How I Selectively Share Updates About My PF Experience
Most of my friends and family members would say I am an open book about my chronic illness. After the initial shock wore off from being diagnosed with a life-threatening lung disease at 28, I decided to share my story through writing. Serena Lawrence, the late senior managing columns editor for BioNews Services and a friend, convinced me that others would want to read about my life with idiopathic pulmonary fibrosis (IPF). This column is the result.
Throughout the years of writing for Pulmonary Fibrosis News, I’ve shared some pretty personal details, including my emotional outbursts, cognitive difficulties, physical changes, and even how some of my most important relationships have suffered as a result of IPF. I also spent time writing about the grueling recovery from two acute exacerbations I’ve had in the four years of living with this cruel lung disease. Given this, some readers might agree with those who say I am an open book about my experience with IPF. But this really isn’t the case.
When I receive bad news at a doctor’s appointment or face results of a pulmonary function test that show further disease progression, I am selective about whom I share it with. As an empath, I worry about how bad news will affect those who love me. Sometimes, I choose not to share that information and summarize the appointment as “nothing new to report.”
Have you ever been concerned about telling someone difficult news because you’re worried about how they will handle it? If so, you know it can feel like being caught between a lie by omission and the guilt of upsetting people with difficult news. Neither feels good to any patient living with a chronic illness.
The reason I wanted to write about this and reflect on how I’ve chosen to share updates about my experience with IPF, both good and bad, is because I’ve been unwell lately. I have been experiencing what appear to be symptoms of COVID-19, but they could be from other viruses circling the globe, though we seem to have forgotten about them.
I also might be experiencing yet another progression in my disease in which my symptoms mirror an acute illness. Ultimately, explanations abound as to why I am feeling unwell, and I worried about informing my friends, family members, and colleagues about these symptoms.
Of the close friends I did tell, all had an opinion about how I should proceed with being evaluated, especially at a time when being in the hospital is not ideal for someone who is immunocompromised. It was hard to navigate many differing thoughts, and it wasn’t until I spoke with my transplant team that I felt better about being seen in the emergency room for an unusual symptom.
After being discharged, and over the next few days, my phone didn’t stop alerting me to text messages from friends and family asking how I was feeling. I am not complaining about this. Of course I understand that it is because they all care. But their level of concern and the amount they’re worried about me leave me feeling guilty.
One lesson I am working on is whether I can internally “hold onto” the actions, feelings, or thoughts of others. Most of the time I can’t, so I speak my truth and hope those I choose to surround myself with understand and respect me for it. In the context of sharing my IPF journey, this is a lesson I need to remember: How people respond to the information I share, whether good or bad, is not something I should take on. However, this is easier said than done and is a big factor in why I remain selective in sharing both results and updates about my life with a chronic lung disease.
As we continue to investigate the cause of these unpleasant symptoms, I continue to decide how much I should share with those closest to me and think about my reasons for being selective about it. So far, this has worked out well for me, but I also am aware it is something I can always improve.
How do you decide when or how much to share about your chronic illness journey? Are you more of an open book or private when it comes to your IPF/PF story? Please share in the comments below.
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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.
About the Author
Comments
Maureen Terhune
My dear Charlene,
Your post brought back memories of how difficult it was to tell our (grown-up) sons my diagnosis. At the time it was IPF, but was later re-classified as NSIP. And when I told them, how much should I tell them? I tried to keep it simple and not go into frightening details, but of course they could look up everything on-line.
With my close friends and family, they now know the details and the results of any tests I have. With more casual friends I've found that if I vaguely say a "lung disease" they assume it's COPD. So it's difficult - how much to say?
I do have to tell my husband and some close friends when I have new symptoms or the old ones get worse, but I always try to tell them that this is to "explain and not complain" and I find that helps my guilty feeling that I am maybe making my ill health the centre of everything.
That being said though, for those of us with lung disease, in this time of COVID-19 we have to factor in our vulnerability into every decision we make. And I hope and pray that you don't have this disease. As you said, there are other viruses doing the rounds, but you certainly don't want any of those either.
Your postings are so helpful, Charlene, and so much of what you say resonates with me. You are in my thoughts and prayers.
With love,
Maureen
Charlene Marshall
Hi Maureen,
Thank you so much for reading my columns and reaching out via the comments. Your kind words truly brightened my day, thank you.
It is so tough to gauge how much to tell our loved ones about our diagnosis, but you're right, with access to the internet and the often frightening (and outdated) information can leave them feeling very scared. It is all about finding a balance between sharing the information and protecting others, though that balance is not easy to find. I do like the words you chose "explain, not complain" when sharing new symptoms, that is really helpful and I know many who would benefit from hearing this so I may share it, giving you appropriate credit of course. I have a column coming out next week about COVID-19, and I hope it'll bring some hope to others during this tough time. Thank you again for your kind words, they really helped lift my spirits on this beautiful Saturday here in Canada. I appreciate you, and keeping you in my thoughts and prayers as well Maureen.
Hugs,
Charlene.
Rene Hakkenberg
Charlene, you have been an inspiration for all of with this relentless and cruel disease, despite being back in the hospital several times and suffering through countless setbacks. Through your words you have made so many of us feel better and more accepting of the disease. I am sure I speak for the entire IPF community in thanking you and showing our immense appreciation for all you do for us, including the sharing of your personal and relational hardships which are also helpful to us. Let’s all hope and pray for the mother of all cures. René
Charlene Marshall
Hi Rene,
Thanks so much for reading my columns and reaching out via the comments - as always, it is so nice to hear from you! I appreciate your kind words more than you know, as the last few months have indeed been filled with hospitalizations and setbacks. Here is to a wonderful new months ahead, when covid-19 is under control and we resume some "normalcy". I am right there with you in hoping for a cure for this cruel disease - I hope all the respiratory research being conducted/sparked by covid-19 illuminates some crucial findings that benefit all of us. Thanks again for writing, and stay well.
Charlene.
Holly W Patient
I think we IPF folks all struggle with who to tell what, and when. Looking back, I have messed up in both directions-- filling in a co- worker/ friend on a break at work (ruined her breakfast and her day), and keeping the severity of the situation from my daughter, who was going through her own issues, so that she got the unexpected news that I needed a transplant as I was air- lifted to UCSF.
All we can do is follow our instincts, do our best, and hope that everyone around us realizes that this is one small piece of our lives we, and no one else,can control.
Worrying about our loved ones is an added, and unfortunate, reality, and I guess all we can hope for is that each relationship, family or friend, will grow stronger. That has certainly been the case for me (see today 's Courage to Care).
Charlene Marshall
Hi Holly,
Thanks for reading my columns and reaching out via the comments. It means a lot! You're right regarding the struggle of how to share our disease, with whom and when. I always tell others newly diagnosed and struggling with this that there is no handbook on how to do it right, we just try our best, which I know you did in the past. You're very right about following our instincts and doing our best. It is such a hard thing to navigate, as worrying others is a very unfortunate part of this cruel disease. So glad to hear your relationships have evolved and grown stronger, sounds like you have a wonderful group surrounding you... I'm so thankful for Christie's friendship! Take good care, and thanks for writing.
Charlene.