Developing a long-term illness, whether chronic or acute, is like being dropped into a country completely unfamiliar to you. You don\u2019t 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\u2019t stop being hard, but the learning curve becomes less steep and the isolation less intense. <\/p>\n\n\n\n
However, unlike when you\u2019re immersed in a new country and culture, you\u2019re falling into this new place and experiencing that painfully slow acculturation while you\u2019re trying to still live your regular life in parallel. You\u2019re expected to be a good parent, partner, family member, friend, employee, housekeeper, bill-payer, etc. But you\u2019re living in two different realities now and because of that, it\u2019s easy to feel alienated from your regular life, especially if you don\u2019t 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.<\/p>\n\n\n\n
It\u2019s 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\u2019t 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 \u201cno\u201d 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\u2019t 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 \u201cthis doesn\u2019t sound rheumatological at all.\u201d 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\u2019m going to court and I\u2019m ready to be cross-examined, to be picked apart. I\u2019m a bundle of nerves.<\/p>\n\n\n\n
And my experience is painfully common, especially for women, as poet Meghan O\u2019Rourke writes in her amazing book about chronic illness, The Invisible Kingdom<\/em><\/a> <\/em>(a meditation on and journalistic exploration of chronic illness and how it is positioned in our social fabric):<\/p>\n\n\n\n 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, \u201chave been labeled hypochondriacs in the earliest stages of their illness.\u201d 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)<\/p>\n<\/blockquote>\n\n\n\n Once I got on meds for my condition that finally started working (most first-line meds for autoimmune conditions take three months<\/em> 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\u2019t the full picture. And each doctor I\u2019ve seen hyperfocuses on something different and ignores every other aspect of my case. It\u2019s all making me feel like I\u2019m going crazy. <\/p>\n\n\n\n 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\u2019s basically my last best hope in the state. She wouldn\u2019t even give me differential diagnoses last time beyond \u201cit\u2019s clearly autoimmune given your systemic symptoms.\u201d She\u2019s the one who has put me on a serious immunosuppressant with debilitating side effects, which I guess at least shows she\u2019s taking it seriously, but if she doesn\u2019t know what she\u2019s 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 \u201cnothing is more threatening to who you think you are than a patient with a problem you cannot solve\u201d (quoted in The Invisible Kingdom<\/em>, page 209) and I feel that in how I\u2019m 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 \u2013 it\u2019s felt more like a game of \u201cnot it.\u201d<\/p>\n\n\n\n Of a similar liminal moment in her own illness, O\u2019Rourke wrote, \u201cin 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\u201d (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\u2019Rourke, 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\u2019m barely sleeping, I\u2019m spontaneously bleeding from my skin and under my skin, and I\u2019m so itchy I sometimes have to wear gloves to bed or I\u2019ll scratch myself raw in my sleep. You feel like you\u2019re play-acting being yourself, being a person in the world, because you\u2019re not really there anymore. And when you\u2019re suffering, and don\u2019t know what your illness is, and you feel abandoned, it\u2019s 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\u2019Rourke wrote, \u201cyour sense of story is disrupted\u201d (p. 259) and you feel like a stranger to yourself.<\/p>\n\n\n\n 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\u2019t prioritize family obligations over work ever (though working during family time? Totally ok, right?<\/em>). 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 \u2013 their caregiving responsibilities, their health, the people they love, etc. They feel like they can talk about these things \u2013 that they don\u2019t 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\u2019re 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. <\/p>\n\n\n\n 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 \u201ctake what time you need\u201d when someone is facing illness is enough. But I think two pieces are missing from this. First, managers need to not only say \u201ctake what time you need\u201d but work with their direct reports to address the work that would otherwise pile up. If you say \u201ctake all the time you need\u201d but all the work with its stressors and deadlines is still there, you\u2019re 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? <\/p>\n\n\n\n Also, managers need to model vulnerability, transparency, and being whole people themselves. If they put up a false front of strength, if they\u2019re not willing to be vulnerable and human and real themselves, if they do not model transparency, there\u2019s 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 \u2013 we all thought the world of her. Even when she made decisions that people didn\u2019t 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\u2019t think that\u2019s 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. <\/p>\n\n\n\n In a culture where we don\u2019t feel like we can bring ourselves fully to work, I don\u2019t 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\u2019s lives are complicated and messy and there\u2019s probably a lot of suffering I know nothing about happening all around me. If they don\u2019t talk about it, who am I to talk about it? I\u2019m not special. While I\u2019ve 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\u2019re asking for \u201cspecial treatment.\u201d I read recently (can\u2019t 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\u2019s identities and think about the double life that forces them to live.<\/p>\n\n\n\n At work I feel a lot of shame about being sick and I work more than I should given how I\u2019ve been feeling (this is common). I feel like I need to mask how I\u2019m really doing, that people don\u2019t want to hear it. And it\u2019s true that most don\u2019t. 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\u2019ve learned to just pretend it\u2019s all ok or say nothing. I know that some of my reticence and shame comes from my own internalized ableism as it\u2019s 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. <\/p>\n\n\n\n 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\u2019t 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\u2019s 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\u2019t 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\u2019d 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\u2019s 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\u2019t hear anything after that. This September, the all-library meeting was held in our campus library where the windows don\u2019t 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\u2019d 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<\/em> 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?<\/p>\n\n\n\n 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 \u201cgood,\u201d \u201cfun,\u201d \u201crestful,\u201d etc. How do you talk about a \u201cvacation\u201d 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\u2019s 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 \u201cit was good!\u201d and move on. Who wants to be a buzzkill? <\/p>\n\n\n\n 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\u2019re a manager and you\u2019re 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\u2019t check in to see how things have been going for them, you\u2019re sending the message that you don\u2019t want to hear about these things, that they make you uncomfortable, that they’re not appropriate to take to work. I think we\u2019ve 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<\/em> article entitled \u201cYou know someone with Long COVID. They need you to ask about it genuinely\u201d<\/a> <\/p>\n\n\n\n Approach us with empathy and curiosity. Ask questions that show a sincere desire to understand. How are you feeling this week?<\/em> works because it acknowledges the chronic, fluctuating nature of my health. Or a version of Nunez\u2019s question, and one I\u2019ve longed to be asked since I\u2019ve been ill: What has this been like for you? <\/em><\/p>\n\n\n\n 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 \u2014 but never being asked certainly does.<\/p>\n<\/blockquote>\n\n\n\n While I don\u2019t 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 \u201chow are you feeling this week?\u201d instead of feeling like I have to pretend I\u2019m okay. I told my manager at the start of Fall term that my autoimmune disease had become significantly worse and that I didn\u2019t 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\u2019t 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\u2019s 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\u2019d 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.<\/p>\n\n\n\n <\/p>\n","protected":false},"excerpt":{"rendered":" Developing a long-term illness, whether chronic or acute, is like being dropped into a country completely unfamiliar to you. 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