Category Archives: employment

Priorities

Posted on by
4

As I sit here and type this, I am acutely aware of my work e-mail accounts that I should check, and the client I need to respond to, and that article I bookmarked this morning that could be useful for my book. I’ve neglected Twitter woefully the past couple of days, and I’m late getting my writing group this month’s submission.

Priorities.

I know it is universal, this daily push and pull between the tasks we need to do (and the hierarchy that exists when we need to do several things) and the things that in an ideal world, we’d able to do or want to do. We make countless small decisions each day that reflect this notion: to read the newspaper or respond to an e-mail, to eat lunch at your desk rather than taking a short break and getting out of the office, to look over work on the train rather than zoning out or reading for pleasure.

What I’ve come to appreciate lately is that line is unbelievably relative—what you would do on a normal day is of little significance when major crises happen. You do what you need to do when people in your life are sick or need help or experience loss, just as you throw normal routines and schedules to the wayside when you experience your own crises, losses, or disruptions. In the immediacy of the moment, there are things that simply matter more.

But that’s the obvious part. What’s more complicated is the gray area in between the everyday and the extreme, when there are many conflicting priorities. Don’t get me wrong, I don’t know a person out there who doesn’t (at least on occasion) find the balancing act of multiple priorities difficult to manage. I honestly can’t imagine how often parents must face these decisions, but I know that the hierarchy of priorities gets turned upside down when you have a family.

But I do think that any type of chronic illness adds a unique layer to an already complex terrain.

As a minor example, I canceled chest physiotherapy the other day because I was feeling terrible (unrelated reasons) and just couldn’t stomach the thought of a half-hour’s worth of clapping. I wanted rest and I wanted peace. Yet by the very next day I was much more congested and wheezing on both my inhale and exhale, and knew that not having chest PT made a difference. Do I regret the decision? No, because in that moment, other health concerns outweighed the needs of my usually demanding lungs.

Decisions that might make so much sense from a financial, professional, and emotional standpoint sometimes conflict with what makes the most sense from a physical standpoint. There are all these reasons to take on a new challenge, but sometimes no matter how many compelling reasons there are to do something, the difficult answer comes down to this: what is good for the body and the mind do not always correspond. Sometimes the long-terms physical consequences of decisions are not worth the short-term gratification.

Of course, the reverse holds just as true. Sometimes it is more important to take the risk, to have that experience, than it is to miss out on it. Speaking as a girl who needed multiple doctors’ letters and lot of legwork to prove I was healthy enough to travel abroad when I was accepted into an Irish university, I can vouch for that.

And sometimes it is more important to be there for someone else even if it comes at the expense of your own body or comfort, because those memories are what people carry with them. Those memories are what you carry, too.

This all makes me think about I conversation I had on Twitter about H1N1 vaccinations recently. When asked how I felt about getting one, I said that it made sense for my individual circumstances—I am in a high-risk category, and all infections hit my lungs harder to begin with. I’d rather deal with the consequences of the shot than take a gamble with a flu virus that can cause serious (sometimes lethal) secondary lung infections.

But, these are my circumstances and my health priorities and might not apply to you for your own individual reasons.

In the end, I think most of us face so many choices that force us to weigh benefits and risks. From choosing time with friends over work to choosing certain medications over others due to different side effects, very little is without calculation…and the line is always changing.

But that’s what keeps things interesting, right?

Great Expectations

Posted on by
4

I have a definite routine to my reading—every morning, it’s the Boston Globe, the NYT, and then I scan Salon and Slate, keeping track of relevant news, health/science updates, etc. (I get up early and I’m a fast reader). And like many of you, I have a blog routine, a bunch of sites I check in on regularly or follow through feeds.

One of my favorite non health-related blogs is Penelope Trunk’s Brazen Careerist, which is “advice at the intersection of work and life.” I don’t even remember how I started following it—likely it was a blog read by someone whose blog I read, because isn’t that how it always works? Her posts about Generation Y (by most measures I am technically a “Y” but sometimes I’m an “X”), and navigating a career path her thoughts on the “life” part of the work-life balance are smart, entertaining, and often funny. They make me think, even if I don’t always agree, and that’s why I like them so much.

As I sat down to write a post this morning—coffee consumed, chest PT and reading completed, full day’s worth of tasks listed and ready to be tackled, and the same overwhelmed feeling I went to sleep with currently coiling my stomach—I was blank. Sometimes I have posts I am burning to write, paragraphs form in my head during my treatments, transitions cement themselves while I am at the gym, ideas get jotted down on my laptop’s Stickie notes or in the notebook I carry with me everywhere.

When I don’t have something I am really interested in or compelled by, I won’t post for the sake of posting. I realized, though, that this overwhelmed feeling was something I wanted to write about, this mix of anxiety, apprehension, hope, optimism, fear, and excitement that is my constant companion lately. But I’m less interested in the teeth-grinding and the late-night list-making part of it, and I bet you are, too.

No, a much better way to broach this topic is to turn to this post on Brazen Careerist, “Career lessons from Susan Boyle’s Success.” Penelope makes several great points about talent, hard work, and mentors. But the part that resonated the most with me, the thing I needed, was about Seth Godin’s writing on The Dip. She summarizes his idea: “…You have to try something big, and you have to accept that anything big and huge requires you to have a dip – a point when you are wondering if it is worth it. And that’s where most people quit. For the most part, you cannot do something big without going through this process.” She drew parallels to her current start-up company, and to Susan Boyle’s choice of a really hard, really “big” song to bust out with on Britain’s Got Talent.

I think a lot of us are in various stages of the dip right now. Maybe we’re trying to reinvent ourselves after an economy-inspired career change. Maybe we’re at tough parts of a diagnostic health journey, or working through a challenging stage in a relationship.

(Or maybe, like in my house, we’re grappling with a book project and other work that is as exhilarating as it is exhausting, or we’re preparing for a huge exam with a ridiculous amount of material covered and an insanely low pass rate. You know, just as examples.)

Whatever the scenario may be, we’re all operating on the assumption that the hard work and sacrifice are worth it, that the difficult decisions we’ve agonized over in bed, in doctor’s offices,at our desks, etc are the right ones.

We all have our dips, personally and professionally. And I also think that most of the time, now matter how tired or confused we are, we know it is worth it, that anything worth having is worth the demanding journey to get to that goal.

But it sure is nice to have someone remind us now and again.

Dissecting a Diagnosis

Posted on by
4

Since my presentation on employment and young adults at DePaul a few weeks ago, I’ve been thinking a lot about diagnosis. During the Q&A, we talked about whether there was any way around the almost myopic focus on the condition and symptoms new patients often experience during and right after diagnosis.

I considered that question for several days after I answered it (in short, it is a life-altering experience so in the beginning, it seems natural to me that it would consume a lot of emotion). I’m not one to start constructing categories for groups of patients, since the universality of the chronic illness experience is something I feel strongly about, but I have always had one major distinction in mind: patients who have been sick their whole lives, and patients who were healthy adults before they were patients with chronic illness.

I think that distinction is important, and that’s why I tried to include patients from both camps in my book. Each group has its own unique challenges: people like me never have to go through that huge transition from “before” and “after” that formerly healthy people do. We do not have to grieve for what used to be, or mourn for the healthier, more dependable bodies we used to have.

(Not that we don’t have our own set of losses to deal with; we do.)

It’s a question that seems to be popping up on blogs and in discussions a lot lately: Which is better, to have known healthy and a “before” or to have never known a “before?”

All I can say is that this is my normal, so I don’t miss what I never had. Nor do I really spend too much time thinking about what it would be like to have a different experience, to envision my life minus the major medical calamities and minor comical indignities.

But lately I’ve realized there is more to it than simply healthy versus sick, or before versus after, and it relates to the process of diagnosis. True, I will never share the same shock and transition that once healthy people do when they become sick, but I can commiserate with the “before” and “after” of getting a diagnosis. An accurate one, I mean.

Sure, I’ve been sick since my first auspicious breath of air (hello collapsed lungs and pneumonia) but for the majority of my twenty-nine years, only some of what is wrong with me was diagnosed and treated correctly. I know what it’s like to have doctors assume you must not be following their directions if you are not getting better, and I know what it’s like to finally get a diagnosis that matches your experiences and symptoms, that takes all the complications and contradictions and makes sense of them. As I’ve written before, when the explanation of illness matches the experience of illness, it’s a good thing.

Last fall, I asked you about the semantics of illness, where I made distinctions between the biological aspects of disease and the patient’s subjective experience of living with illness. As I wrote in the follow-up on language and the patient experience, having PCD and bronchiectasis did not make the actual symptoms I’d lived with forever different; it just made them more understood.

Which leads me to my final point—I realize it’s been a circuitous route this time. (Honestly, my propensity to ramble is directly related to my caffeine intake, and the filter in the coffee pot has been broken all week. Less coffee=more words.)

Where does all this leave the people who live with symptoms but have not received a diagnosis? If a label doesn’t change the course of treatment, perhaps it’s not as big a deal. But what if it would change it, the way it changed mine? And more compellingly, does it change the way the external world—from doctors and nurses to employers to friends and family—responds when the patient can give a concrete name or label?

If it does, then the real question is this: why are we so intolerant of ambiguity?

Do You Have a Job? (Or, The Truth About Self-Employment)

Posted on by
11

“Are you an epidemiologist?” the man in the seat next to me asked, gesturing towards the 200-page deep stack of journal articles I’d been attempting to annotate for most of our flight.

“No, but it would sure make this easier if I were. I’m a writer,” I told him. I noticed he was reading a book about epidemics, and for the last twenty minutes of the flight, we had a great discussion about disease, drugs, and the social influences on the two.

Turns out, he works for a tiny pharmaceutical company where the handful of employees work mainly from home. We left diseases and drugs aside to discuss working from home—or, more accurately, the misconceptions about it and the hidden benefits of it. I work from home part of the time, and I was traveling to speak at a symposium about young adults with chronic illness in the workforce, so this was definitely up my alley.

I’ve been told I’ve been a bit feisty lately, and this subject definitely gets me animated. Despite how many people telecommute or are self-employed, I still feel like sometimes there’s this attitude that working from home is somehow easier, less demanding, or less real “work.” My fellow passenger has noticed the same vibe.

Um, no. It’s different, but not easier. This isn’t an illness-specific post; so many writers, editors, artists, designers, consultants, sales people, etc work from home or are self-employed, and they know it’s just as draining as the 9-5 grind, but in its own ways.

A few days a week I do not have to deal with commuting, and I realize how fortunate that makes me. But I’m also at my computer, chest PT completed and coffee consumed, and at work by 7:30 at the latest every day, so I put that commuting time to good use. While the isolation of working from home can be an issue, my airplane companion pointed out a real bonus of that isolation: he doesn’t waste time being distracted by office chatter, people popping in to ask him questions or procrastinate; he just gets his work done.

“I get more done working straight through from early morning to lunchtime than most people do in a whole workday,” he said.

I can relate. My office is my laptop, and while I break for lunch and then again at dinnertime to go to the gym, I come home and usually get back to work, sometimes not stopping till 11pm. This is not a complaint, and it’s partially just my personality to be like that so I have no one to blame for the lack of boundaries but myself. I’ve started trying to leave my laptop up in my office after 8pm so I’m not tempted to work, and the physical boundary of the staircase is helpful.

I don’t have to slog through snow and rain when I leave the office at night (well, I do during the semester, so I know it stinks), but the flipside to that is that I don’t ever “leave work at the office.” (Does anyone ever, really? Even if it’s just thinking about it?) Any writer or teacher can relate: weekends, evenings, and holidays equal copious essay reading and grading and client deadlines and research and e-mail requests. I’m being honest when I say the last time I didn’t do any type of work on a weekend or vacation was my honeymoon almost four years ago. Anyone in any kind of freelance position knows that when you’re not pitching, pitching, pitching now, you’re not getting paid later. It’s exhilarating and a good motivator, certainly, but only if your risk tolerance can take it. It’s not for everyone.

Again, this is by no means a complaint. I’ve made these choices in my life and am responsible for the outcomes and I love writing books, teaching college students, and freelancing. I love that I have the flexibility to go to the doctors when I need to and make up the work, and that I can avoid public places where I could catch things during bad months. I also know those of you who are not self-employed can say the same thing about working weekends and vacations—most people I know log incredibly long hours and they don’t have the choice to do it from their homes like I do.

Really, I’m just saying that while there are many, many positives to working from home, like setting our own schedules or wearing comfortable clothes, that doesn’t mean it’s some kind of cakewalk where we’re merely lounging in pajamas and watching television, or that our workday hours aren’t as valuable (or as stressful) as other people’s.

Can you tell that I’ve heard comments like that and that I get lots and lots of interruptions during the day because I’m “not at work?” Does anyone else have this problem? I think part of the reason I struggle with work-life balance and boundaries on my own is because I have to work so hard to combat the assumption I do not have a job because I am not in an office environment. Seriously, it’s been a few years of doing the teaching and writing thing, and I have someone who still asks me if I have a job…well, my college students don’t teach themselves and books and articles don’t write themselves, and so yes, I’d say I have a job. And I have two offices: one on campus, one in my house. Neither is more “real” than the other.

(And as an aside, the days where self-employed people who are also chronically ill actually are in their pajamas? No cakewalk either, despite how good I’ve gotten at typing while hooked up to my nebulizer.)

I’ve done both, and there are definitely things I miss about the traditional workplace: the interaction with co-workers, the stable paycheck, the benefits, the ability to take a real sick day. I know, I know, there are also many downsides to 9-5: cranky bosses, gossipy co-workers, office politics, long commutes, unwanted travel, unfulfilling projects, etc. I guess that’s my whole point: neither option is without its benefits as well as drawbacks. Let’s make sure we respect the work that is done on both sides.

My mother always said she could tell I was feeling better when I got feisty (really, a tactful word for ornery when she used it) so I guess this is a good sign.

Oh, and the presentations about employment were a blast. Once I’m up there I have a lot of fun. The icing on the cake? Having dinner with the equally fabulous Paula Kamen and Jenni Prokopy, where we ate delicious GF food and talked about one of my favorites subjects: narrative medicine.…and of the work that is writing, of course.

Young Adults, Chronic Illness, and Employment

Posted on by
12

Just a few weeks ago, I wrote a post where I confessed that the
smaller daily challenges of being employed with chronic illness were more challenging than normal this year. In Life Disrupted, I devoted several chapters to the larger, macro issues that are part of any discussion of work and chronic illness: disclosure, flexibility, health insurance, compromises, optimal career paths, etc. I also interviewed the incredibly wise Rosalind Joffe about her thoughts for younger employees who have CI.

What the past few months have shown me is that even after the supposed “hard part,” the discussions we have and decisions we make to try and balance our ambitions with our health, still there is a tenuous push and pull between the ideal and reality. It is an evolving process, and while I have worked out a fairly successful balance right now, I know my career will continue to change as my professional and health needs demand. That is what makes it both exciting and a bit scary.

I can honestly say that when I graduated from college a few years ago (okay, seven years ago, I fully admit I am getting old!) I would never have predicted I’d be doing what I am doing now, but I definitely knew I had some tough choices to make. At the time, I was still working through accurate diagnoses for my immune and lung problems and spent anywhere from 4-10 weeks a year in the hospital. I had to be realistic about what I could expect from my body, but I was also unwilling to abandon the career path I was most passionate about. I just had to figure out a more creative way to get the writing and publishing experience I needed.

Anyway, I’m thinking a lot about those early career days right now as I prepare to speak at DePaul University next week. My topic? You guessed it: career considerations for young adults leaving college. There are so many threads to this discussion, and many of these points were raised by patients I interviewed for my book:

Our careers are often a huge part of our identity, especially when we are in our twenties. Think about a typical night out—how often do people ask you what you do? What are you if you are young and not working?

Many companies and institutions are not equipped to deal with (and do not understand) the fluctuating nature of chronic illness.

Young people are often the most likely to be uninsured or underinsured, so many young people with CI must choose between benefits and deteriorating health.

We often have to make choices very early on in our careers—when our healthy peers are building a name for themselves—that put us at a disadvantage in terms of trajectory.

Of course these are just a few different points relevant to young people entering the workforce. As I gather my thoughts, I’d love to hear from any of you out there who are in the midst of these decisions, or remember what it was like to face the working world as a young adult with chronic illness. What wisdom, advice, or hindsight can you offer this next generation of employees with CI?

On Work and Chronic Illness

Posted on by
8

It’s been a tough blogging spell lately. Not for lack of topics—I have a running Stickie note of links and ideas on my desktop—but more a lack of focus or creativity. Sometimes being pulled in many different directions and having many different things to talk about can have the exact opposite effect of what I’d like as a writer.

In fact, I’ve started and stopped at least three different posts since Tuesday. And then a link to this article in February’s More magazine appeared in my inbox, and suddenly I knew what I needed to write about.

The article is called “Ill in Day’s Work” and, as you might expect, it explores the challenges of chronic illness in the workplace. (It’s written by Donna Jackson Nakazawa, author of the excellent book The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance–and the Cutting-Edge Science that Promises Hope).

The article itself is informative and encouraging, and covers many of the “macro” issues of employment and chronic illness—disclosure, financial compromises, discrimination, etc. Many of these issues are ones I discussed with my colleague Rosalind Joffe for Life Disrupted, and though this article focuses on women a bit older, the universals resonate compellingly.

But those big-picture items are not what I want to discuss today. I’ve done a lot of compromising and negotiating and finagling already, and for now I think I’ve patched together a career path that works for my skill set, my long-term goals, and my health.

However.

It’s the everyday, smaller stuff that resonates with me these days. For some context, I’ve been really quite sick since before Christmas, with the exception of a few days in the middle of January. Sicker than usual, sicker than I have the patience or tolerance for, sick enough that I was on nebs hourly for awhile. (I haven’t written about it because there really isn’t a point; this is winter for me and there’s not much interesting to say about it.)

This winter’s malaise has made staying engaged in my work difficult. The issue of physically being able to get to work is one thing. Luckily some of this happened over winter break; luckily no one minded when I had to cancel class(which I never do); luckily my students are patient with my weeks-long constant coughing and my lack of voice; luckily I work from home a couple of days a week; luckily my husband meets me to help me get home when I cannot make it back on my own.

Because I am finally starting to feel better, I can see the toll this semester has taken. I have not seen my friends in almost two months. I’ve missed all holidays and most family events.

More than that, it’s like I’ve been working in a tunnel, where I am so focused on getting through the day and making it home that I don’t have the mental or physical energy to be as productive as I’d like. I worry I’m not as “on” as I’d like to be in class, I worry I’m not as clear-headed when I get home and try to finish articles on deadline or finish research for a big project. The article mentions lost networking opportunities after work as a result of chronic illness, and I found myself nodding. Lately I haven’t even wanted to talk on the phone at night, never mind make it to functions.

However. (Again.)

I’m beginning to emerge from the hibernation, and so I’m beginning to see beyond the tunnel vision of merely getting through the day. This mish-mash of several different jobs, seven-day work weeks, and unconventional hours has been carefully thought out and planned with the future in mind, and while some winter days are darker than others, most of the time it works for me.

Staying Employed When You’re Chronically Ill: Interview with Rosalind Joffe

Posted on by
6

It is my pleasure to host today’s stop on the virtual book tour for Women, Work, and Autoimmune Disease: Keep Working, Girlfriend!. I first got to know co-author Rosalind Joffe when I interviewed her for my own book, and I am excited to be a part of this tour—this book is incredibly informative and should be a go-to resource for anyone trying to navigate staying employed in the face of chronic illness. My interview with Rosalind follows:

1. I know you must get this question a lot, but it’s an important one—why did you ultimately decide to write this book?
RJ: I’d seen in my own life and from my client’s experiences that there is a fair amount of pressure for women with chronic illness, particularly married mothers, to stop working. Since I had found that continuing to work as much as possible when possible was essential to my own health, I wanted to encourage those who view this as I do by arguing against some of the prevalent myths.

2. Why the focus on autoimmune disorders in particular?
RJ: Primarily, it helped us narrow our focus. All of the issues we discuss in the book are relevant to any chronic disease or condition but it was too difficult to try to leave it that broad. It was easier to narrow it to since autoimmune diseases affect women 4 times as often as men and, usually between ages 25 -40 (prime childbearing and career building ages). It’s this confluence of factors that make the situation so problematic for women. Finally, both Joan (my co-author) and I live with auto immune diseases which made it easier to speak from and incorporate our own experiences.

3. What are some of the biggest fears or misconceptions women have about the workplace and chronic illness?
RJ: I think that women and men worry that they’ll be marginalized if others know that they have an illness. The reality is that it can happen regardless of how savvy you are. Women also worry that they cannot live with active chronic illness, have a demanding career and raise a family. Here, too, the reality is that it is very difficult and requires a lot of planning and taking a long view of situation, thinking strategically. Finally, many young women don’t think enough about what it takes to balance family and career when they’re choosing a career and that becomes even more difficult when illness adds into the mix. I suggest thinking carefully about your career options when you get a diagnosis and don’t leave it up to chance. I wish I had been smarter about this early in my career.

4. You write about developing a “warrior spirit.” Can you discuss what that means, and why it is so relevant to the issues of employment and living with chronic illness?
RJ: Actually, I worried about that phrase because I didn’t want the term to be interpreted that women should be more like men. It’s a term I use with my clients because I think that chronic illness can leave you feeling as if life is out of your control and can encourage passivity, particularly when you spend so much time seeing doctors and healthcare providers! I’m not suggesting that you become more combative. Rather, I am suggesting that you think for yourself, you seek options even in the face of opposition and continue to build your ability to be resilient.

5. A lot of my readers are younger adults who are just entering the workforce and trying to carve out a career path with the added burden of chronic illness. What advice would you give to the youngest members of the workplace in terms of things they should consider/look for in a career or workplace environment?
RJ:That’s a great question. First, think long and hard about what you love to do, even if you think it’s not your greatest strength, because that interest and passion will keep you going for the long haul. Consider other aspects of this career and how it fits your values and interests in life. When you think about a career choice that requires additional education or training, try to work in that field in some capacity so you can see what it’s like up close and personal before diving in. Choose a career that allows for as much flexibility as possible so if one job turns out to be a poor fit, there are other places where you can apply your skills. Most importantly, you will always be able to find work if you are good at what you do and bring value, so make it your mission to be the best you can be. You might not be able to work at the pace you would most like all the time or make the salary you dream of, but if you plan strategically, you will be able to continue to do something that has value and feels meaningful.

6. Lastly, you’re a patient yourself, and through the years you’ve faced many of the challenges and setbacks as your readers. What has been your biggest challenge in terms of staying employed? Would you say you’ve reached an ideal balance now?
RJ: That’s tough because there were so many challenges to staying employed. I didn’t think about my career in the long term early enough and I was always trying to make a job fit to my needs. My health waxed and waned (I developed several autoimmune diseases over the past 30 years) so it became increasingly difficult to plan. If I’d had a crystal ball 12 years ago when I had an ileostomy (curing the ulcerative colitis) and then went on MS medication (that slowed down the MS progression dramatically), I probably would have taken a path that would have left me more financially secure. But I’ve been lucky to find work that I really love doing and that I can do. No doubt about it, working for myself at home has made it much easier to keep working and I hope to keep doing this for a very long time.

Thanks so much, Rosalind, for writing this book and answering my questions!

***
Just a quick reminder, while we’re on the topic of reading, that another great (and entertaining) edition of Grand Rounds is up at Musings of a Distractible Mind. Check it out!