I’m Seeking Solutions to Workplace Struggles
When I set out to establish a career some years ago, I couldn’t have foreseen that many of the skills that set me apart as a desirable employee would eventually be lost to a fatal illness. Unfortunately, this is now my reality as I continue my battle with idiopathic pulmonary fibrosis (IPF). While IPF has significantly impacted all areas of my life, I believe my ability to work efficiently and be a competent employee has been compromised the most.
After I was diagnosed with IPF in 2016, I took some time to digest the news with my friends and family by my side. I planned to be strategic and intentional about how I chose to tell my employer about my life-threatening lung disease. I thought it would be best to be open, honest, and transparent about how this illness could affect my performance in the future. Before my disease progressed to where it is now, I thought naïvely that my physical limitations would have the greatest impact on my performance at work. I had no idea how much my cognitive abilities, tolerance for what I view as unimportant work, and patience would be affected by IPF.
Lately, I’ve been having a lot of conversations with my director about my disease, accommodations in the workplace, and how she feels it is affecting my performance. Of course, it is! It’s not realistic to assume that living with a life-threatening lung disease wouldn’t affect me at work. However, she can’t know all of the things I am struggling with, or why I am finding it very hard to be at work these days unless I tell her. I have some fear about doing this though, for fear of reprimand. I am embarrassed, too, about disclosing the elements of my job that have become difficult for me as a result of my IPF. A healthy 30-something employee would not be facing these challenges.
My very talented friend and fellow columnist Kim Frederickson wrote a piece about telling others about your IPF. Recently, this was a popular topic in our Pulmonary Fibrosis News Forums. I know it is important to disclose your illness to your employer. However, I am finding the conversations about it, even if it is to help me in the end, exhausting. Last week, I became so frustrated with the situation at work that I wrote a resignation letter. Once I’d calmed down a bit, I realized that this was perhaps a little overreactive. My director and I are continuing discussions about how I can work safely considering both my physical and emotional health.
Following are the things I am struggling with in my workplace:
- Impatience: While I’ve never been the most patient person, I certainly had more patience before my IPF diagnosis. Talking about something over and over again bothers me. I can barely sit through meetings when a topic on the agenda has been previously discussed. I have no interest in investing my time in repeated conversations, even if it is for a better outcome (for example, to establish a more streamlined process to help us with our work).
- Forgetfulness: With the type of work I do, it is important to document conversations and interactions with families, and lately, I sometimes forget to do this. When this happens, I have no reference for a conversation a family brings up, which is embarrassing for me. It also complicates things for my colleagues who try to cover for me, but I don’t know how to help this.
- Trivial conversations: Nothing bothers me more than discussions I deem trivial and “unimportant” in the grand scheme of life. When faced with a life-threatening illness, it becomes very obvious which conversations are meaningful and which ones aren’t — and I’ve grown impatient and intolerant of the latter.
- Discomfort from sitting: IPF affects physical abilities, even when just sitting for long periods at a desk and during meetings. My joints get sore, and when I am uncomfortable, I am even grumpier and intolerant. Unfortunately, my job requires me to be seated, so I don’t know how to work around this.
Do you have any suggestions — other than resigning — to help with these workplace struggles?
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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.
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Comments
Lorena McManus
Hi Charlene,
You sound so much like me when I was working! The impatience, the intolerance for trivial conversations, forgetfulness, all of it! Before I was diagnosed with with PF I had several other chronic diseases including rheumatoid arthritis and chronic abdominal pain related to radiation damage to my large and small bowel from cancer treatment. I was also becoming very tired and short of breath which was the beginning of my pf symptoms. I was known as a very patient, clear thinking Director who had generally good relationships with staff and colleagues alike. I found myself turning into someone I didn’t know. Many of my insights came after I had to to leave my job. I believe the most important factor is sleep and rest. Your job sounds very demanding. Do you work part or full time? Would you be able to reduce the hours you work? Lack of adequate rest contributes to all of the behaviours you outline. Also, you mention discomfort. Is pain controlled? Pain affects everything; memory, patience etc. So some things to consider that helped me. I was also around your same age when I was going through the same thing. Eventually I had to leave the career I loved but it was the right decision. My wish for you is that you can continue to work for as long as you desire. Lorena
Charlene Marshall
Hi Lorena,
Thanks for reading my columns and for getting in touch with me - this topic is really important to me, so I appreciate the effort you put into your reply, knowing you can relate to what I wrote about. This brings me a lot of comfort (though I wish neither of us had to live with this disease) so thank you for that :)
Like you, I feel like I was hired/a desirable employee for my patience, clear-thinking and ability to be flexible when it came to meeting the needs of the families I support. I still try to be this way, but there is no doubt in my mind that my abilities have changed significantly. The irritability, frustration with trivial conversations and forgetfulness are very real in my daily work life and I don't know how to help others understand why this is occurring. This is primarily because I don't understand why its happening within myself yet! Like you, I absolutely feel like someone I don't know/like when I am at work and I can't get out of the office fast enough to the comfort of my home where I do feel like myself.
I work full-time, and it is pretty demanding and intense at times: dealing with people's lives is "messy" as I say. I've had discussions about reducing my time at work, but my Director doesn't think my role can be done with reduced/part-time hours, although that Director has just left. Maybe it could be worth it to explore this with the new Director, alongside HR. Those are definitely really helpful things to consider,thank you for sharing. For the most part, my pain is controlled but I am dealing with muscle/joint discomfort following a car accident on top of the IPF so I probably could do better at managing that pain. I try not to take a ton of medications, and have just had my chair/desk adjusted by an ergonomist in hopes of helping my neck/back issues. This might help too! I think leaving a career I love is not too far away actually, and I might reach out to you for some support/guidance when that happens as I know you can relate. Thank you so much for your time/energy into this post, and for giving me some support. I really appreciate it.
Happy holidays
Charlene.
Steve Daggett
Hey Charlene!
It's been a while since I've updated you post-transplant.
As you may recall, I had a single lung transplant on September 26th (2018). As of the day after surgery, I have been off oxygen and my O2 sats have been in the mid to upper 90s ever since!
But that's not to say there haven't been complications.
Case in point... about 4 weeks ago I started coughing again pretty regularly. I still have IPF in my native lung (right), so I thought it may be attributed to that. The following week I began getting short of breath much more frequently. My pulmonologist ordered a CT scan. When he got the results he immediately admitted me to the hospital and scheduled a bronchoscopy the next morning.
I woke up the following morning in ICU and intubated (the MOST uncomfortable experience I've ever had). They tried to keep me sedated, but it didn't work. I was awake for the next several hours with the tube in my throat. I was also in hand restraints so I wouldn't pull out the tube. I was constantly gagging. Thankfully, they extubated me and put me on high flow O2 (60L at first!), then tapered off until the next day, and I was on room air again! I ended up staying in the hospital for 10 days. I have now experienced my first rejection episode! My doc said, "there's rejection, and then there's REJECTION" his emphasis. Mine was very serious. They couldn't give me enough oxygen (hence the intubation). They radically increased my anti-rejection meds while in the hospital, then have slowly tapered them down. The recovery for this episode is taking far longer than my transplant. They had me up walking the day after my transplant, but this visit they didn't walk me at all. I was either in bed or in a chair. I also had 5 days of plasmapheresis (they run by blood through a machine that replaces the old plasma with new). I also had a couple rounds of antibody infusions through a port in my neck.
I'm still really weak from the whole ordeal, it's been 10 days since I was discharged. I've started pulmonary rehab again, but it's taking a long time to gain my strength back...it really took a toll on me. HOWEVER...I can breathe on my own again - and in this I can be thankful!
I knew my life was going to be different after the transplant - I just didn't realize how different it was potentially going to be!
No regrets, just a new reality!
I still think it was worth it!
I hope your journey is going relatively well. I saw you were having some frustrations at work. I can totally relate!
Merry Christmas to you!
p.s. My doc cleared me to fly home to Oregon for 2 weeks at Christmas! I've been living in LA since April. It will be good to be home for the holidays!
Charlene Marshall
Hi Steve,
I am so happy to hear from you, as I've been wondering how you've been managing since your transplant. So sorry to hear about that first bout of rejection - that must have been so scary! I remember being intubated in May 2017 following an acute exacerbation, and I still have a lot of trauma around that actually, as I completely agree with you; it is by far the most uncomfortable thing I've ever experienced. Gosh, how scary this must have all been for you. Did they say anything triggered this first episode of rejection, or does this/can this just happen post-transplant? So appreciative and admire your attitude in all of this Steve, it must contribute to your recovery so much. I can see how grateful you are to be able to breathe on your own again. Really glad to hear you still think this process is worth it! Keep in touch and please do let me know how you're doing from time to time, I think of you often!
ENJOY your time at home in Oregon for Christmas, what a wonderful gift that is to be able to spend the holidays with your family!!
Take care and Merry Christmas!
Charlene.