Sunday, April 04, 2010

Down the Rabbit Hole: When Chronic Illness and Work Conflict

“Can I write you a note? Would that help?” my nurse practitioner asked delicately. She went on to add (just as delicately) that I really needed a few days off to recover from my recent hospitalization.

Part of me wanted so desperately to accept her offer, to tell her a note would help and that I could take a few days. I wanted to give in, to crawl into bed and not get out.

But, it was the busiest and most intense period of the semester, busy enough that I found myself commenting on drafts at 4am in the hospital, grateful I did not have a roommate so I could keep the lights on. I was too uncomfortable to sleep, and I’d hit that early-morning window where Law and Order reruns abated for a few hours.

The numerous side projects I was committed to—both on campus and in my writing life—were all ramping up, and everywhere I turned it was apparent to me that too many people would be affected by my absence if I checked out of life for a few days. It’s one thing for me to be sick and fall behind, but it’s not acceptable to me for others to get behind because I am sick. Thanks to wifi, my laptop, and the impossibility of sleeping in a hospital I’d managed to keep up the charade of business as usual while I was an inpatient, but it was exhausting.

The night I was discharged from the hospital I stayed up past 3am trying to catch up on work, and woke up early the next day for chest PT and another 18 hours of work and catch-up. That set the tone for the next week and a half. By the time I had my discharge follow-up appointment, I’d managed no more than four hours of sleep per night: coughing, wheezing, and fighting for air made it hard to sleep; steroids and stacked nebulizer treatments that make me jittery and wide awake made it even more difficult.

Things were not going well. In the ongoing quest for balance and the negotiation of priorities when it comes to employment and illness, I was floundering. Free-falling, actually.

Since this fall I’ve repeated the mantra of “just make it work.” Find a way to get it done, don’t complain, use every second of time efficiently. When you’re sick, you don’t have the luxury of not working when you don’t feel well, or you’d rarely ever work. People do things even when they don’t feel up to it, that’s part of life. Whatever else happens, just make it work. Get results, don’t make excuses.

And for months, that mantra served me well. I’ve made choices that translate into a consistent 7-day work-week; aside from Thanksgiving Day and two days at Christmas, the last time I had a true day off, including weekends, was sometime last summer. I had (and have) my reasons for these decisions, and do not regret them. I went into this with my eyes wide open and cannot complain about a situation I created. The trade-offs—a big step in academic career development; a second book deal; expansion of my freelance consulting business—are worth the sacrifice.

But all bets are off when my “normal” level of illnesses becomes really acute. Part of it is physical-the exhaustion of infections that last for months, the toll fighting for air takes, the impact of weeks and weeks of poor sleep, hospitalizations, etc.

However, more it is mental and emotional, and is a result of a lifetime of pushing. It’s always jarring for me to go from the hospital right back into “real life” without a chance to stop and process. Since the work always follows me into the hospital (when I was getting stabilized in the ER this last time, my main concern was how to handle my in-person class the next day), it always feels like one big blur.

In a throwback to my old patterns, the longer this recent exacerbation dragged on, the more determined I was to make sure being sick did not impact my ability to do my jobs. When I first got home I turned around 40 rough drafts with substantive comments in two days. I attended meetings and jumped into debates and responded to clients. I’m pretty sure no one knew that days before I’d been hooked up to oxygen or that walking and talking at the same time was not yet possible.

Interestingly, though, the more I built up the façade, the more a little bit of me wished it wasn’t quite so convincing, that I had some sort of buffer. I felt like my grip on things was dangerously tenuous; one tiny slip or extra deadline or new symptom and everything would come crashing down.

For someone so wired to be in control and so focused on not slipping on any of these details, I felt (correction: I still feel) very out of control.

I know something has to give. Even though things are getting a little better by now, I will not fully recover if I keep up this pace. When I found myself negotiating my way out of a second admission last week from the Starbucks at work, armed with a briefcase and a hospital bag (doesn’t everyone bring one of those to work?), I realized I’d reached a tipping point. This is not sustainable. In fact, it’s sort of crazy.

I am not balancing things at all and I know it but I am torn by conflicting responsibilities-to my students, clients, colleagues and myself. I am torn my stubborn pride about never giving in and pragmatism that says if I keep this up I won’t be of much use.

So I have some decisions to make. I have to prioritize my life so I make it through the rest of the semester as effective as I normally am.

And just one good night sleep? That would go a long way, I think.


Anonymous said...

I don't know how you do it, and it seems you do it well. I applaud your drive...and I wish you could get a good nights sleep.

Lissa said...

I strongly felt that I just needed to show the world and myself, that I could do anything I wanted in spite of living half my life with chronic pain and generally poor health. I used to do it all, but I jumped at the chance to stay home with my daughter two years ago. As soon as I was able to live life according to my body's clock and not force it to obey the confines of a work day (even if I did not sleep well, or was dealing with a spell of exhaustion or intolerable pain) I gained control over my chronic illnesses that I never thought possible.

I still manage to work from home- I don't feel like I have given in, or lost yet another facet of my life or abilities to this pain and illness. I just feel (almost) healthy, in control of my future, and generally amazing.

Melanie said...

This situation is similar to mine as a student. I have been having an exacerbation of my chronic illness and have been struggling to keep school and work together. I take six classes and work 17.5 hours a week. My doctor put me on "bed rest" for a coupe of days but I had a really hard time with that. I need to go to class, go to work, go to the library, study for this exam, write a paper, etc. I will just not let my body take the time it needs to heal.

It's a balancing act that I hope to someday have figured out.

Sara said...


I read this post with keen interest. Although my work is not as intense as yours, nor my illness, trying to live with integrity as a working person with a chronic illness is a daily balancing act. I would suggest you read "The Alchemy of Illness" by Kat Duff. It has helped me tremendously. I would suggest that you may be able to winnow your commitments and yet deepen your experience. All best wishes,


Anonymous said...

It seems like that program is not sustainable for a healthy person, much less for someone like us!!!! Good luck finding the right balance for you.

Jessie said...

I love all your postings but this one gave me the boost to actually leave you a comment. I admire your determination and the special talent you have to successfully articulate the feelings and difficulties that we, patients with chronic illnesses, confront. I applaud your book and have always thought about every word in it when I find myself wondering about the way my life is going. I love the idea of a second book and as an English major, I would give so much to be a student in one of your courses. However, reading this post made me think of the amount of stress that we sometimes put ourselves under. The desire to show that we can do it all just as well, if not better, than someone healthy/normal is toxic. Unfortunately, I, too, do it all the time and you’re right. It’s scary to see how well I can make my illness an invisible one for the sake of my coworkers, fellow students, professors, and friends; looking like I’m totally okay with the load and in fact, many times even agreeing to more. Yup, it’s crazy on my part. But, like you said, “something has to give”. While you figure out what that “something” is, know that we (I’m sure everyone else agrees) need you, at least, at your “normal level of illness”. Like my mom tells me when I’m doing too much and resting too little, “I need you alive dear. You are of more use to me that way.” :)

Success always,

Laurie said...

Thank you everyone for your feedback and your supportive words.

Love2Much, happy you left a comment for the first time!

Usually I am better at letting things not spiral this way. I work from home two days a week, I do much of my stuff online, I have enough flexibility to get to my dr appts, etc. But lately there is no balance...

I have some thoughts on why that is (and what I am doing about it) so stay tuned!

Unknown said...

An incredible juggling act you've got going. When I was in the hospital not knowing how long I'd be there, I had my husband bring my portable office. I had started a company 3 months before, and I wasn't going to loose it over sickness. I'm fortunate that I don't see clients on a continual basis; I call my own schedule, even if it means working propped up in bed. Keep writing. I really get a lot of strength from you posts.

Medical Mojave said...

I do this too. I work until I can't. I don't dare take time off because I don't know at what point I won't be able to work.

It's hard.

You do sound like you need more of a buffer though. If you can find it.


Dominique said...

Wow! You're post actually made me feel worn out and exhausted! Geesh I don't know how you are doing that.

I did it when I got my bachelor and now 3 years later I am still paying a very high price for it. I don't regret it, but I think I would have gone about it a little differently now after the fact.

Please, please take time to take care of yourself. No one else can do that but you and you will be no good to anyone else if you collapse.

Your spirit and determination is amazing! Hang in there!

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