The double life of being chronically ill at work, slow librarianship, and checking in as an expression of care

Developing a long-term illness, whether chronic or acute, is like being dropped into a country completely unfamiliar to you. You don’t know the language, the customs, the cuisine, the people. You feel alone, isolated, and totally out of your depth. Eventually, you start to learn the language, the customs. You find community, fellow travelers, people who can help you understand your new life better. It doesn’t stop being hard, but the learning curve becomes less steep and the isolation less intense. 

However, unlike when you’re immersed in a new country and culture, you’re falling into this new place and experiencing that painfully slow acculturation while you’re trying to still live your regular life in parallel. You’re expected to be a good parent, partner, family member, friend, employee, housekeeper, bill-payer, etc. But you’re living in two different realities now and because of that, it’s easy to feel alienated from your regular life, especially if you don’t feel like you can bring that other part of yourself to your interactions at work, at home, or out with friends. The cognitive dissonance can be jarring.

It’s hard enough to live that double life, but adding in the vagaries of seeking out a diagnosis and often not being believed, not to mention coping with the symptoms themselves, can make life feel completely untenable. Before my autoimmune diagnosis, I spent more than a year seeing medical professionals who didn’t believe there was anything wrong with me other than the normal discomforts of aging. I kept asking doctors if they thought my symptoms could be autoimmune and was told “no” over and over again, though that felt wrong to me. One PA suggested that some of my symptoms might stem from anxiety since I have a history of anxiety (like I wouldn’t know at this point what anxiety feels like). Within five minutes of talking with the first rheumatologist I saw, after waiting five months for the appointment, he said to me “this doesn’t sound rheumatological at all.” Luckily he still did all the standard testing which showed that he was very wrong. But not being believed by so many doctors for so long stays with you. It leaves a scar. Every time I see a doctor now, I feel like I’m going to court and I’m ready to be cross-examined, to be picked apart. I’m a bundle of nerves.

And my experience is painfully common, especially for women, as poet Meghan O’Rourke writes in her amazing book about chronic illness, The Invisible Kingdom (a meditation on and journalistic exploration of chronic illness and how it is positioned in our social fabric):

And so it is a truth universally acknowledged among the chronically ill that a young woman in possession of vague symptoms like fatigue and pain will be in search of a doctor who believes she is actually sick. More than 45 percent of autoimmune disease patients, a survey by the Autoimmune Association found, “have been labeled hypochondriacs in the earliest stages of their illness.” Of the nearly one hundred women I interviewed, all of whom were eventually diagnosed with an autoimmune disease or another concrete illness, more than 90 percent had been encouraged to seek treatment for anxiety or depression by doctors who told them nothing physical was wrong with them. (p. 103)

Once I got on meds for my condition that finally started working (most first-line meds for autoimmune conditions take three months on average to produce any effects on the immune system), I thought I was past the worst of it. Other than occasional much smaller flares, I was essentially in remission. I learned my limits. I protected my spoons with my life. I kept my stress low. I felt like I had it figured out. I felt good even. And then I got sicker with new symptoms that have stolen so much from me, including my sleep. The past 10 months have honestly been a nightmare with a carousel of doctors who all have completely different theories of what is going on and with a condition that is constantly evolving so what they see in the moment isn’t the full picture. And each doctor I’ve seen hyperfocuses on something different and ignores every other aspect of my case. It’s all making me feel like I’m going crazy. 

Each wrong diagnosis brought me to another country, another reality, another identity, that I lived in for a short while. And in each of these countries, I spent countless hours learning, learning, learning all I could, going down research and subreddit rabbit holes, and spending way too much money on products that did nothing because none of those diagnoses were correct. The dermatologist I see who specializes in autoimmune conditions at a research university seems to have given up even trying to diagnose me and she’s basically my last best hope in the state. She wouldn’t even give me differential diagnoses last time beyond “it’s clearly autoimmune given your systemic symptoms.” She’s the one who has put me on a serious immunosuppressant with debilitating side effects, which I guess at least shows she’s taking it seriously, but if she doesn’t know what she’s treating me for, how does she know that this drug that is making me feel terrible is even going to help? Atul Gawande said of doctors that “nothing is more threatening to who you think you are than a patient with a problem you cannot solve” (quoted in The Invisible Kingdom, page 209) and I feel that in how I’m treated at every appointment I go to. With the exception of the charlatan immunologist who was desperate to diagnose me with MCAS though there was no evidence in support of it, not one doctor has seemed at all interested in figuring out what this is – it’s felt more like a game of “not it.”

Of a similar liminal moment in her own illness, O’Rourke wrote, “in my illness I was moored in an unreachable northern realm, exiled to an invisible kingdom, and it made me angry. I wanted to rejoin the throngs. In dark moments I continued to wonder if the wrongness was me” (99). And of course people will feel like that wrongness is them when we live in a culture that views chronic illness as some sort of weakness or something we caused through through our own bad habits. Like O’Rourke, I feel both exiled from my world and forced to be in it at the same time, which is a unique form of torture. Going to work, pretending things are ok, doing my job, meeting deadlines, helping students, smiling, all the while my body is attacking itself, I’m barely sleeping, I’m spontaneously bleeding from my skin and under my skin, and I’m so itchy I sometimes have to wear gloves to bed or I’ll scratch myself raw in my sleep. You feel like you’re play-acting being yourself, being a person in the world, because you’re not really there anymore. And when you’re suffering, and don’t know what your illness is, and you feel abandoned, it’s easy to go down rabbit holes of self-loathing along with those rabbit holes of fruitless research that make you feel like an unhinged obsessive with a murder board and yarn. As Meghan O’Rourke wrote, “your sense of story is disrupted” (p. 259) and you feel like a stranger to yourself.

I started writing about slow librarianship long before I got really sick, but even then, I knew the importance of fostering a work culture where you can be a whole person. I knew how it felt to have a child and feel like you couldn’t prioritize family obligations over work ever (though working during family time? Totally ok, right?). In a workplace that encourages people to be whole people, workers feel like they can prioritize the things in their lives outside of work that are important – their caregiving responsibilities, their health, the people they love, etc. They feel like they can talk about these things – that they don’t make them liabilities. They can be vulnerable and real. And feeling like you can be vulnerable and real about who you are and how you’re doing means that you can also be vulnerable and real in your work, which makes us better employees who are energized to try new things.

I think a lot of people in positions of power might even want a culture like this, but very few actively create it. They might think that saying “take what time you need” when someone is facing illness is enough. But I think two pieces are missing from this. First, managers need to not only say “take what time you need” but work with their direct reports to address the work that would otherwise pile up. If you say “take all the time you need” but all the work with its stressors and deadlines is still there, you’re not really giving people space. Can you take good care of yourself while you watch the work pile up and up and up? How many of us have come back to work while still not fully recovered from an illness because of the work that was piling up or a class they needed to teach? 

Also, managers need to model vulnerability, transparency, and being whole people themselves. If they put up a false front of strength, if they’re not willing to be vulnerable and human and real themselves, if they do not model transparency, there’s no way that others will feel safe doing so. I was lucky to have a boss in my first academic library job who was deeply human in her interactions with her employees, so I got to see what that looked like. And it was her humanity that engendered fierce loyalty in her employees – we all thought the world of her. Even when she made decisions that people didn’t like (which was rare as she really did take our insights to heart), she explained her thinking in a transparent way. Given my later experiences, her way of being feels vanishingly rare. I think a lot of managers feel like they need to project strength, not explain their decisions, not let their direct reports really know them as people with full lives, but I don’t think that’s true. A lot of managers operate out of a place of fear or insecurity, but my first academic library director was confident enough to be her full self, flaws and all. 

In a culture where we don’t feel like we can bring ourselves fully to work, I don’t feel like I can talk about my illness. I feel selfish and weak for even considering it. Like, we all have shit going on, right? The world is pretty awful right now. People’s lives are complicated and messy and there’s probably a lot of suffering I know nothing about happening all around me. If they don’t talk about it, who am I to talk about it? I’m not special. While I’ve mentioned being sick at work in the context of being immunocompromised and needing to protect myself and not participate in large, crowded events, even that has felt really uncomfortable. Everyone should feel like they are important enough to their places of work and valued enough to bring up these things without feeling embarrassed or like they’re asking for “special treatment.” I read recently (can’t remember the source) that close to 60% of people with chronic illnesses have not told people at work about it. Imagine hiding something that is such a pivotal and ineluctable piece of many people’s identities and think about the double life that forces them to live.

At work I feel a lot of shame about being sick and I work more than I should given how I’ve been feeling (this is common). I feel like I need to mask how I’m really doing, that people don’t want to hear it. And it’s true that most don’t. There are three people at work I can talk to about my illness, but others seem so incredibly uncomfortable when I mention it, so I’ve learned to just pretend it’s all ok or say nothing. I know that some of my reticence and shame comes from my own internalized ableism as it’s the water we all swim in, but when I worked in that library where the culture encouraged vulnerability, humanity, and care, I remember how different it felt. How much less distance there was between the person I really was and the person I was at work.  

In a meeting last year, our Dean was talking about making the next all-library meeting in-person only. Previously, they had always offered them hybrid, but she didn’t like that most people were choosing not to come in-person. And I totally get it, even though it sucks to always be the outlier. She wants it to be a team-building experience and that’s really hard to do when most people are participating from home with their cameras off. At that meeting, for the first time, I disclosed my illness in front of a bunch of people and talked about how important it is to always offer an online option for folks who are medically vulnerable or at least find ways to make indoor spaces safer for those who can’t afford to get sick. My boss then asked to meet with me to talk about how to make our spaces safer. I talked about airflow, encouraging and providing masks, and, during temperate months, having the meetings at places where windows and doors can remain open or even holding them outside (we’d had one meeting at a park a few years ago which had been the best one ever from both a health and team-building perspective). I suggested that we make the Winter meeting fully virtual since it’s the height of flu season and you can usually get people participating more in a fully virtual meeting than a hybrid one, where the online people feel like weird lurkers. I was thanked for my feedback and didn’t hear anything after that. This September, the all-library meeting was held in our campus library where the windows don’t open (albeit with a couple of HEPA filters scattered around, but I know we do have large college spaces where doors and windows can be opened because I went to an all-day union meeting in one where they did just that and we’d used that space for library meetings in the past) and our February meeting is going to be held in-person during the worst flu season in decades. Obviously, none of this was personal or intended to cause harm, but, at the same time, how should I feel under the circumstances? Clearly speaking out in that meeting, something that I had to really steel myself to do, had been pointless. Why would I ever bring it up or ask for anything again?

When we come back from winter break, people inevitably ask each other how it was, but do they really want to know? I think they want to hear “good,” “fun,” “restful,” etc. How do you talk about a “vacation” in which you spent most of it doubled over in pain after eating anything thanks to the toxic meds you have to take and your father-in-law was in the hospital dying the entire time? I wish that I felt I could share what an absolute shitshow it’s been, to feel like I could be a full person at work, but when you know no one really wants to hear it, when it just makes people uncomfortable, it becomes so much easier to smile and say “it was good!” and move on. Who wants to be a buzzkill? 

Slow librarianship puts worker well-being over productivity and deadlines, allows workers to be whole people at work, and supports a culture of care. While a radical idea, this even makes good business sense because depleted and burned out workers have been shown to be a major drain on the organization and negatively impact the culture. If you’re a manager and you’re not actively fostering a culture where people can bring their whole selves to work, then you are fostering a culture where people do not feel safe being vulnerable and having needs. Workers, if you know a colleague is struggling with something (an illness, losing a loved one, a difficult caregiving situation, etc.) and you don’t check in to see how things have been going for them, you’re sending the message that you don’t want to hear about these things, that they make you uncomfortable, that they’re not appropriate to take to work. I think we’ve all probably been guilty of this at some point in our lives and maybe we even thought that not asking was the right thing to do. I can imagine some people think that asking is invasive or reminds the person that they are sick, but it is an expression of care. As Philip Hoover writes in his excellent Sick Times article entitled “You know someone with Long COVID. They need you to ask about it genuinely” 

Approach us with empathy and curiosity. Ask questions that show a sincere desire to understand. How are you feeling this week? works because it acknowledges the chronic, fluctuating nature of my health. Or a version of Nunez’s question, and one I’ve longed to be asked since I’ve been ill: What has this been like for you? 

If our response is tough to hear, try not to smother it in optimism. And tread lightly. While some long-haulers may appear okay in public, much of our suffering occurs in private, shade-drawn rooms, across lonely afternoons, stuck in bed. When in doubt, remember that the act of asking never hurts — but never being asked certainly does.

While I don’t have Long COVID, this piece so perfectly encapsulates how I feel as someone with a mostly invisible chronic illness who would just love to be asked “how are you feeling this week?” instead of feeling like I have to pretend I’m okay. I told my manager at the start of Fall term that my autoimmune disease had become significantly worse and that I didn’t know what my capacity might look like going forward. She expressed sympathy, told me to take what time I needed, and never checked in with me after that. That September, I was taking over a very important committee chair role that was made enormously more time-consuming and onerous by the departure of the three colleagues most involved in supporting this work (two of whom had more than 20 years of institutional knowledge locked up in their heads). I didn’t feel like I had the leeway or support to let things drop as more and more kept piling up on my plate related to my chair role and it became clear that I was expected to do a lot of onboarding for the new people in this role even though I was new to my role and was no one’s manager. While I know my boss is extraordinarily busy, the message that not checking in with how I was doing sent me was very different from what I assume she’d wanted to convey. Checking in with a colleague or direct report seems like such a small thing, and it is in terms of the effort it requires, but the impact it can have in making someone feel cared for and less like they have to live a painful double life is enormous.