It’s Hard Being the ‘Sick’ Employee
Shortly after my idiopathic pulmonary fibrosis (IPF) diagnosis, my doctor and I had a discussion about employment. While he supported my desire to work at the time, he was very open with his concerns about my ability to do so as my disease progresses.
While he couldn’t give me a definitive answer about when working full-time with IPF would become too difficult, he told me with certainty that it would happen eventually. Over the years, my disease has progressed, and unfortunately, I feel as though working full-time is soon coming to an end.
Some people might wonder why I consider this bad news. In hindsight, people often have told me that leaving work was the best thing they did for their physical and mental health during their IPF journey. I am sure I’ll get there when the time comes, but right now, I struggle with the identity loss that not working would have on me, in addition to the financial implications.
I thrive on stability and routine in both my personal and professional lives. In the last two years, we’ve been through the most intense, rapid, and constant change our agency has ever endured. As you can imagine, I haven’t done well with this, given my desire for consistency and routine.
Keeping up with the changes is hard on everyone. But for someone who struggles with cognition (thought processing), problem-solving, and memory, constant change is a nightmare. These changes have weakened my desire to remain at work. As illness progresses, this trend continues, and it affects the ability to work. It can trump your value as an employee and make you feel as though working is no longer worth it. Unfortunately, this is what I’ve concluded.
It’s hard being the sick employee. My supervisors and I put both temporary and permanent plans in place to accommodate my illness as much as we can. These accommodations are “backups” to the way I think my plans will go. The what-if scenarios also are an issue. It’s exhausting!
Recently, while talking to a member of our leadership team, I candidly had to say, “My disease is not going to get better. Therefore, the plan for when I recover can be thrown out.” I don’t mean to be negative, and there might be times when my disease doesn’t affect my job as much, but they are temporary. This is the reality of living with a terminal illness. I won’t get better, and it’s hard conveying that to people who are trying to make accommodations based on the assumption that one day I will.
A fine line exists between doing things for myself and having others assume they need to help me. While this is always well intentioned at my workplace, it is still difficult to deal with. I appreciate that my colleagues think of cleaning off my car ahead of my going outside in a snowstorm, but I don’t appreciate the assumption that I can’t carry my own bags. I appreciate the help — it’s not that I am ungrateful. It’s just that finding the balance of what I can do on my own versus what I need help with can be awkward and uncomfortable. I simply wish I could do it all on my own.
As my disease has progressed, so have the invisible struggles of living with IPF, such as cognitive difficulties. No one sees or understands this, which also leads to moments of embarrassment and frustration in the workplace. I may be instructed how to do something or informed of a recent change in the process, but unfortunately, I’ll need a reminder. When everyone else on the team grasps changes quickly, it feels awful that I need to revisit them and have them explained again. This often takes place in a group setting, and I am the only one who needs a reminder. Thus, I hold up the group’s progress.
Lastly, I am tired of the sad eyes that new employees give me when joining our team and seeing me on oxygen for the first time. While this isn’t their fault and they don’t mean to convey those looks, I see them and it is hard to accept.
Sometimes, I sulk when I think about life with my disease and how hard it has become to be the sick employee at my workplace. I suppose I should just be thankful that I can continue to work for now and earn an income.
Have you experienced these difficulties of being the “sick” employee while you worked despite IPF/PF?
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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
Donald Otis
Yeah, that's rough. Being that, too, you don't want to be totally defined by your illness. Also, bad news makes your friends feel bad and your foes happy; everyone else, that's just something else to carry. Either they don't really care, or they care too much, and no one understands. So, as much as I can, I just say nothing, suffer in silence - you know, "I'm fine", because, well, I hate to lie to you but I hate to tell you the truth more.
Charlene Marshall
Hi Donald,
Thanks for reading my columns and for getting in touch via the comments. I always appreciate hearing from others, although I wish it wasn't the disease that brings us all together. Appreciate hearing your thoughts on this topic, it sure is tough finding the honest and truthful words when someone asks how we are isn't it? Hang in there and feel free to write anytime.
Charlene.
SpacePro Joe
I experienced 3 year ago when diagnosed with Pf Ild. 2 years later failed the 6 minute walk test in 4 minutes and put on
O2.I use it when sleeping or when doing anything slightly strenuous. Use it 24/7 @ high altitudes (Colorado). On experimental trial drug SOFU for almost 10 months now at Yale Winchester Chest Clinic.I quit teaching April 2018 because of this and other medical disabilities. 3 years ago my DCLO was approx 17, now it is approx 13. Hoping the trial drug is not a placibo and stops the adverse progression. I would like to know other patients with PF ILD DLCO's and oxygen concentration level histories. Your comments will be appreciated.
Charlene Marshall
Hi there,
Thanks so much for reading my columns and for getting in touch via the comments. Interesting to learn about your experimental trial and the drug you're using. I hope it helps for you and also isn't a placebo. I don't have any experience with this drug or trial unfortunately and haven't heard of anyone else on it, but I'll keep me ears open for you in case I come across something. Wishing you well!
Charlene.
Ancel
I was working went to hospital with amonia came out IPF loss job cause use oxygen can't move a lot with out losing my breath
Charlene Marshall
Hi Ancel,
Thanks for reaching my columns and reaching out via the comments, although so sorry to hear this was your experience. It is so tough to have to give up our careers due to health issues and needs, such as supplemental oxygen, isn't it? I hope you're able to find other tasks to occupy your day and feel free to connect with us anytime. It is nice to be part of a community who truly "gets it".
Take care,
Charlene.
Steven
Charlene - when I first came back to the USA I had no idea I had IPF and immediately after settling in found a good sales job in the field. That means I was paid well for getting exercise - but I have serious knee problems, which is one of the reasons I returned and had to resign. The project manager liked me and said come back when your knees are better.
Well in the interim I found another field sales job that was a little easier and paid a little more so I thought it would go good but IPF kept me out of breath too much. I asked for an accommodation they declined and let me go. Life goes on. So I just keep moving forward and do the best I can. Thankfully the internet has provided various sales and sales management jobs I consider that a blessing. - Steve
Charlene Marshall
Hi Steven,
Thanks so much for reading my columns and for getting in touch via the comments. Sorry to hear of your agency declining your accommodations and letting you know. That would be heart-breaking, but I do like your approach to it all: life does go on, you're right! All we can do is the best we can :) I am also very thankful for the various jobs available on the internet, glad it is helping you too!
Take care,
Charlene.
Sara Everett
Charlene, please don’t be upset when your co-workers carry your bags for you. They really want to help and aren’t sure how to do so. I’m sure you’re grateful for co-workers who care about you. Thank you for all you do to help IPF patients and their families. You always give wonderfully thoughtful responses. Do you know where people can donate financially to the fight against IPF?
Charlene Marshall
Hi Sara,
Thank you so much for reading my columns and writing to me via the comments. I always love hearing from others, and oftentimes, their replies give me so much to think about as yours has. You are completely right - I shouldn't be upset about others wanting to help me, because they want to be helpful and supportive but unfortunately there just isn't a lot they can do. So many of them are incredibly thoughtful and kind; helping me is just second nature to them. For this, I am very grateful and know how lucky I am. I think my upset feelings (I never show these, always kept internal) are less about their actions, and more about my fear of losing my independence entirely one day. I appreciate your highlighting this for me and having me reflect again on the kindness of my co-workers.
Thank you also for your kind words Sara, I really appreciate them. I consider it such a privilege to connect with so many people and their families about IPF. In terms of donating financially against IPF, yes, I have some knowledge of where that can take place. How kind of you to think about this for those of us facing IPF. What are you hoping your donation goes towards - research? direct patient care? fostering patient connections (similar to our forum platform)? Once you let me know I'm happy to send you some sites/links where donations can be made :)
Hope this helps!
Charlene.
Sara Everett
Hi, Charlene,
Again thank you for all of your kind and encouraging words. I wish I had known about your column and forum sooner because I have learned so much from you and other respondents on your forum.
You probably wonder about my interest in IPF. Thank God I don’t have IPF, but my precious husband, Bo, did. We lost him to this horrible disease in August of last year. He was tentatively diagnosed with it almost one year to the day before he passed. Sadly, I feel that we were never given much information, encouragement, or support during his illness. I’ve struggled with extreme guilt that I shoud have done more for him or that I made mistakes in his care. We lived in a very rura area and didn’t have internet access then, so our ersonal research options were limited. When I’m being more rational, I know that I did everything I knew to do and I’m sure he knew that, too.
I have a modest income, but would like to do what I can to honor his memory and help others who are going through this. I’m also very interested in helping researchers find a cure for this disease. I worry that our two sons or one of our five grandchildren will develop IPF as his may have been familial. His brother passed from interstitial lung disease about a year and a half before he did. He also lost a sister to lung disease in 2012. We were never told what her diagnosis was, but she had exactly the same symptoms that my husband had. So, if you could tell me how to contact some organization and perhaps set up a small recurring donation (a bank draft), I would appreciate it. I’m praying for you and everyone on your forum.
Charlene Marshall
Hi Sara,
Thank you so much for getting back in touch with me, and explaining a little bit more about your experience with IPF. That said, I am so sorry to hear about the loss of Bo. This disease sure is cruel, isn't it? I often wish it wasn't what has connected me to such wonderful people, while at the same time, I am glad that it has because I am so inspired by the stories of others. I am so glad you're finding my columns and our forums helpful, this is why we offer them and I am always so appreciative of being able to connect over them.
Standardizing tests to diagnose IPF and the management of the disease has a ways to go unfortunately, and it saddens me that you didn't get a lot of information, encouragement or support during his illness. May I ask what was the reason for the 'tentative' diagnosis, as opposed to confirmation of it? Was Bo on either of the two anti-fibrotic drugs for IPF? I only ask our of mere curiosity, not in any form of judgement and I hope you've found ways to release the guilt you described. Sadly, the hard reality is, there isn't a lot our caregivers can do for us facing this illness and we know you all do your very best. I am sure Bo knew that too... please be gentle with yourself during this tough time.
You might be onto something about it being familial (I am no Doctor of course) but I would see if you could connect with a local Pulmonologist and ask what tests / monitoring they might be able to do to detect interstital lung diseases (ILDs) early in your family, just in case there are some genetic links. There are definitely documented cases of this! Let me know if you find any information about this, as I'll be thinking of you.
In terms of a donation, this is so very kind of you and what a special way to honor Bo's memory. Are you in the US? The Pulmonary Fibrosis Foundation is a leader in PF research and always looking for donations. My only advice is to target your donation so you know where it is going, ie. research, patient care etc. The PF forums and our columns on Pulmonary Fibrosis News are run by a site called BioNews Services whose goal is to employ the rare disease patient (like myself) so that is a good site to check out too if interested. It is completely upto you where you want to donate :) I can put you in contact with someone from BioNews if interested in that outlet, otherwise I am happy to find some contact information for you for the Pulmonary Fibrosis Foundation too!
Take good care,
Charlene.