The Limping Librarian: A Post on Chronic Illness in the Workplace

While I'm sure this isn't a topic Andy meant when he wrote his recent blog post about wanting to see more librarian writing on issues of import, reading his blog did kick me in the pants a bit, because I've been sitting on a handful of drafts that I couldn't bring myself to hit "Publish" on. I hesitate for various reasons - some of the posts are too close to home, and it's hard to tell what's appropriate to discuss and what's not. For some, I need some time to let things settle so I don't publish something in the heat of the moment. Other times, folks like Iris Jastram have simply done the topic justice and there's no need for me to serve my readers leftovers.

Sometimes I hesitate because I wonder if it's something that's more personal than librarianship-oriented, or because I know it throws a wrench into any future job hunts. This is one of those, and it goes into being a professional with a chronic illness.

I've spent the better part of the time since Fall 2011 trying to deal with a chronic illness/disability. An unpretty combination of rheumatoid arthritis and ankylosing spondylitis means that my joints are generally painful, sensitive, and stiff. Approaching weather fronts, rain, exposure to cold, and impact (walking, running, jumping) result in severe pain and inflammation, my spine is attempting to fuse, and bending awkwardly without thinking or sleeping in an odd position results in dislocated ribs or a dislocated hip more often than not. My teeth crack easily, and tension from the joint pain leads to muscle tension and spasms in my back and neck. The medications that allow me to walk and function again are immunosuppressants, so I am more susceptible to sickness, and I don't recover as fast. Medication and physical therapies are palliative - meaning they can help alleviate symptoms, but there's no cure.

Part of the difficulty with being chronically ill has been that the symptoms are intermittent - while the disease is always there, I have both good days and bad days. On my good days, I walk without a cane and am downright sprightly; I can lift my arms above my head, showering and washing my hair does not completely exhaust me, and I can stay awake and engaged with my husband and our furkids past 7:30pm. Sometimes I even put on makeup. Bad days range from walking with a limp, using a cane, and being in bed by 7, to days where the joint pain in my knees, hip, SI joint, hands, shoulder and neck is so severe that I have to give in, take a painkiller, and try to sleep off the worst of it until I can function. The stress those bad days put on my body makes my blood pressure shoot up to a concerning degree, and aggravates a lifelong case of IBS. I am thankful for my recently chopped-short hair, not only because I find it funky, but because it requires far less arm-above-the-head time. I rid myself of my beloved high heel collection, and do not wear anything higher than a 1 1/1" heel (and that high only if it's a wedge). Simple things like short hair and low shoes make an enormous difference in my life.

How does this impact me as a professional? Changing gears has been difficult. I've slowed down in terms of work, travel, and research--some say too much, some say not enough, depending on who you talk to. Finding that balance has been difficult and awful, a series of trial-and-error, balancing input from colleagues and friends with my own stubborn insistence that I should not have to live like a cripple. I can't work from home as much as I used to--instead of being on the computer all night once I get home, monitoring email, working with documents and data and writing up research, I spend time with my husband who cooks dinner, massages my neck, and provides me the love, warmth and comfort I need as I only occasionally eyeball my email on my phone. I need at least 8 hours of sleep per night, but I feel my best at 10. My symptoms are worst in the mornings, and so depending on the season my schedule changes to arrange for the fact that I know I'll be late. Usually a hoarder of my vacation and sick time, I've become one of those folks whose leave time balance approaches zero and occasionally dips into the dreaded "Leave Without Pay" status.

I tell my staff to stay home when they feel unwell, but doing the same for myself is problematic, since "unwell" is every day, and more a matter of degree. I filed FMLA paperwork, but that doesn't in any way decrease the amount of work involved in my position, and so even when I am home sick and in pain, I stress myself to an unhealthy degree about the work I am not accomplishing, since I am responsible for it getting done regardless of what paperwork, doctors, and even my dean says. I come to work on days I shouldn't, and try to get as much done as I can before admitting defeat and heading home to the couch, or bed, or floor. As a department head, I'm responsible for managing staff; managing public service staff is not something you can do well from a distance. I've avoided going to the Disability Resources Office because I work hard to not consider myself disabled. ("I'm not disabled, I'm just sick" is a sort of personal mantra.) Really, though, I don't want to hear from them that there's nothing they can do to help me--I'd rather just not ask. I feel guilty around my colleagues for having been late on some projects. I feel guilty for slowing down--being on the tenure track adds the stress of a dossier that looks healthy up until the last two years. Already-difficult things at work like reorganizing a staff unit, managing the occasional disciplinary issue, and staff scheduling become even more difficult. I feel guilty that I look like a train wreck on one day, and appear fine the next -- I fear colleagues must think I'm crazy, lying, a hypochondriac, or all three. There's my working-class background showing: I know I'm not bleeding, and I don't always *look* sick, so I must be fine, right?

Things have improved. I still hurt, but I haven't been in the hospital for several months due to a combination of great doctors who listen, living in the future with its wonderful medications (hooray for chemists!), and simply doing less. My husband Jed is a miracle of a man whose patience, grace, and generosity humble me daily. I've been working closely with my dean and colleagues to ensure progress on a number of projects and to make sure things are properly prioritized so that if I do have to take time away the impact is lessened. Compared to last year, I think, things are staying on the rails better, and that gives me hope that I can be a productive member of my library team. I've learned that being at work in so much pain that I can't function really isn't any better than being at home and non-functioning due to medication; some days it really is better for me to stay home.

There are bright spots. Still, I feel professionally neutered. I wonder if I would have been hired into any of my library positions had this illness hit me earlier. Do my colleagues believe I'm still good at my job? Should I beg for a demotion so I don't hinder the progress of my agile, active library? Should I job hunt for something with fewer responsibilities? Would anyone hire me?

I write this not for pity or sympathy, but because this experience of becoming a member of the chronically ill has left me with a host of questions relevant to the workplace. "Disability" is a specific term when it comes to work, and I am too-able to be considered "disabled." It is a weird kind of limbo to be in - too chronically ill to be normal, not ill enough to be properly labeled and placed in a box (or protected class). As a librarian and manager, it leaves me wondering: how many of us are out there? My friends and a few of my colleagues know my details, but it isn't something I've discussed in detail with anyone else. How many of my colleagues, friends, staff, fellow professionals are trying to learn their new normal, or are living with a chronic illness, and trying not to let it impact their work? Do they feel isolated, and how can we help them feel included and heard? Do they feel constantly in danger, afraid that the workplace will get fed up with their absences, or the extra hours they can no longer give the job? It still surprises me how much energy it takes to be in constant pain. How can we, as builders of the workplace, alleviate as much of that worry as we can in a professional setting? What does chronic illness in the workplace look like, and how can we help people - selfishly, people like me - who want to work at full capacity but, depending on the day, may not be able to? How do we make people less afraid to ask for what they need?

I hesitated for a long while to blog about this, and even now I cringe as I hit the "Publish" button. I fear it hurts my chances at future employment, should I job-hunt again. I fear people will look at me differently, as though I am less-than-capable, or broken. Then again, Sarah Houghton has been an inspiration to me, both in her openness about her condition and what it takes to manage it, and because she manages to take care of herself while also being a kick-ass professional. In my social network, I've met other librarians and professionals in other areas who battle chronic illness, so I know chronic illness and professional usefulness are not mutually exclusive. And still, for me, it is the fear of the unknown, a struggle against my own body, and wondering this: if we are serious about employing the whole person, and encouraging that person to be as happy and healthy as possible while they work for us, how do we reach out and serve the chronically ill among us? How do we make these members of our professional world feel comfortable, and useful, and put them at ease about themselves and their needs as it relates to work? Those of us who are ill educate ourselves about our diseases, but does the workplace need to be educated too?

Or am I a kingdom of one?


Iris said…
I can relate to so much of what you wrote here. I don't have you're conditions, but the gist is the same. You are definitely not a kingdom of one.
Iris said…
ACK! I must be more tired today than I realized to do that you're/your thing. *embarrassed*
another librarian said…
Thank you so much for this, for a few reasons. First, it helps me empathize with some folks I know who struggle with long-term and chronic illness. Next, you probably know intellectually that there's nothing shameful about illness, even though it seems like you're feeling it... publishing this may not help you (I have no idea), but it's guaranteed to help others.

If you were managing someone in your situation, can you imagine advising them against going to the Disability Resource Office? You'd tell them it was ridiculous and self-defeating not to take advantage of resources that might be available. At the very least they might be able to offer some good advice and insight. Worst case scenario is that they can't help you... which doesn't leave you in worse shape than you are now, right?

You seem to be someone who has worked really hard for so long that now that you're in a more normal work-life balance, you feel guilty. I think you should try not to. You're not successful only because you sacrificed so much of yourself. You are still worthy!
chalyn said…
You are a rock star librarian and an all around bad a$$ chick. The world needs your perspective on this issue because far too many folks out there suffer from 'invisible' illnesses.

Thank you for sharing. And for being awesome and inspiring.
Unknown said…
I'm out here, and I hear you. Though my struggles with RA haven't been as severe as yours, I do still struggle, particularly with the concept of disability. I feel a great deal of shame around being sick, and the idea that my career will stall at middle-management because of my illness keeps me up at night.

Thank you so much for being brave enough to write this, Colleen. You've helped so many people by speaking out.
Unknown said…
Incidentally, the reason I cut off the dreads I had for 11 years (!) was because taking care of ALL THAT HAIR was so painful and time consuming it just didn't seem worth it anymore. I've been struggling with the idea of femininity and not feeling femme enough with short hair on top of all the illness and pain; hopefully you aren't struggling with the same.
Anonymous said…
Thank you so much for talking about this! I am hypermobile, and have suspected Ehlers-Dalos Syndrome (same as the Librarian in Black!), and know exactly what you are talking about.

I can particularly relate to what you were saying about being constantly worried that your bosses will get fed up at the amount of leave you take. I never have more than a day or two, and use up all my annual leave when I am in pain, which means I never have enough accrued to have a decent holiday.

I am glad to hear from managers who have the same problems as mean. It gives me hope that I might actually find some employers I don't need to fear disclosing my chronic illness to.

meredith said…
I'd take a smart and engaged librarian with chronic illnesses over a disengaged but healthy one. There are lots of people who are there all the time without contributing much to the organization. As someone who suffered in silence with an illness and worked herself to the bone instead of focusing on her health, I applaud you for making yours a priority. I know it isn't easy, but you are SO doing the right thing. And you're right that workplaces could be doing a lot more to make people suffering from chronic illnesses feel less horrible about what they probably already feel horrible about.
Unknown said…
Thanks for this. I was in a car accident a few months after I got my library degree and I was still in grad school starting an LIS Ph.D. I suffered a spinal cord injury that has me in the cane/crutch using camp. This sent my career on a different path, away from tenured librarianship, not entirely by my choice.

So I'm right there with you, pain, good days, bad days and all. How others perceive me is a concern, and at times self-sabotaging.

You're not a kingdom of one and I wish I had answers for the questions you pose in this post.
Ann said…
Yes, workplaces need to be educated. It doesn't mean we will all be treated compassionately; but, I tend to assume the best of people first.

I see it from both sides, as a person who struggles with issues stemming from an accident and I've had coworkers that have had chronic illnesses. I'm also a manager. I think that businesses and organizations are tasked with managing human resources. And sometimes those humans are not able to contribute as much one day as the next. I really think as a manager, it is my job to help staff succeed. The only way to do that is to have open discussions about what they can and can not do.

The funny thing is that we are all people with emotions. There, I said it! I worked at a library that had a very ill staff person who eventually passed away. We loved her so much; we didn't care that when she came back to work she wasn't working to full capacity. I have even worked with another person who was not well liked and had a chronic illness and yes, there were some eye rollers and grumblers; but, mostly people just accepted that she took more time off.

I like to think that people are ultimately accepting. And I do think it's our goodness and compassion that should override judgement about workload, etc.

I was in a bad accident and sustained a brain injury and broken things. About 10 months after my accident, I attempted to return to work. I couldn't walk very far and was pretty fragile emotionally. I was also pretty foggy and hadn't mastered any coping skills for remembering and planning. My coworkers welcomed me back with open arms and propped me up at the reference desk.I was only working 12 hours over two weeks but it was too much and I left. But, I left. I think they would have let me sit at the desk indefinitely and just accepted whatever I could give.

Now, I struggle with chronic pain and fatigue from the pain and I have pretty significant fatigue from concentration (reading, learning, driving)and stress. But, I'm 8 years out now and I'm finally getting to the point where I just don't care what other people think. I can't control what they think. I can, if needed, educate them about brain injury and pain management. Ultimately, I am in control of my own health. I get to call the shots regarding my work/life balance. I spend most of my vacation sleeping/resting; but, my off work time is extremely precious and I won't lose too much of it to recovering so that I can work. I have creative interests and a partner.
You are not alone. I understand your worries about the future and future employers tracking down these confessions some day; but, I think you just have to be you.
I would say this: Accept that you are doing the best that you can in each moment. I really feel that's the truth of it.
Jenica said…
This morning I started the a library faculty retreat in a way I hate: with an apology. But I had to. I'm hypermobile, and I've been more unstable this week than in a while, and I've had migraines and haven't slept much. So I was, going into 5 hours of facilitating and discussion, a little loopy. I felt the staff needed to know that.

And my hope is that when I acknowledge that I battle chronic pain and am still a functional and useful professional, I'm also making space for people to acknowledge their own illnesses, issues, and disabilities, knowing that they too are still functional and useful. We're all people; we've all got baggage and issues. It doesn't make it easier to own or love or accept our own, but maybe it makes it easier to accept truth from others with compassion.
Ruth said…
oh, Colleen. You are SO not alone! I'd like to add my thanks to the pile you already have, for being courageous enough to publish this. I'm fortunate (blessed!) enough to work at a place and for a boss that is willing to work with me to accommodate my bad days, and I too worry about my future employment situation, and dance along the edge of "leave without pay" on a monthly basis. All we can do is the best we can. (Some days that sounds so pathetic ... but whaddaya gonna do?)

Thank you, thank you.
Mark Kille said…
You are not at all alone.

And you should definitely talk to the relevant HR people. You are 100% justified in starting a conversation about reasonable accommodation. There is literally no such thing as "not impaired enough" when it comes to how the ADA is put into practice. It is only a question whether accommodating someone so they can still perform the essential duties of their position will place an undue burden on the employer. Which is defined by the employer's resources, not some abstract scale of "this makes sense and that doesn't."

It is also completely illegal for people to take adverse employment actions (refusing to hire, imposing discipline, even given a cold shoulder if it is persistent and pervasive enough) on the basis of actual or perceived disability.

I am not a lawyer, and more importantly, I'm not *your* lawyer. But I've sat through multiple presentations by multiple lawyers, one of them actually connected to the organization I was working for. You have *nothing* to be ashamed of, and anyone who gives you crap about it is a jerk who deserves all kinds of informal and formal sanctions.
Anonymous said…
Thank you for this post. Everything you've written here resonates. You are not a kingdom of one. I've been diagnosed with Ehlers-Danlos Syndrome (Hypermobility Type) amongst other things and like what you are dealing with, there is no cure, just "symptom management". I am not "out" about my condition at work and am currently trying to maintain my high performer status in the library. Work/life/health balance is something I am currently struggling with A LOT. Its just good to know I'm not alone.

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