Controversial Conversations: A Chronically Ill Patient’s Perspective

Charlene Marshall avatar

by Charlene Marshall |

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Controversial conversations are never easy to navigate, regardless of age or experience, especially when engaging with people you love.

Since the start of the pandemic, the number of controversial conversations has increased, and the reactions to conflicting opinions have intensified. Social media disputes are often crass, cruel, and filled with vulgar language.

As a therapist, part of my job is to actively listen to clients and problem-solve with them from their point of view. So, I rarely deal with controversy in professional conversations. However, personal conversations about pandemic controversies leave me feeling unsettled and anxious.

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Early on in the pandemic, many people refused to wear masks. A lot of inaccurate information circulated on the internet, and people developed their own theories about masks and whether they would actually protect against the virus.

Lately, controversial conversations focus on vaccines and their safety and effectivity. Unfortunately, the United States has a resurgence in COVID-19 cases, primarily among the unvaccinated. This seems to be changing the minds of some people who were previously skeptical. Nevertheless, many controversies still abound about the vaccine.

To be clear, this column doesn’t seek to convince you to wear a mask or get vaccinated. I try to respect that everyone has different opinions. But I believe in science, because my life depends on it.

In 2016 doctors diagnosed me with idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease without a cure. Disease management, and ultimately my survival, depend on current and developing therapies, research, and transplantation efforts driven by science.

I must believe in science. I’ve successfully survived the last five years on the advice, care, and support of doctors and researchers, along with many other allied healthcare professionals, many of whom are on the front lines of the battle against COVID-19. So, I have a hard time when people choose to doubt or defy science-based advice given to curb the spread of COVID-19. This is why controversial conversations are so difficult for me to navigate.

Often hidden among the controversies about COVID-19, mask-wearing, and vaccines is an underlying negativity toward science. Chronically ill patients who wait desperately for a cure or treatment options for their disease can’t focus their limited energies on being negative toward science — we depend on scientists’ efforts too much. This is often something healthy people don’t understand, and they may not realize how their words can hurt us when in the thick of controversial conversations about COVID-19.

I would love to hear how you, as fellow chronically ill patients, are handling the controversial conversations you’re also likely having in your own personal circles. How do you have healthy conversations, and how do you cope amid the relationship-wounding controversies? Please share in the comments below.

***

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

Dan O'Leary avatar

Dan O'Leary

What steps have you taken to get the five years since your diagnosis?

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Ron gilles avatar

Ron gilles

Hi :) after quite a few attempts at having a civil conversation about vaccines.
I have come to the conclusion the those not vaccinated are unable to calmly converse on this topic .

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Charlene Marshall avatar

Charlene Marshall

Ron, I love this reply -- you are absolutely correct :)
Char.

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Hans Fink avatar

Hans Fink

Hello Charlene,
Agreed that this is indeed very controversial. My response to the vaccine sceptics is that I am terminating social contact with them.
It is too risky for us IPF patients to associate with them.

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Carol Dyck avatar

Carol Dyck

In 2014 X-rays taken for a shoulder replacement showed scarring on my lungs! IPF was not actually diagnosed until 2016. The beginning of 2019 I started on oxygen 2 Ltrs and began 150 mg of OFEV in January 2020. At this point in time (Aug 5, 2021) I’m on 4 ltrs of oxygen and 100 mg of OFEV.

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Meredith Edmondson avatar

Meredith Edmondson

I received the diagnosis of IPF 4 months ago. I was very confined and inactive four a full year after COVID-19 first appeared in my small town. I experienced some SOB but thought I had just become out of shape from lack of exercise and began a modest walking regimen. The SOB made it impossible and my bloods at was down. (I also have apnea). After I was finally able to see my PCP who ordered a chest X-ray and treated me for pneumonia but it returned three weeks later. She referred me to my pulmonologist but his nurses kept saying they had no referral. I finally sent a message to the triage nurse and begged for an evaluation and treatment plan. Got an appointment that day. The NP looked at the X-rays gave me some oxygen so I could breathe and immediately arranged for apimonary function test, blood work to search for causes, and ordered an HRCT of thorax, she gave me a provisional diagnosis of ILD, prescribed oxygen during activity, I had the test and the IPF diagnosis. Two weeks later I began treatment with OFEV.
The reason for this long story is that all people need to know that shortness of breath is not normal or part of aging. It means something is wrong. That said should must be your own advocate and insist on being evaluated. You may feel uncomfortable being a pest or demanding lung disease is not something that goes away. It keeps on getting worse and you may become severely disabled. Take care of yourself like you would take care of a child and don’t give up on finding the answers.

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John G Garner avatar

John G Garner

Hello Charlene, I have a question that I cannot get an answer to. It doesn't really apply to your article above but I have read many of your responses to people around the world with IPF. I respect your opinion and saw your name so I thought I would ask you.
I am nearly 74 years ago and I have been diagnosed with IPF a little over a year ago. I am not on oxygen and I have been feeling better the last couple of months. I am on 100 mg of Ofev twice a day. I am a strong Christian with a strong faith in God. A couple of months ago I was prayed for the healing of my IPF. I believe that I am healed, partially at least. Here is the question: Have you ever heard of anyone with IPF getting better or getting over it completely?
I read the forum every week and I have never read of anyone getting better. I look forward to your answer.
Thank you.

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Sue Bailor avatar

Sue Bailor

I always say "Every day is a good day". I have been living with this over five years-had my tears and depression, my laughs and happiness too. I survived Septic Shock during this time, In had to learn to live all over again-so I feel that I can survive-We all have that chance, don't let it pass-remember Every Day is a Good Day!!!!

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Holly W Patient avatar

Holly W Patient

Hi, Charlene
A few days ago, I canceled my appointment and said good-bye to my hairdresser of twenty years. She is not and will not get the covid vaccine. We handled the conversation civilly and kindly by not discussing the "why's and why nots." She has become a friend, and it hurt, and I'm left still not understanding her reasons.
With Christie's upcoming wedding celebration in our backyard, the question/ problem comes up over and over, causing her (and me) great anxiety as the delta variant surges. We try to use intermediaries to have "the conversation, " so a sister talks with her unvaccinated sons, a daughter broaches the subject with her parents, etc. As hosts, and as one of several vulnerable people in the party, we try to communicate the importance of the situation, without personally addressing the folks who need to hear it. We've had some success but frankly, we are still worried. I am finding it harder and harder to be understanding and polite! We have hired a wedding coordinator for the day, who will enforce mask- wearing in a kindly way. You have brought up an important subject!

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Brenda Gaier avatar

Brenda Gaier

I am happy to hear so many are making it to 5 years. Makes me wonder what the average life expectancy is. I'm new to this. May of 2020 I got a letter from my GP saying I possibly had Interstitial Pulmonary Fibrosis. Because of Covid-19 I had to wait for a Pulmonary Dr to start taking patients. That took until March. I was told by him he wanted me to see a specialist in MN. I finally got an appointment June 1st. I have seen so many different specialists and still know very little. I read all the articles I can find but I'm still lost. How long did it take for you to find out where you are in this disease? I was put on oxygen 3 weeks ago because my level goes down as soon as I do much. I'm also on 20mg Prednisone and a Bactrim antibiotic. This all started about 2-3 weeks ago. My chest doesn't ache as much but I still can't do much before I need to use the oxygen. Does that get better ever? I'm tired almost every day. In October I have all the tests again to see how fast this disease is progressing. Is that when I get more answers? I realize this is a hard disease to predict but I'm one that always needs answers. This is hard. My family and friends don't realize that this is a serious illness. I'm trying to wrap my head around it and they either don't ask questions or expect me to be as active as I was. I'm 69 so I was slowing down already. I have a lot of changes to consider before I commit to something. I'm not planning on becoming a house hermit so how have you all handled this change? Thanks for any information. Prayers to all.

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Joe Pierce avatar

Joe Pierce

Thanks, Charlene!

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Steve Dragoo avatar

Steve Dragoo

Hi Charlene,

Great article and your interest and sincerity are clear. I avoid heated discussions about covid or my 5-year trek with IPF because some fiercely cling to their opinions and even a swift 2"x4" to the head would not change their direction and I do respect others' opinions instead of shutting them down. I think being in sales and marketing for over 35 years has helped temper my responses generally.

I believe a healthy dose of skepticism regards western medicine is needed. "Officials" have been all over the place for the past 20 months and we all can learn from that. The W.H.O. has been a disaster especially in their efforts to cover for the ccp. Since I worked in cardiology many years ago, have 2 doctors, and a few nurses in the family, I believe it is incumbent on me to look at any potential source for improvement of IPF without chasing my tail.

I am especially happy to have discovered Pulmonary Fibrosis News and wonderful people like you and I look forward to continuing our journey.

Stay well...
Steve

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Charlene Marshall avatar

Charlene Marshall

Hi Steve,

So nice to hear from you my friend, as always. Thanks for reading and commenting on my column! I am feeling more and more supported to hear from others that they too avoid controversial conversations (ie. about vaccines or COVID) or don't expect to change their opinions. I take this approach too and feel less alone after reading all these comments!

Take good care and keep in touch - we love having you as part of the PF News community too!
Char.

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Mimi Daniels avatar

Mimi Daniels

Thank you for this. You’ve given me the perfect response to all the anti-masker/science-doubters I’m surrounded by. “Science has kept me alive for 17 years..” (Including an experimental (at the time) stem cell transplant in 2007.)
I’m so tired of having these conversations and facing how selfish people are.
Thank you!

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Charlene Marshall avatar

Charlene Marshall

Oh you are so welcome, Mimi - I'm glad it is helpful to you! I also am so sick of having these conversations and how selfish people are being by choosing not to get vaccinated. It's like the "collective good" is out the window for most, which is really frustrating. This is the angle I'm taking - science has kept me alive and I need to depend on it for my future too... basically saying: don't argue with me, as a result. It's really hard, isn't it? Feel free to vent anytime, we are here for you!
Charlene.

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madonna Kennedy avatar

madonna Kennedy

carol,similiar to you i was diagnosed when getting a pulmonary and cardiac ok before Hernia surgery . ( which was never done because of the IPF.) I too am on oxygen 24/7. 4liters when doing nothing, more if i am exerting myself( and it doesn’t take much exertion) 6 liters I am getting no better but no worse !

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