Learning to talk about lupus

When I was diagnosed with lupus in 2015, it felt pretty life-changing. I could no longer count on my body in the same way. I could no longer make plans. I could do longer predict if I’d have the energy to commit to a dinner party held that week, much less if I’d be up for traveling to upcoming events like conferences and weddings. If I’d have the stamina to teach my classes each week. If I’d have enough mental clarity to produce good work. Long-term, it was really hard to know what type of career I might be physically or mentally prepared to do.

Because, here’s the thing about lupus. It never goes away. It — and the limits it produces — are going to be around for the long haul. This is because lupus is a chronic condition without a cure. A deficiency in my DNA will forever lead my cells to get confused and, instead of helping fight off diseases, they will attack my body. Lupus will attack a bunch of things, but mostly joints and organs (with skin being one of the most common organs susceptible to lupus damage). Because it’s an immune response, the type of things that normally rev up immune systems activate it: stress, lack of sleep, overuse of body parts, being exposed to germs, and sun. So, when I’m exposed to those things, my immune system deploys and, with it, my lupus does as well.

When lupus is active, a lot of things become inflamed. This is because inflammation is the natural immune response; my immune response is just on overdrive. When I was in the throws of a major flare and these haywire cells were running rampant, I had intense rashes all over my face and arms due to my skin being inflamed. My scalp also became inflamed, and I lost most of my hair. All of my joints were swollen and hurt — my knees, my shoulders, my fingers, my arms. The cartilage between my ribs became swollen. It hurt to move, to walk, to bend my knees. I would wake up in the night with feverish sweats. I would feel like passing out if I stood up for too long. Eventually, my immune system started attacking my kidneys, which could lead to some pretty serious shit.

Women sits in bed, holding her knees
Lots of bedrest in those days.

I was living in Syracuse at the time, finishing up my PhD. Thankfully, my grad school friends really rallied to care for me in whatever ways they could. They visited me in the hospital, had chill movie nights with me, drove me around when needed. My department was relatively supportive, giving me breaks on chapter deadlines. That said, I realize now that I wasn’t entirely honest with anyone about my limits.

I would rarely cancel class. I’d say yes to a large majority of the social plans I was invited to. Hell, I’d even offer to host and do the cooking for some of our biweekly dinner parties. While I did talk about my symptoms quite a bit, for I am not one to fully suffer in silence, it felt awkward to make my illness a focus of conversation. It was guilt-inducing to flake on a plan, or to say no in the first place. While I knew that lupus was changing my life, I think I was in a period of denial where I neglected to fully realize the degree to which my limits had shifted.

I wrote in my last post how much I resist showing melodramatic emotions. I think that is because I, in part, really don’t want to be viewed as a victim, or to be seen as weak. This feels undesirable; it feels, to quote Phillip Lopate in his take on victim narratives, “repellent” (36).

In film and literature, the melodramatic victim operates as a very identifiable archetype. She is often young and frail. In cinema in particular, she is usually white, blonde, and lit in such a way that her skin has an ethereal, angelic quality (Dyer 66). You can find her fainting, or perhaps tied to the railroad tracks by a mustachioed villain. Some famous examples that come readily to mind are Eva St. Claire on her death bed in Uncle Tom’s Cabin or Lillian Gish in D.W. Griffith’s Way Down East where she is seen floating unconscious towards a treacherous waterfall. Essentially, she is one who needs to be saved.

Cover of Way Down East featuring Lillian Gish getting saved
Cover of Way Down East featuring Lillian Gish getting saved
Gish is saved from plummeting to her death.

In addition to looking weak, frail, and in need of a savior, melodramatic victims are also silent. Sarah Kozloff explains that the melodramatic woman must “wait with humility, patience, and passivity until others spontaneously recognize the truth. Her ability to endure — and to hold her tongue — is what makes the central character so heroic. Her silence is simultaneously a mark of her martyrdom and of her power” (Kozloff 244). While melodrama often details how painful it is for women to remain silent, it grants their silence a moral superiority. When they do speak, they must do so carefully and quietly. In contrast, melodramatic women who do not look and sound virtuous are classified as bad women and are punished and/or villainized for their actions (Basinger 84). This really puts women in a double-bind: they can be good or they can be bad. Their directive remains: stay quiet, be good, don’t express your pain. If you give voice to your suffering and make a fuss, you are bad, a nuisance. So, women must endure. Wait silently for their virtue to be recognized. And hopefully, that virtue will mean that they are worthy of being saved.

Critics almost universally dislike the melodramatic victim. Her emotions are too-over-the-top. Her heart wrenching tales are sickly sweet. She sets a bad example for our young girls. She’s too accepting of the status quo. This is why comedy operates as such an attractive medium. Look at what women can do in comedy, they say. She can be daring. She can defy that double bind. She can demand a change to women’s plight. Linda Mizejewski, for one, argues that comedy grants women a platform through which they can contest the patriarchal ideologies of proper femininity that melodrama itself endorses (35).

I think this is what felt so hard about being as sick as I was. I felt like a victim. I had no funny stories to tell about this time. I was just really weak. Despite the rashes, my skin had grown pale. I dropped twenty pounds in a month. I was legitimately constantly on the verge of fainting. I was unable to do things for myself. If we’re looking at the details from the outside, it seems as if I was one step away from my own melodramatic deathbed sequence. But, to acknowledge that victimhood, to speak my truth, made me feel deeply uncomfortable. I had no humorous anecdotes through which to filter the experience. Speaking my experience as I lived it made me feel like an irritant. I was no longer the fun friend, the productive worker, the valuable member of society. And, if I made a fuss about it, I became an annoying woman who demanded that society cared about my plight, rather than one prepared to accept her fate silently as good women should. Ones who didn’t make people feel uncomfortable.

An image of Eva’s deathbed scene in Uncle Tom’s Cabin
An image of Eva’s deathbed scene in Uncle Tom’s Cabin
Death bed scenes abound in melodrama.

Eventually, I did move beyond this incredibly dire state. Once the lupus started to attack my kidneys, the doctors kicked it into high gear. I was rushed into surgery, I was infused with steroids, and my immune system was rebooted. It took over a year to fully wean me off steroids after this massive infusion but, at the end of it, I was looking at a period of remission. The weird thing about chronic conditions, though, is that they never go away.

I might not be in an active flare, my hair might have grown back up, my joints are more or less working most days, my face’s patchiness has dissipated, and I stopped being on the edge of constantly passing out. That said, any disruption to my immune system (no matter how minor) can produce lupus symptoms again. Not the level that they were at during the flare, no. But, lupus symptoms nonetheless.

For me, this looks like having to rest on the couch all day after a two hour hike that was a bit too strenuous. It’s all of my ribs hurting after not getting enough sleep. It’s my arthritic fingers getting swollen after a long day of typing. It’s a general flu-like feeling of exhaustion whenever I slightly overexert myself. It’s a series of symptoms that prompt me to be constantly vigilant if I want to feel like I can stay strong and do what I need to do each day. To not be embarrassed about my weakness.

As such, I’m constantly on the lookout. Constantly protecting. Constantly trying to sustain my ecosystem. But, as you know, life happens. Shit comes up.

And I hate when shit comes up. It makes me angry. It makes me sick. It robs me of my agency, my power. It takes away my ability to pretend that all is normal, that my life hasn’t changed.

I’m still working through what to do with these emotions: the anger I feel when I have a flare, the sadness I feel when I accept my limits, the guilt I feel for saying no to responsibilities, the awkwardness I feel when I have to tell people I’m sick. The shame I feel when I can’t do as much as I’d like. I’m not quite sure what to do with all of them, but I’m starting to have a hunch.

I think sussing out why it feels so disagreeable to be a victim (and to give voice to that victimhood) emerges as a clear place to start. For me, the question becomes: does admitting to one’s weakness and suffering naturally rob you of your strength, your grit, your durability, your worth? Or, is there a way forward where these things can exist on a spectrum with each other? Where it’s not as simple as women being good or bad, weak or strong, irritating or not, comedic or melodramatic?

Perhaps it is only when I can learn to accept my own “victimhood” and realize that talking about it is not a “bad” thing that I can move beyond the shame and anger that accompanies feeling weak. Not in service of getting sympathy (god, no) but in service of getting more comfortable with who I am and what I feel. And just perhaps, writing about it is the first place to start.

PhD in English with a focus on film/television. Thoughts on lupus/chronic illness, body image, & academic/post-academic life.

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