semi-colons as well.) But my doctorate does qualify me to tell you that your piece on "September" being a difficult month for you as an IPF patient was a very readable, well-detailed, thoughtful piece. I taught Journalism at an eastern university for 29 years, and so I feel confident in assigning your good essay an "A." Sadly, these days, that (grading papers) is about all I continue to feel "confident" about. THANKS for your effort (here and in other pieces you write--I learn a lot from your work).

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Charlene Marshall avatar

Charlene Marshall

Hi Dennise,

Thanks so much for reading my columns and reaching out via the comments -- I appreciate your stamp of approval, doctor! ;) I will continue to write as hearing from others that my columns are helpful is both motivating and appreciated. Thank you for reaching out and hang in there: this disease is awful but there are others who understand and will be here for you. Take care, Char.

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Steve Dragoo avatar

Steve Dragoo

Dear Friend,

What a compelling story you have shared and I can identify with you on many issues we deal with daily. I am inspired by your openness and desire to expose ILD/IPF to the world. Yes, it is astonishing to me too, awareness of this disease is hidden from so many that could become proactive and help the cause progressively.

I might suggest that some of the best writers at PF News/Bio News create a persuasive email series and/or an outbound calling campaign coupled together to target the US and Canada (other countries - UK, Japan, Aus, others?) legislative bodies of these governments.

There are more positive-looking trials in various phases that look promising for us with ILD/IPF. That's encouraging...

I will email you with some more ideas shortly.

Thank you for your courage!
Your friend Steve

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Charlene Marshall avatar

Charlene Marshall

Hi Steve,
So nice to hear from you friend, as always!

Thanks for your kind words on my column and sharing that they are relatable; we need to band together and as you say, illuminate or expose the word of ILDs/PF. Not a bad idea to compile a letter or email series to the government. I do know some agencies with a lot of medical professionals on their side are doing this actively, I hope they get somewhere. The clinical trials are indeed encouraging, but I just hope something happens fast. Take care and as always, keep in touch!
Char.

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Betty Stafford avatar

Betty Stafford

Thank you for sharing your experiences. Perhaps future patients would benefit from the removal of the designation of “rare” as the official designation of this disease. Improvements in research, diagnosis, and treatment could result.

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Charlene Marshall avatar

Charlene Marshall

Hi Betty,

Thanks for reaching out and reading my columns. I agree with you - the designation of "rare" is really frustrating as it certainly doesn't feel like IPF is a rare disease to us. I know so many people living with it! That said, it's a global definition based on numbers diagnosed, from my very basic understanding, that coins the disease a "rare" one. With more people unfortunately being diagnosed post-COVID though, that designation might soon be lifted. You certainly raise a really good point!
Char.

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Judy Krasovec avatar

Judy Krasovec

Yes Sept is a difficult time! Every thing dying and cold weather was never a good time for me. Now I have IPF and COPD so it's really hard to breathe! I was on 2 liters for some time but now after a few trips to hosp. I'm on 4 + liters so it's hard to manage my oxygen to go many places! This year I seem to be having anxiety problems ( not ever bother before) so wondering if it's from staying home and being safe! As I'm used to being pretty social. Also all the news is bad! Does any one else have this problem?

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Charlene Marshall avatar

Charlene Marshall

Hi Judy,

Thanks for reading my columns and reaching out via the comments. YES - since the pandemic, I have also been struggling more with anxiety and I know lots of people who are as well. It feels like a layer of us (the social layer) has been peeled away, exposing some pretty raw emotions, thanks to the pandemic, doesn't it? Hang in there and do reach out for the support - the forums are a great place to connect with others who really "get it" and we are here for you. Take care,
Char.

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Randall Thornton avatar

Randall Thornton

Sept, that use to be the month my wife and I would take our vacation. After Labor Day, the prices would drop, the kids back in school so vacation spots not so crowded. Now, Sept is not like we remember. I was diagnoised with IPF the spring of 2020 after 4 months in the hospital and exploritory surgery. I am on 24/7 oxygen at a min liters of 5. I have lost 1 lung. If I try to do anything, my breathing sounds like a race horse and I need to up my oxygen. This also makes it pretty much impossible to go on a vacation because i am restricted to the altitude I live at. So, we are sort of in a depressed mood by not being able to visit kids, grandkids. I am hoping that next Sept I have improved so we can go someplace. Setting at home for over 2 years is boring. So, hope everyone is able to enjoy the fall colors and think of Thanksgiving and Christmas as a festive time.

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Charlene Marshall avatar

Charlene Marshall

Hi Randy -- I will keep my fingers crossed for you that next September things are much improved and that you and your wife can go somewhere, and/or see the grandkids. I know how fulfilling travel can be, and how hard it is to be tethered down (literally and figuratively) by this awful disease. I hope you can find time to enjoy the fall colours, Thanksgiving and Christmas too. Hang in there and thanks for writing
Char.

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