Invisible Illness Week

This week is National Invisible Illness Awareness Week.

Normally, I write lengthier posts to discuss living with invisible illness, but this year I did something more interactive. Check out my virtual conference on Pregnancy, Parenting, and Chronic Illness, which is now archived so you can watch it anytime.

Definitely check out the other speakers, too, who covered topics ranging from employment, relationships, communication, and other issues related to balancing life with invisible illness. It's great to see some familiar faces and colleagues in the mix, and get to know other speakers and advocates, too.

Many thanks to Lisa Copen for her tireless advocacy for people with invisible and chronic illness.

Have a great week!

On Working From Home

So in my recent post on working with chronic illness, I mentioned a forthcoming piece on working from home.

Now, before I launch into my experiences with and take on working from home, I should point out some illness-specific benefits: There is more flexibility to schedule doctor appointments, tests, and daily chest physiotherapy. On “bad” days I can still work, even if means moving my home office to the couch and typing over the nebulizer mask. On days when other conditions flare and I can’t move my legs well (for example) I don’t have to worry about how I will get from point A to point B. Less commuting on public transportation and less time in crowded places during the peak cold/flu season means less opportunity for me to catch things that leave much sicker for longer than the average person.

And of course, when I am in the hospital, my laptop and wireless access mean I can keep on working.

I must admit that there are a lot of positives in working from home when trying to manage a career and chronic illness. It doesn’t mean working less—in fact, one of the biggest challenges is that there is little separation from work life and regular life—it just means it is a little easier to work better when my body gets in my way.

I’ve worked from home in some way or another for nine years now, whether it’s a couple days a week during the semester or full-time doing freelance work and writing books. This Boston Globe piece on working from home did point out some relevant challenges and opportunities of working home. I particularly enjoyed the response to the claim that it is easy to take care of children and get work done—sure, bring your child to your office sometime and see how much work you get done!

Anyway, I think the key to working from home successfully is knowing your strengths and weaknesses and finding a routine that works for you. It’s not for everyone. It can be lonely and isolating. It can be really hard to focus and self-motivate. It can completely usurp your home/family balance. Some people get strength from social interaction and do best when they draw from the energy of a group. Some people need regular check-ins and accountability for best results. The point is, know the conditions that allow you to succeed.

For me, it doesn’t matter how sick I feel or how late I was up working or with the baby; I sit down at my desk in my home office every morning, coffee in hand, and go through my inbox/headlines/social media check-in. I break for a brief lunch. I don’t make or take personal calls during my designated work hours: those hours are scarce and precious to me, and I try to make the most of them. Sometimes I need a change of scenery and go to a coffee shop; other times I know I just need to plow through it without any distractions or stepping away from my computer. I make to-do lists every night before I go to bed.

Oh, and before my daughter was even born I knew I wasn’t going to try a full-time course load with a full-time writing career, a large part of which happens from my home office, without some child care. As I mentioned before, even if it means working many hours late at night and very early, my time with her is about her, and when I am working, I just want to focus so I can get it done more efficiently and therefore, have more quality time with my family.

Boundaries are also fundamental. I think many of us, whether we work from home or not, struggle with knowing when to “shut off” work, and this is especially true when our office is in our home and our deadlines are often self-imposed. It’s no secret that balance is hard for me, and I do think working from home exacerbates that.

But creating our own boundaries is just one part of it. The other part is reinforcing those boundaries with the people in our lives. The expectation we can chat whenever, we can make plans any time of day, etc simply because we are working from home can get frustrating, and if I don’t hold up those boundaries (nicely) I can’t expect others to respect them, either.

Sometimes I feel there is an inherent value judgment that other people’s time is more valuable than mine if they happen to work in a traditional office setting and I am at home, that my time is more expendable.

And in a way, it is—that’s both the challenge of it. If I need to or want to, I can step away more easily. I can take my daughter to music class, or go to another doctor’s appointment, etc and make up the time later in the day or the week (or weekend). I don’t work from home a large part of the time for this—it just so happens that writing, editing, being a professor, and consulting lend themselves to a non-traditional work situation—but it is a major positive that is more important than ever now that I have a child. Yet if I am not vigilant and disciplined, flexibility could become a detriment.

Lastly, working from home leaves me in a weird place when it comes to play dates, making friends with other mothers, etc. I am not away at an office every day of the week (during the semester, 2-3), but I am not at SAHM, either. I don’t make plans for evenings often, even on weekends, because I am usually trying to keep my head above water, work-wise.

These are not complaints, merely observations. I’ve made decisions to bring me to this point, ones I hope set me up for the most success in terms of my health, my careers, and my ability to be the mother I want to be. Like everything, there are compromises but for me and in my personal set of circumstances, the compromises are worth it.

Anyone with tips or observations to share? If you’ve made the switch to working from home, are you glad you did? Did you do it for your health?

On Working, Parenting, and Chronic Illness (Part 1)

This week, my spring semester ends.

And while in many ways it was a great semester (engaged, intellectually curious students, new assignments and experiments in the classroom that worked out well), I am profoundly relieved it is over.

I’ve been wanting to write a series of posts about work, parenting, and chronic illness for awhile now; a recent Boston Globe column on working from home only intensified this.

I knew back in December that finding balance would be my main challenge and while I might be self-aware enough to anticipate this, I wasn’t self-aware enough to actually do something about it in time.

During the academic year, I teach a full-time course load, plus other administrative and professional development projects and meetings. I’m also a writer with an impending deadline for an incredibly research-intensive beast of a book. Both are full-time responsibilities.

Like anything, there are compromises and trade-offs to this type of career path, one that is not a traditional office job. I work from home a couple days a week during the year, and work from home full time during summer months. I’ll discuss the pros and cons of working from home in an upcoming post, but the number one benefit of my current career is that it means more time with my daughter than I could ever have in an office job.

(Plus, the health insurance I provide for my family is awesome. Really and truly.)

After all, after working for almost five years and risking my life to have her, I don’t want to miss a thing. This was the promise I made to her and to myself when I went back to work: when I am with her, she gets all of me. No laptop, no hastily typed work e-mails, no frantic checking of the inbox for replies from editors or interviewees or students. I don’t want to be half-present with her and half-present with the other people in my life who need me.

She deserves more than that—and so do my students, and so does my book and all the people who have given me their time and insights during the writing/research process.

Some days (the best days), I am mainly with her. Other days, like when I am on campus, I make sure the mornings and the later afternoons and early evenings are all about her. Luckily, we have had family who have been able to help with watching her some of the time, and a wonderful caregiver some of the time, and the more flexible nature of my work demands means that most of the time, I spend a lot of time with her and make up what I need to do for work at other times in the day. I know we’re fortunate to have help, and I know not everyone does.

In terms of being with her and watching her grow from a precocious 4-month-old just starting to sit on her own to a chatty, giggly little girl who feeds herself and loves turning the pages of her books, in terms of being an active, engaged participant in her everyday life and routines, I have no regrets. I never felt my work took away from her, or took me too far away from her. In this way, my semester was a success.

But, a full-time workload plus a book plus daily chest PT (and all of the logistics of her health needs and doctor appointments) and everything else means that making up what I need to do was pretty challenging. For a lot of the semester, it meant staying up very, very late and getting up hours before my daughter woke up to get stuff done. It meant working almost every single Friday and Saturday night and during weekend mornings and naptimes. And all of that is clearly worth it, because it means I get to pick her up from her crib when she is all smiley and up from her nap, or take her to all her doctor appointments, or watch her devour her sweet potatoes or gluten-free snacks.

However, a schedule like that is not sustainable, not for healthy people and certainly not for people with chronic illness. (Oh, hey, and it goes against practically everything I’ve written about here and in my book, too.) It’s almost May, and the infection I caught at Christmas is still recycling itself through my lungs and upper respiratory tract and causing problems. By February, I started noticing my lung capacity was limited enough that I had a hard time walking through campus and talking at the same time. By March, my adrenals started acting up and some days, my arms and legs were so heavy and concrete-laden I needed a ride to and from work because I couldn’t get myself from my parking garage to my building on the other side of campus.

I realized a bit late in the game that all of this hard work would be for naught if it meant I was too sick to be what my daughter needs from me. Duh, right? My health affects her. What good are the carefully preserved hours with her if I can’t lift her, or take her places, or play games with her?

I’d like to say I had this huge revelation and made all sorts of drastic changes, but responsibilities are what they are. I did need to prioritize even further, though, and that meant letting go of some expectations of how much research and writing I could do during the semester. I don’t get up well before dawn anymore. I try not to schedule activities on both weekend days. I tell myself regularly (no really, I do—I find I have to repeat it to myself) “all you can do is what you can do” and what I can’t get done I leave behind me when I go to bed at night.

My husband, a fantastic father and a wonderful support system, now has a little more flexibility with his time since starting his own business, and that’s made a huge difference. (Even though he’s pulling very long hours himself, it’s amazing how much more time he has to see her now that he doesn’t have an hour-plus commute on the T every day and can walk to his nearby office.)

In the end, I made it. I made certain decisions that upheld certain priorities and I made it through. We made it. Since I don’t plan on ever having a baby and an enormous book due at the same time again, I do think life will be more manageable from here on in. This semester, my body paid some of the price but that means my daughter and my students did not. The beauty of teaching is that next semester, I can try it all over again and hope to do much better at this whole balance thing.

(And between now and then, I’ll finish that book. There’s nothing as clarifying as a deadline…right?)

I know so many of you out there have done this whole working-parenting-being sick juggling act much longer than I have. Any words of wisdom (or, moments of defeat) to share?

An Exciting New Venture (Or, A Better Life…)

In five years of marriage, we’ve acquired two rescue dogs, two different homes, two graduate degrees, four new jobs, two book deals, and after a long (long) journey filled with more challenges and compromises than we ever imagined, we are parents to a fiercely loved little girl.

And now it’s time to announce the next big venture. I am incredibly proud and excited to tell you that as of today, my husband’s new company, The Well Fed Dog, is up and running. If you’ve read the posts about gluten-free cooking on this blog, you know we are both passionate about eating whole, healthy, fresh foods. With experience as a line cook and restaurant manager before he went into banking, John is the one who executes our culinary adventures, and he is happiest when in the kitchen.

If you know us in real life, you know we’re both insanely passionate about our two rescue dogs, and dogs in general, and making sure they are as healthy and happy as possible. (And yes, one of our dogs has a major food allergy, so we know how important knowing what’s in your dog’s food and knowing where those ingredients came from really is.)

Now, John has combined these two passions into The Well Fed Dog, which delivers fresh, all natural, grain-free dog food. All ingredients are human-grade and hand-selected, and all recipes are carefully formulated to meet dogs’ special nutritional needs. The Well Fed Dog also offers locally made treats and eco-friendly chew toys, as well as a totally customizable membership plan and benefits. You can find out so much more about the mission, philosophy, and product offerings by checking out The Well Fed Dog’s brand-new Web site.

This has been a long time in the making, and comes from the heart. It is a big change for him and for our family, and having him doing something we both believe in so much is an amazing opportunity.

So many of you have watched big events unfold in our lives through this blog, and have been such a source of support and encouragement, and I am happy to be able to share this news with you. Whether you’re a dog lover or someone who knows dog lovers, there are lots of way we’d love for you to be involved and spread the word:


• Link to the Web site if you have your own site or blog
• Click this link to "Like us" on Facebook
• Click this link to "Follow us" on Twitter

Audience

In my writing classes, audience is the fundamental principle we keep returning to for each assignment: Are my health sciences students writing to peers in the professional realm? To a scholarly, academic audience? To the general public, or a patient (ie, lay person) audience? Such audience analysis gives way to decisions about scope of content, vocabulary and diction, and overall tone and approach.

You need to know your audience for your message to be successful,” I hear myself saying over and over.

And yet lately, when it comes to my own writing, I seem to be so hyper-aware of audience and more specifically purpose, that it leaves me wordless. (I know!)

I’ve mentioned having trouble with balance since going back to work full time with a baby, and have also said I’m trying to get back into a groove. And while part of that does mean simply carving out the time to post with regularity, to comment on the posts I read (because I still read them—it’s something I can do one-handed while nursing), and to engage more fully in this online world, that is only part of it.

I need to find my content groove again, too. So often I have concrete ideas, ideas that won’t go away and keep percolating away until they threaten to bubble over, but then I stop short of executing them.

I want to write about aspects of parenting that are enlightening and humbling, like breastfeeding.

(But this isn’t a parenting blog, so stick with issues of parenting and chronic illness, like knowing when to fire a pediatrician, says the little voice.

I want to write about being a parent after infertility, since I never expected just how much that journey would inform my worldview and my thoughts on this joyful little girl I get to wake up to every day.

(But think about the people reading this who might still be going through the infertility nightmare, cautions the little voice.

And I do want to write about finding balance, and feeling like I am falling down the rabbit hole of work again, except that while there is a lot of pressure right now with work-related stuff, there is so, so much happiness and fulfillment and joy with my daughter that I am worried I will not strike the appropriate balance, one that shows how much my heart and mind have stretched and changed and re-prioritized in the midst of the same old problem.

(But can do you that in a way that is accessible?, queries the little voice.

And as cognizant as I am of what I set out for this blog to be a few years ago, and trying to stay true to that, I am even more aware of how much of what is really at the core of where I am right now is not necessarily my story to tell.

(Just because you’re a writer doesn’t make all your material fair game, chides the little voice, a point that speaks to me more strongly than ever.

I feel myself pulling inward. I do think there are ways to discuss parenting and still relate it to chronic illness, and I want what I write to reflect the huge shift in my life, but I also want to protect my daughter’s privacy and not put too much out there about her. You won’t see her name here, or details about her health, but perhaps there is more room for a little window into our lives with her.

There have been so many changes in the lives of people close to me over the past several months, and the repercussions of those changes affect me every day. But other people’s illnesses are not my illnesses, and though we are all connected, I am drawn by the urge to protect the vulnerability I see.

And here we are. The days are getting longer. The snow banks are melting a little bit. I survived the bulk of winter without getting too sick or going to the hospital. There is a happy baby chattering away in her crib right now, thrilled to be awake and content to tell secrets to herself for a few minutes. And, I have stories to tell. I just need to get out of my own way.

(You’ll get there.)

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.

Looking Back, Looking Forward: 2010

There are so many good year-in-review and decade-in-review memes out there already so while I won’t be joining in on them, I can’t let 2009 slip by without some commentary on it.

In my little corner of the universe, 2009 definitely had its high points: I signed a deal for my second book during a very tough economic spell, I met Bill Clinton and chatted about health care reform, and I pursued new academic and freelance opportunities. I am incredibly grateful for all of these experiences.

I thought and wrote a lot about hope this year, a word that is as closely related to these high notes in my life as it is to the low ones. In fact, I’d argue that when I felt fragmented and run down or when I was disappointed, when all I could do was focus on just making it work, hope was even more important.

I’m not into making resolutions this year. I’d rather take what I’ve learned from 2009 and apply it to 2010. Despite some really great developments, 2009 was a long, tough year, a year that pitted my strengths against my weaknesses in a major way. I am a planner and a control freak, and the more crazy life (and health) gets, my tendency is to push back even harder. I had a ton of pressure on me this year, and so much of what I needed to do hinged on me being able to control the one thing I can never fully control: my health.

In a much broader way, I think 2009 was a year that challenged so many of us on that front, healthy or otherwise: sometimes we can do our very best but other factors can dictate so much of our success or failure.

It is one thing to say that having hope is important, but it is another to be truly willing to accept things that are out of your control, to have hope things will work out even if in the moment, you can’t see how or when. That is the hard part for me, anyway.

When I think about the past year and the past decade, I have to admit that some of the most important and life-changing developments were ones I never planned for, never even knew to look for: meeting my husband (six years ago tonight, actually); getting my MFA, meeting the friends in college, graduate school, and beyond who mean so much and who feel like family; starting this blog; etc.

There are many more examples like this, but the point is, sometimes you just have to be open to chance and possibility. All the planning in the world does not guarantee we will get what it is we think we want, and sometimes we don’t know what we want or need until we find it. At points this year I think I was so bogged down in surviving that I lost sight of the importance of the unexpected, that sometimes hope means trusting in what we cannot yet envision.

In this post, I reflected on the idea that a person needs three things: someone to love, something to do, and something to hope for. This is what I want to carry with me into 2010, and into the next decade.

Have a wonderful (and safe) New Year’s, and may 2010 bring you as much health and peace as possible.

Thank you for reading.

When Silence Speaks Volumes

I read this NYT piece, Are We Going to Let John Die? the other night and am only now just getting around to linking to it. It got me riled up, and like a successful Op-Ed piece should regardless of where we stand, it made me think about the issues involved.

From a research standpoint, health care reform remains on my mind these days. Right now, I’m looking at the civil rights movement, the early AIDS movement, and the disability movement and their influence on chronic illness. In terms of catalysts and goals for the chronic illness community, certainly health care reform is a significant issue. (Stay tuned, as I have a lot more to say about all of that…)

But when I move away from the books, journal articles, and interviews and look at daily life, and the recent content of this blog, I can see I’ve moved away from policy and reform a bit. This past spring and summer, it was hard not write about—from watching webinars that explored private versus public insurance to digesting the health care conversation with Bill Clinton to discussing the particular needs of patients with existing chronic illness, the subject was always fresh in my thoughts.

But lately, not so much. It’s still in the headlines, and I still read the articles. It’s still the topic of morning radio shows, and I still listen to NPR. Yet despite my cognizance of it, and its obvious importance to me as a patient, it hasn’t crept into my own titles and hasn’t been featured in my own writing.

The difference? Honestly, I think a lot of it has to do with the fact that this summer was relatively calm in terms of my health. I could manage the juggling act and stay on top of things with enough mental energy to engage in the dynamic conversation. Since September, I’ve spent 6-7 weeks acutely ill. Now, I am used to this cycle. If you’ve read this blog with any regularity, you’re probably used to it, too. It’s just the way things are when you’re blessed with dodgy lungs and a pathetic immune system and other medical complications right now.

On the positive side, I can say the infections haven’t been as bad or lingered quite as long as they normally would because of the very proactive, very aggressive preventive protocol I have been following since last March.

I’m a walking risk/benefits analysis, really.

While the cycle is all too familiar, what distinguishes it right now is that my workload has never been more intense. When infections sap my energy and consume my already scant hours of sleep, it hits me even harder. Or, to be more blunt, when I am sick it takes every ounce of energy and focus I have to just make it work, to get through the day and accomplish the tasks I need to in order to stay on track.

When I am sick, I fall off Twitter. I become a comments slacker on other blogs, my response time to e-mails takes a notable dive, and I beg off pretty much every commitment. I enter the Black Hole where the only things I can focus on are trying to get air and not falling behind in work. I read articles without comment, I skim headlines without linking.

In short, at times I am too busy being sick to contribute in any meaningful way to the conversation of the very health care reform that could define my patient experience.

Ironic? No, it’s inevitable. It’s life with chronic illness.

I get sucked into the Black Hole of silence even with a ton of local family and friend support, with an amazing husband, a relatively flexible career, a world-class hospital 10 minutes away, a healthy stubborn streak, and twenty-nine years of experience living with illness. Oh, and with very good health insurance.

Scary, when you consider the millions who cannot say the same.

(Also inevitable, rather than ironic: what keeping that wonderful health insurance has cost me so dearly in so many other ways, and how precarious it feels nonetheless.)

I guess I can tell I’m starting to improve. The ability to be riled up is always an encouraging sign.

Priorities

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

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

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)

“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

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

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

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!