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?