How It Feels When Others See Beyond My Lung Disease
I spent a lot of time crying last week, but for a positive reason.
Idiopathic pulmonary fibrosis (IPF), a cruel and life-threatening lung disease I was diagnosed with in 2016, has often been the reason for my tears. It is challenging to live with a condition that causes debilitating fatigue and compromises the ability to simply breathe. However, I’ve not been focused on IPF the last two weeks because someone looked beyond my lung disease and presented me with an exciting work opportunity.
I love my career in children’s mental health. It’s a part of my identity, and I take a lot of pride in helping others. In previous columns, I’ve written about the difficulties of working full time with IPF, especially with the symptoms of brain fog, physical exhaustion, and shortness of breath. Additionally, I’m often anxious because I’ll tell myself I’m not as strong of an employee as my peers due to my chronic lung condition. But it appears that narrative was very wrong.
Two weeks ago, I was approached about a vacant position in an agency I am proud to work for on a casual basis. The director of human resources (HR) previously talked with me about it, but I didn’t feel confident in some of the skills that were required. I felt I could excel in other aspects of the role, but because it’s a leadership position, I felt the team deserved a manager who had all the required skills. As a result, several months ago I declined to discuss the opportunity further.
When HR approached me about it this time around, they had implemented a plan that would help me develop the skills I wasn’t confident in. Specifically, they are willing to invest in my learning by having someone mentor, supervise, and train me until I feel comfortable in the role on my own. Aside from this, the compensation is also significantly higher than my current position and includes a more comprehensive benefits package and an increase in vacation time.
Despite all of that, I was still hesitant to accept. What if I got really sick again? What if I couldn’t meet the expectations because of appointments or exhaustion? I toyed with these questions for weeks and wept at the fact that I was given this incredible opportunity, but feared IPF would get in the way, as it does with everything else.
I often advocate for person-first language when it comes to chronic illness. In this case, that means I am an employee first and a person with IPF second. The skills I have worked hard to develop throughout my years of schooling and working come before the limitations of my disease. I would say this to anyone if the situation were reversed, and encourage them to be proud of their skills and confident in their ability to do the work. But if I believe that, why have I been so emotional since I was again presented with this opportunity?
Ultimately, I accepted the management position. I’ve done a lot of reflecting since then, and I think I’ve figured out an answer to that question. The director who sought me out for this role saw beyond my IPF and has a confidence in me that I sometimes lack because of my lung disease. I deeply fear being perceived as the “sick” or “weak” employee.
IPF has taken a lot from me over the years, and while working isn’t always easy with this debilitating lung disease, I can still make valuable contributions and deserve to advance my career. I am so thankful when others can see beyond my lung disease and prioritize what I am still capable of doing rather than what is challenging for me with IPF. It’s refreshing and good for the soul.
Did this column remind you of a moment when someone saw beyond your IPF? I’d love to hear from you! 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.
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Comments
Nicole Kouri
Wow, congratulations Charlene. Sounds like you are a fighter. I have been recently diagnosed and reading your article about the IPF smooths my worries and will help me feel way more hopeful for my future. My case is a mild to moderate, and still waiting for the bureaucratic zoo ? to comence the medication. I am very new to all of this and quite hopeful my life remain full and active like it has always been. Your article strengthen this hope. Thank you. You are an Inspiration.?
Charlene Marshall
Hi Nicole,
Thanks so much for reading my columns and reaching out via the comments - I really appreciate your kind words! Sorry to hear of your recent diagnosis, but do know that you can still live a life you enjoy, even if it is more difficult at times. Hang in there and remain positive; it really does help. Goodluck with the medication too, hopefully you can manage the side effects ok :)
Take care,
Char.
Catherine
Charlene,
What a testimony! A delight to have a supervisor who sees potential not limitations. You have been empowered and blessed. Congratulations!
I must say I am proud of and happy for you. And. Happy Easter, if I may.
Catherine
Charlene Marshall
Thank you so much for your kind words, Catherine! I really appreciate the time you took to write me, and yes, I am so grateful for my Supervisor who trusts my skill and has confidence in me. I am going to enjoy a week of R&R and then jump in with both feet, hopefully making her even more proud. Thanks for writing.
Char.
Fred Schick
Charlene, I have followed your posts for several years and want you to know they are inspirational. I know you are very young and most of we IPF patients are not so young. As a patient, I have pushed myself and I know you do, too and that you will be successful in your new job! Keep up the good work...we are rooting for you!
Charlene Marshall
Hi Fred,
Thank you so much for writing and for your kind words! I feel so lucky to know that I have a community behind me rooting for me, and you keep up the good work too! Pushing ourselves with this disease isn't easy but its important for many of us! Take good care and know that I deeply appreciate your words and the time you took to write me today.
Charlene.
Randall Thornton
Hi Charlene. Just read your article about going back to work. Congratulations. I am happy for you. Keep it up and show them they didn't make a mistake. I have wanted to go back to work for about a year now. I live in Colorado and my last part time job was delivering cars around the state. I really enjoyed the work because it was part time, got me out of the house and working with other retired people my age, 70+. But now I cannot. The IPF and the altitude has stopped me because you have to go over Vail which is too high for me. So, enjoy you new job and hope things continue working out for you.
Charlene Marshall
Hi Randall,
So nice to hear from you! Thanks so much for reading my column and reaching out via the comments. Sorry to hear you have desires to go back to work but are unable to at this time. I remember visiting Colorado and the altitude was hard for me, so I can imagine it being difficult for you. Hopefully you're able to find another activity that can bring you equal joy!
take care and keep in touch,
Char.
John Kane
Thanks Charlene. Your story is good reinforcement for keeping a positive outlook.
Charlene Marshall
Thank you so much John! I appreciate your kind words and comments on my column :)
Char.
Joe Platt
It’s great that you accepted the new position. I’m pretty sure it was offered to you for your abilities and what you will do, not for what you think you can’t do. I want to thank you for the articles you post. Enjoy your new adventure.
Charlene Marshall
Hi Joe:
Thank you so much for reading my column and reaching out via the comments. I appreciate your kind words and you're right: I need to remember that I was offered this position for a reason and trust in their confidence in me, not my angst about having IPF. Thanks for writing and I'm glad you're finding my columns helpful.
Sincerely,
Charlene.
Libby Fisher
Congratulations Charlene! I am SO happy for you and I am confident that you will find yourself very well prepared. It will challenge you in new ways and give you a lot of satisfaction. I don't have any similar employment experiences since I have been retired for quite a while, but we all know an important component of living with this disease is being a fighter...getting out there and presenting yourself as you are, with all the wonderful qualities and skills you can share. I guess my similar experience has been in PT after my knee replacement surgery last year... there was no "going lightly" with me because of the IPF... they made me work as hard as I could and it paid off.
I am really so happy for you!!
All my best, Libby
Charlene Marshall
Hi Libby,
So nice to hear from you my friend, thanks for taking the time to read my column and reaching out via the comments. I hope that, as you say, I will be prepared for this position and can perform to the extend they believe I can. I need to trust in their confidence, as so many readers, friends and family have shared and you're right; being challenged in a new way will be really exciting. Kudos to you for working really hard with your knee PT, certainly not easy with IPF and I'm so glad to hear it paid off!!! Keep up the great work, thanks for your kind words and please keep in touch!
Char.
Sybil Whimster
You are an inspiration Charlene. I count myself lucky that at 86 l have none of the usual afflictions of old age. However this makes it doubly galling that my activities are restricted by breathing difficulties. So in the words of Harry Lawther 'keep right on to the end of the road ' and hope it will be sometime yet. I read a 'review about some research about a treatment for lung scarring which sounded encouraging until l got the end to find it was in mice.!
Oh well maybe that is progress.
Charlene Marshall
Hi Sybil,
Thank you so much for reading my column and reaching out via the comments! I'm glad to hear that typical aging ailments aren't bothersome, however, I know it can make the news of having IPF that much more frustrating and difficult. Keep up your positive attitude! Yes, there is lots of research being conducted for our cruel disease but unfortunately most of it remains in the early phases; sorry for the disappointment you experienced with the research you were looking at. I've been there and experienced that disappointment and its hard!
Take care,
Char
You are an inspiration Charlene. I count myself lucky that at 86 l have none of the usual afflictions of old age. However this makes it doubly galling that my activities are restricted by breathing difficulties. So in the words of Harry Lawther 'keep right on to the end of the road ' and hope it will be sometime yet. I read a 'review about some research about a treatment for lung scarring which sounded encouraging until l got the end to find it was in mice.!
Oh well maybe that is progress.