An important part of the initiation of Write Where It Hurts came from Xan Nowakowski and J. Sumerau’s experiences collaboratively managing chronic conditions in relation to their professional and personal relationships. Building on Xan’s previous post in this area, in this post J. Sumerau reflects on aspects of managing chronic mental and physical health conditions in hopes of facilitating dialogue about these issues within and beyond the academy.
Although often invisible to the naked eye in social and professional interaction, estimates suggest as much as half the American population live with chronic mental and / or physical health conditions, and must manage such conditions throughout their daily lives. In this post, I reflect on some of my own experiences as one of these people in hopes of facilitating dialogue on this subject.
In so doing, I am seeking to build on the bravery of other scholars who have already addressed experiences with chronic conditions in many ways. Whether we look to recent blog posts (often anonymous) by people exploring, for example, aspects of bipolar conditions, experiences along the autism spectrum, managing dissociative identity disorders, or persistent anxiety, we can already see the silence around chronic conditions beginning to dissipate. I thus seek to contribute to these voices in hopes of continuing to, as DeWelde and Stepnick title their important volume exposing gender inequality in the academy, “disrupting the culture of silence” around chronic conditions in the academy.
To this end, I want to start by noting that on the surface – or from the outside so to speak – I generally appear to be a rather productive scholar. In fact, I regularly encounter people (well meaning, kind and complimentary people, best I can tell) who say things to the effect of “how do you get so much done” or “I wish I was as productive as you” when they realize that I only began graduate study 7 years ago but already have over 30 academic publications. I appreciate the kindness and compliments these people offer me, and I am proud of my work personally and professionally because doing this work is the closest I ever get to feeling like I might fit in somewhere.
I do not, however, note these experiences to boast in any way. Rather, I note these experiences because people might never think of me when they hear about scholars managing extremely painful and difficult chronic conditions. I have regularly heard people at conferences and in other settings assert negative stereotypes about people with enduring mental and physical conditions, which suggest these people are rare (false) and / or that these people are obviously or automatically different or deviant (false) and / or that visibly managing conditions or otherwise these people are somehow less capable than their normatively bodied or mental colleagues (false again). Like many of the scholars I am aware of managing such conditions, my constant struggle to exist is invisible to the casual glance, and still others face similar struggles managing more visible conditions. In both cases, every scholar I have come in contact with who is managing one or more chronic health conditions is at least as competent as any other scholar I have seen and often actually perform well above the average in their fields (Charles Darwin likely being the most famous example).
The mismatch between stereotypes and actual scholars managing chronic conditions is likely familiar to anyone versed in inequalities scholarship. Similar to people stigmatized via normative or dominant notions of race, class, gender, sexualities, and age to name a few, people whose minds and bodies work differently are typically framed as deficient or deviant. We are called diseased instead of simply different, our experiences are called disorders instead of variations, and our abilities are called lesser instead of diverse. In all such cases, we are assaulted for not fitting artificial norms about how human bodies and minds “should work” so that others who benefit from these norms do not have to reevaluate their own mind and body assumptions. As has traditionally been the case, many of us have realized that these patterns will only change if we begin announcing ourselves to the rest of the world and challenging mental and physical ablest assumptions embedded within academic and other social arenas.
To this end, I would like to share some things about my experience managing chronic conditions that I hope people will think about when they assume bodies or minds should be or work in a certain way. While strangers, colleagues, and acquaintances may look me up, meet me at a conference, see me speak, or otherwise come into contact with me, their view will generally be different from the people closest to me. While such people (based on their reactions to date) will likely see my “productivity” or “talent” first and foremost, those closest to me see how little I sleep because my brain won’t stop working, how many hours and days (and even at times weeks) I spend curled up in a ball in the dark because I feel like the world is trying to kill me, how confusing normal or common speaking patterns are to me and how much energy it takes me to have a five minute conversation with another person, scars scattered around my body from the regular times where it feels like my skin is too tight, and the constant headaches I live with and medicate.
The people closest to me also know that I always keep pills and ice packs nearby because I’m always in at least some physical pain due to issues with my legs. They also know that I regularly hear and see things that other people do not, and get used to me randomly having conversations with people and things they cannot see when we’re together. They also understand what its like to get a call from me when I’ve forgotten who I am, when I don’t know where I am, when I’ve gotten lost on the way to work again, when I think they’re dead but I want to check, when I think I’m dead but want to check, or when I can’t figure out how to put on clothes or feed myself. They also have the patience to look after me when, for example, I wander off following something that they can’t see, disappear mentally in the middle of a conversation without realizing it, or ask them if they’re real because I suddenly don’t know. They also understand when I throw out all my spoons because I’m convinced they’re out to hurt me, when I go whole semesters without working on our projects because my brain just won’t work, when something as simple as going to the grocery store terrifies me or tires me out emotionally, or when I just can’t interact at all for a while and need to be completely alone in silence or with music.
The people closest to me also are not surprised when I don’t buy shoes with laces because they already know that while I can memorize books I can’t tie shoelaces. They are not surprised (and often kindly try to protect me) when the thought of anyone being behind me terrifies me, when human contact makes me literally sick to my stomach (a wonderful example was a friend at a conference who once made controversial statements each time someone went to shake my hand so they would be distracted and I wouldn’t have to explain why I was not going to touch them), or when I have trouble even breathing in a large group of people (even people I like and care about) because I feel like the presence of others is suffocating me. They can even explain to other people why I spend so much time outside since sometimes walls feel like cages, why its much better to contact me online where I don’t have to talk to or see anyone, or how I might shift from the most hyper person they’ve ever met to the most comatose person they’ve ever met within a few minutes.
As you can probably tell, the people closest to me are wonderful people who make a very difficult world more comfortable for me in numerous ways. I find myself appreciating them more than words can say every moment I’m conscious, and without their efforts every aspect of my life other than writing would be much more difficult because I work in a profession where who you know, networking, and other social interaction skills are often just as and / or far more important to careers than how productive you are. This was a hard lesson for me when I arrived in the academy because I can write 10 or more solid articles in a semester but I will never know what to say at a mixer or conference surrounded by frightening strangers. This is all the more important because the conditions that facilitate the above examples are not likely to ever go away, and thus an academy based on the ability to “make small talk with the right people” automatically disadvantages me no matter how good a researcher I am or become.
I am able and willing to share these aspects of my experience, however, because in many ways I have been lucky enough to receive incredible emotional and instrumental support throughout my time in the academy. The people closest to me and especially my life partner, for example, are very understanding and protective of me, and many of them have the resources to protect me even if my disclosure leads other to stigmatize me in some regard. Likewise, I am incredibly productive because, as Matt Damon’s character says in Good Will Hunting, when it comes to research and writing – I can just play. I might not be able to do most of the things normatively bodied and minded people do so easily every day, but I write on as high a level and as fast as anyone I have ever met. The same things that make most of social life so hard for me provide me with abilities that are perfectly suited to the scholarship part of an academic career (i.e., I can read a book in an hour and memorize it, cite findings from years past off the top of my head, take apart anything I read or see or hear and turn it into patterns and themes without even meaning or actively trying to, etc.). Further, from my earliest days in graduate school to my present academic position, I have had mentors in my programs, in other programs, in Sociologists for Women in Society, and in Society for the Study of Symbolic Interaction who were and still are kind enough to accept and help me in countless ways as I try to survive the necessity of being social in the construction of an academic career.
It is also with these resources in mind that I remain well aware that many people managing chronic conditions everyday cannot safely speak out about their experiences, marginalization, and /or aspects of ablest bodily and mental assumptions and norms that impact their academic careers. I also know all too well that in many cases chronic conditions do limit productivity in terms of normative metrics like publishing in much the same way they limit me socially, and the only way to shift these burdens is for those of us who can to start speaking out and advocating for a more realistic understanding of the multiple aspects of scholarly experiences and lives and the natural variation in the ways human bodies and minds operate.
I thus share my experiences in hopes of facilitating dialogue concerning the management of chronic conditions in the academy (and elsewhere), steps we could take to provide resources for such management within academic settings and programs, and concrete ways we could begin to shatter the stigma and silence surrounding this prominent and widespread experience. For many people, mental and physical conditions will not go away, but if we work together, we could get rid of the ways current academic norms, simplistic and conformist assumptions about bodies and minds, and silence surrounding mental and physical health within and beyond the academy punish people for their pain. In so doing, we might instead create a culture where people experiencing the wide variety of empirically common bodily and mental types and forms are celebrated, affirmed, and accepted as full beings capable of providing diverse perspectives on a complex bio-social world.by