Avoid Toxic Positivity to Help PF Patients

Avoid Toxic Positivity to Help PF Patients
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I began hearing the term “toxic positivity” this year, and the pandemic has illuminated the term’s meaning for me.

According to The Psychology Group in Fort Lauderdale, Florida, toxic positivity refers to “the excessive and ineffective overgeneralization of a happy, optimistic state across all situations.” Since the beginning of the pandemic, I’ve encountered people and phrases that fit this definition several times.

Upon further reflection, I can also apply this definition to various situations I’ve encountered since my idiopathic pulmonary fibrosis (IPF) diagnosis four years ago. Despite having good intentions, some people just don’t know how to respond to those with a chronic illness. These people are often guilty of toxic positivity.

I have met many patients who customize descriptions of their chronic illness depending on the person with whom they’re speaking. More specifically, I know patients who intentionally leave out the fact that their illness is fatal in new relationships.

I am guilty of this as well. In the majority of conversations, I neglect to tell others that IPF is fatal (without a lung transplant). I never know how people will react, and sometimes their responses are frustrating and upsetting.

Since my diagnosis, I have twice been asked, “What are some of the dumb assumptions people make or stupid things they say to you as a young adult living with IPF?”

I shared my answers with an amazing author friend, Kristan Higgins, who will be publishing a book about IPF in 2021. When people say dumb things, they are often well-intentioned, but some of the hardest comments to hear are those intertwined with toxic positivity.

The next time a friend, partner, or loved one shares something difficult, I challenge you to sit with them and absorb their pain. It will be uncomfortable and awkward. However, being present and not trying to fix the situation will be a welcome change from unrealistic, positive phrases about how things will get better. This is especially true if a situation won’t improve, such as life with a progressive illness.

When friends and family try to minimize the difficulties we face by verbal-vomiting various positive phrases, it can be harmful. Toxic positivity can be dangerous because it often invalidates a person’s struggle.

Instead of relying on comfortable and familiar phrases when helping someone through a difficult time, I challenge you to react differently. Be realistic, be honest, and don’t suppress the patient’s emotions. If you don’t know how to react to a loved one’s difficult news, an easy solution is to ask how you can help.

Following are some of the most common examples of toxic positivity. Do you have any ideas on what you could say instead? (Hint: You can find some great solutions online!)

‘Don’t worry. It will get better.’

Not only does telling a patient not to worry invalidate their struggle, but the second part of the statement simply isn’t true. Unfortunately, IPF is progressive, which means a patient’s health won’t get better and is likely to get worse.

‘It could be worse.’

This may be true, but I can assure you an IPF patient is thinking it could also be better. Being unable to breathe is one of the most difficult things to endure. Your lungs can never take a break, so no amount of rest alleviates the pain and difficulty of feeling short of breath.

‘Don’t think about it. Stay positive.’

It’s nearly impossible not to think about IPF, especially when the shortness of breath or chronic cough that patients experience is present everywhere they go. This also makes it difficult to stay positive.

‘Everything will work out.’

For IPF patients lucky enough to receive a lung transplant, things may work out in the short term. New lungs are unfortunately not a cure, but rather another chronic illness to deal with. While often welcomed, as they improve a patient’s ability to breathe, lung transplant is not without its challenges. Also, very few patients end up receiving a transplant, so there is often a sense of hopelessness that things won’t work out in the end.

Please share any other forms of toxic positivity you’ve experienced since your IPF/PF diagnosis 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.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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  • toxic positivity, peer support, before and after, exercise, power outages, productivity
  • toxic positivity, peer support, before and after, exercise, power outages, productivity
  • toxic positivity, peer support, before and after, exercise, power outages, productivity
  • toxic positivity, peer support, before and after, exercise, power outages, productivity

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8 comments

  1. Zach Adams says:

    Thanks for that essay. I agree that it’s hard to have people cheer you up with thoughtless or ignorant statements that they think might make you feel better. I do think however that you can be hopeful and positive. I’ve had IPF for almost five years and I’m going to be 69 years old in a couple of months. Realistically a cure or breakthrough in treatment for IPF may not come in time for me, but it will come and I don’t think it’s wrong or bad for you to cling to that hope.

    Someone told me that the best advice is to prepare for the worst but hope for the best.

    • Charlene Marshall says:

      Hi Zach,

      Thanks so much for reading my columns and reaching out via the comments. This was a tough topic to write about because everyone who shares “toxic positivity” is usually well-intended, but their comments don’t often make us feel better. I do agree with you, that you can be hopeful and positive and actually, I’d argue that this way of thinking is actually what has helped me most over the years. Clinging to hope is so important! Good advice to think about too, thanks for sharing that. Take care and thanks for writing!
      Char.

  2. Denis Ryan says:

    Hi, my name is Denis Ryan and I live in Ireland. I am 79 years old & I was diagnosed with IPF nearly 2 years ago & given 3 to 5 years to live. I take OFEV @ 100 mg twice a day (decided by myself, as the consultant left it up to me to decide!) & have very little side-effects (small lack of appetite & shortage of energy).I play 9 holes of golf twice a week in a Buggy Cart as I cannot walk the distance any more.I’ve been told I cannot have a lung transplant as I am considered too old. I’ve never smoked and have always exercised regularly. With Coved 19 I am doing armchair exercises twice weekly via internet sites, golfing twice a week, walking or gardening other days. I am reasonably confident I can overcome the consultant’s statement of 3-5 years & prove him wrong. I’m new to this Forum & find it interesting & beneficial.

    • Charlene Marshall says:

      Hi Denis,

      Thanks so much for reading my columns and reaching out via the comments. Welcome!

      I’m so glad to hear that you don’t have many/have very little side-effects from the 100mg/2x daily Ofev dose. That is great news! I know a lot of people who really struggle with side effects from this drug. Kudos to you for keeping up with golf as well, that’s great. There are a few other members on our forums who are avid golfers 🙂 Keep up the great work with activity and exercises, along with the positive attitude for overcoming the consultant’s prediction; that will take you far! Also, the data from the 3-5 year prognosis that doctor’s usually rely on is very outdated. I know lots of people who have surpassed 3-5 years!
      Take care and feel free to write anytime.
      Charlene.

    • Charlene Marshall says:

      Hi Denis,

      Thanks for your note. We/I get several comments to my email per day on my columns, which I’m very grateful for. Sometimes it takes me 24-48hrs to get through them all and approve the notes. I just approved yours, you’re all set! Char 🙂

  3. Denis Ryan says:

    Thank you Charlene. My apologies. I’m afraid I thought my comments had got lost en route. It is very useful to have a support group for info,especially with a near total lockdown as we now have in Ireland re.the Virus. Keep up the great work that you do. Denis

    • Charlene Marshall says:

      No problem at all Denis! I’m glad you commented and shared some of your experience(s) with us. Glad to hear you’re found support and help within the group, feel free to write anytime. I truly believe we’re stronger together! Take good care, Char.

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