disability

Disability Impostor Syndrome Fucking Sucks

Kate Sloan
I don’t know what’s going on in this picture, but I’m holding a spoon, so it seemed relevant.

This has been one of those chronic-illness weeks when I felt legitimately sick, legitimately disabled. It’s nice, in a way, to be able to banish the voices of impostor syndrome from my brain, if just because the rest of me is throbbing with pain. (Hey, that rhymed.)

I powered through that impostor syndrome in so many ways this week. I made accommodations and adjustments for my illness. I took Wednesday off work – a “Weekend Wednesday,” as CGP Grey would say – and mostly just laid in bed trying to breathe through the pain, distracting myself (sometimes well, sometimes not-so-well) with books and video games. I got as much sleep as I could, drank as much water as I could. I laid out my schedule for the week in such a way that I only ever had a maximum of two commitments per day, two “things” involving interacting with other humans, because this involves suppressing the visible signs of my pain and fatigue and is thus, in itself, exhausting.

I bought a cane.

There is a scene in the 1993 TV movie To Dance with the White Dog, a movie my mom and I have inexplicably watched together at least a dozen times, where the protagonist – an old man named Sam – finds that his physical condition has worsened to the point where he needs a mobility aid. One of his sons brings him a walker, and at first he refuses to use it, remarking petulantly that it’ll make him look like “a poor old man.”

I thought about this scene this week when I was limping around my apartment, needing to rest every few steps because of the reasonless pain stabbing through my knee. I’d considered buying a cane in the past for days like these, but I knew it would make me “look disabled,” and somehow I felt like I wasn’t “disabled enough” to deserve or warrant “looking disabled.” It was all too similar to how, when I was 15 and had just realized I was sometimes attracted to women (though still mostly attracted to men), I felt weird about wearing rainbows and bi pride flags on my person, because I worried I’d be misleading people somehow. By what? Flagging as queer when I am literally queer? How ridiculous.

It’s the same principle. If a cane would make it even 10% easier or more comfortable for me to get around, why not use one? Why not see if it could help more than 10%, even?

Would people see me on the subway or streetcar and ask me why I need a cane when I’m young and my body has no visible, structural issues? Would I then have to explain that I have a chronic pain disorder with no symptoms that are actually observable or provable from the outside, and that I don’t even have an official diagnosis? Or would I be filled with such rage and indignation that I’d have to limp off the vehicle to catch my breath and angry-cry in a subway station?

I started reading about disabled femmes-and-femme-adjacent-people who use canes. Gorgeous movie star Selma Blair has multiple sclerosis and walks with a cane. Canadian sex educator Kaleigh Trace was injured as a child and uses two canes. Local legend Claire AH, whose storytelling and matchmaking skills are unparalleled, walks with a cane after having some strokes a few years back. Witchy zinester Maranda Elizabeth uses (and writes thoughtfully about) using a cane. There is plenty of inspiration out there to be found.

As I flipped through FashionableCanes.com – what a website! – I found myself, again, wondering if I was just being dramatic, exaggerating my own symptoms to myself, even as a heating pad encased my throbbing knee and I popped yet another naproxen for the grinding pain in my hipbones, ankles, and elbows. I considered a cane of clear lucite, but determined its near-invisibility could be a drawback for a disability that’s already so frustratingly invisible. I contemplated stately wooden canes, the likes of which might’ve been carried by a well-to-do gentleman in Victorian England, but just didn’t think I could pull off something so sophisticated. Eventually I settled on a blue wood one with an ornate chrome-plated handle. It’s classic but a little flashy. It felt like “me,” or at least like the closest thing to “me” I could find while shopping for a product I still wasn’t convinced I really needed or deserved.

I had a phone call with my doctor booked for Friday morning, during which I planned to ask her to refer me to a local chronic pain clinic. My doctor, notoriously, is not great about my pain; she never seems to take it very seriously, and the sheer fact that I’ve been complaining to her about it fairly regularly for over 6 years and have not even received a definitive diagnosis speaks volumes. The night before the appointment, my partner Matt said, haltingly, “I have a proposal for you… and please feel free to say no if you want to… but I think we should do some medical roleplay so you can practice what you’re going to say to your doctor tomorrow.” A tear immediately slid down my cheek. My wonderful spouse knew that advocating for myself is not my strong suit, especially in medical situations, in large part because of the very impostor syndrome this entire post is about. It’s difficult to make the case that you deserve a diagnosis and a treatment plan when you don’t actually, 100% believe that you do.

So we roleplayed. Matt pretended to be my doctor and asked, “Are you sure you need to be referred to this clinic?” and “Why now?” and “Is your pain really that bad?” I struggled through my deep self-doubt and self-loathing to answer: “Yes.” “My condition is worse than ever and I need help.” “My entire body hurts, at a minimum 4-out-of-10 intensity (and usually higher), every single day of my life, so yes, it is really that bad.”

I found myself responding to these questions almost as if I was answering on behalf of someone else, someone whose pain I had no doubts about, whose struggle I knew for a fact was real, whose quality of life I felt should be better. I was able to tap into a rare sense of authenticity and deservingness. It was almost as if placing the order for the cane had cleared some cobwebs in my mind, enabled me for the first time to truly, deeply understand that I am actually disabled – however invisibly – and I deserve to have that acknowledged and addressed by the people whose literal job it is to acknowledge and address it.

So the next morning, when my doctor predictably said, “Are you sure you need to be referred to this clinic?” and “How bad is your pain, really?” I was prepared.

“I have done the research and I believe this clinic is the best option,” I replied, calmly, coolly. “It is not acceptable to me that I’ve lived with daily chronic pain for the past 6 years, and I’d like to seek a diagnosis and treatment.”

She filled out the referral form while I stayed on the phone. “Where is the pain located?” she asked, when that question came up on the form, and I replied, with total confidence (because it was true), “All over my entire body.” She did not argue with me. She did not dismiss me. She just filled out the damn form.

In every area of my life where I have experienced impostor syndrome – my queerness, my kinkiness, my success as a writer, and my disability – I have found that believing fully in my own legitimacy is often the first step to getting other people to see me as legitimate. It is unfortunate that this is the case, but it is useful to know. As soon as I firm up my convictions and declare to the world that I really am the thing that I really am (what a concept!), they tend to believe me. I know I’m blessed and privileged in this way, and that this unfortunately isn’t the case for everyone: racial healthcare disparities, trans healthcare gatekeeping, and other injustices still run rampant. But if my confidence in my own labels can convince even the occasional person that they are legitimate, that confidence is worth cultivating.

I have a feeling that the day I show up for my first appointment at the new chronic pain clinic, my new cane gleaming in my hand, I will feel like an utterly new woman – a woman who is unapologetically, unreservedly, and undoubtedly herself, disability and all.

Rest is Crucial, Sacred, & Sexy

Kate Sloan

I recently quit my part-time social media job after 4 years of working there. I’ve long called this gig my “dayjob” because it did the thing for me that dayjobs do for creative types: it gave me a steady, reliable income that tethered me to the working world and afforded me the time, money, and brainspace to do my passion projects on the side. But in recent months, my “dayjob” had begun to bring in only about 7% of my total income, while taking up about a quarter of my working hours – and with book deadlines and health issues weighing heavily on me, I decided it was time to move on.

This was a challenging decision for me, in no small part because I have loved working at that company and with the people there, albeit remotely, these past 4 years. I had other resistances to leaving, though, and spent a whole hour discussing them with my therapist recently. I worried that my other projects would dry up, leaving me regretful to have quit – although there’s no evidence that will happen. I worried that without time-sensitive morning tasks to complete each weekday, I’d let my depression get the better of me, lazing about in bed into the afternoon. I worried that firm daily deadlines were the glue holding my life together, and that without them, I’d lack the conviction and self-direction to manage my time effectively.

But as my therapist reminded me, this is internalized ableism, internalized capitalism. The discourse around “laziness” is too often aimed at people whose systemic struggles and marginalizations are framed as personal failures. The freelancer community’s obsession with “hustling” is borne of capitalistic imperatives. A person’s “hustle,” or lack thereof, says nothing about their inherent value as a human being. Not all people have the same abilities; we can’t all hustle as hard as we think we “should.”

It feels shameful to admit that one of the reasons I quit my job was so I could rest more. I feel like I already rest a great deal, certainly more than my friends who work long hours at cafés or retail stores. But this mindset comes from holding myself to able-bodied standards despite being increasingly, invisibly disabled. My chronic pain and chronic fatigue are worse and more frequent than they’ve ever been. I often need a 3-hour nap just to get through the day, or to “catch up on sleep” into the luxuriant afternoon hours on weekends. The simple fact of living in a pain-wracked body is uniquely exhausting. I can’t pretend that away.

I have to banish culture-borne ideas of “laziness” in order to plan a schedule that actually works for my body and my brain. Now that I’ll soon be fully self-employed, with most of my deadlines being self-imposed or flexible, I can rearrange my schedule as needed to fit with my lifestyle and desires – something I’ve longed for my entire adult life. I’ve been fantasizing about “Weekend Wednesdays” and impromptu staycations and “the 4-hour work week.” It feels blissful, in the truest possible sense of that word, to envision the freedom my self-employment will now afford. And I know it is an enormous privilege, one that comes from my position in society as an educated white person as well as my many years of hard work to establish this lifestyle for myself. But I can’t shake the feeling that it’s wrong somehow to rest as much as I do, or as much as I want to. That I “should” work more, to “earn” the happiness I get from having a career that genuinely delights me.

My therapist told me, “You’re working as much as you comfortably can, and you’re earning enough money to live on. That’s all that matters here.” I felt my body relax when she said this. It’s so wild that capitalism instills in us, from birth, the belief that our work, our productivity, and our output are what define our value as human beings. Even sworn anti-capitalists sometimes still struggle to unlearn this. It’s as if we’ve forgotten that “jobs” and “careers,” as they are defined in modern times, did not always exist and do not need to exist. If human didn’t need to work in order to survive, what would we do instead? Would we make art, socialize, have sex, eat, drink, sleep, think? Would we feel fulfilled then? Would we feel we had done “enough” at the end of each day?

It’s impossible to say. But I’m working on accepting that my rest time is every bit as valid and important as my work time. When my achy, sleepy body demands a 1 p.m. nap, I need not admonish it or deny it. When my inner child pipes up to say that Wednesdays should be days off for playing in the sunshine, I can and should listen. When all I want, at a bone-deep level, is to stay in bed all day playing Pokémon games and listening to comedy podcasts, that’s likely a signal I should heed. This feels sinful and embarrassing to even type out. But that’s because it’s a new belief system for me, one that butts up against bullshit I’ve been inundated with my whole life.

We need rest to survive. That’s especially true for disabled folks. I feel no sensuality and sexiness in my body when my nose is constantly pressed to the grindstone. I get precious little joy from life when my every waking minute is mired in work and worry. I have no time or energy left over for the fun things, or even the necessary things, when work swallows me whole.

Rest is crucial. Not all of us have the ability, or the privilege, to honor that fact and live it out fully. But don’t let anyone tell you it’s not. You deserve the rest you need – and the rest you want.

On Being a Chronically Ill Writer

Kate Sloan

My daily routine is more affected by my chronic illness than I’d like to admit. Work can’t start until I manage to forge a path through my fatigue with the requisite amount of coffee and good music; task-switching and location-switching are informed by which positions my body can tolerate that day and which it refuses to; and when my pain decides that the work day has ended, I usually have to listen.

It’s – to say the least – a bummer, especially since I used to be renowned among my friend group and my online communities for my productivity as a writer. The same impulses still come up as before, the ones that pushed me toward creativity and stamina and long sore-eyed hours in front of the computer, but my body cannot enact my mind’s wishes on most days now and it makes me feel like a failure. Like I’m failing not only myself but also all the people who taught me how to write and all the people who believe (or believed) in me as a writer.

I seem to come back to Esmé Wang’s blog The Unexpected Shape over and over again as I wade deeper into the chronic illness life. Esmé is one of my favorite writers, and – like me – she deals with pain and fatigue (among numerous other symptoms) as part of her daily life. She’s written a lot about “creating a healthy writing practice when your health doesn’t want to cooperate,” and I’ve found her suggestions helpful, so here are some of mine, incase they can help anybody else.

I keep a to-do list almost every day, which boils down my most pressing tasks to an easily digestible form. The desire to tick those boxes and complete the list is sometimes stronger than the downward gravitational pull of my body’s limitations. When there’s only one more thing left to do on the list, usually that fact alone is enough to get me to roll up my sleeves and work on it – even if, by that point, I have to go very slowly and take many breaks.

I have a padded lap desk that I use when I’m in bed, to hold my laptop steady and keep it from overheating on the duvet, or burning my skin (temperature sensitivity is sometimes a symptom of mine). However, depending on where my pain is manifesting on any particular day, it may not always be possible to comfortably work in bed – so I move around, from the bed to the couch to the desk to the chair, looking for a few minutes of relief in which I can type a few hundred words or answer a few emails.

On days when my body is rebelling so much that even sitting at my computer feels exhausting and unfeasible, I’ll use the Notes app on my phone, which syncs to my other devices so I can easily copy and paste the text to where it needs to go later when I’m able to. I haven’t needed dictation software as of yet – the way I write and edit is exacting and particular in such a way that I get frustrated at the very thought of not being able to see what I’m writing as I write it – but am keeping it in mind for if/when my level of debilitation progresses enough to make it necessary. On especially bad days, sometimes I’ll write in longhand (I like Blackwing pencils and Moleskine notebooks; they make this process feel glamorous and easy) and then type up the words when I can.

I rely a lot on pre-scheduling. This was always true, due to the way the hypomanic episodes of my early 20s made me want to write, write, write on certain days while depression kept me uselessly crying in bed on other days. Now, I’m more aware than ever that any day – or even hour – when I feel capable of working is worth taking advantage of, if I can. Doesn’t matter if a blog post won’t be published until Thursday; one motivated and limber-fingered hour on Tuesday might be the right time to get it done. I try, as much as I can, not to leave writing tasks until the last minute before the deadline, because I can’t control what my body will be doing at that time.

I take naps as needed, which I’m fortunate to usually be able to do, due to my freelancer lifestyle. A good eye mask is a must-have for mid-day naps. My body pillow helps keep me comfortable while I’m resting. I use the Clock app on my phone to set timers/alarms so I don’t nap the whole day away.

I have a cheap microwaveable heating pad with Velcro straps that can be positioned on sore body parts as needed. I want to amass a collection of these so I don’t have to choose between treating multiple sore body parts on especially bad pain days.

Comfortable clothing is crucial, especially since my fibromyalgia-esque chronic illness sometimes causes flare-ups of hypersensitivity to scratchy or restrictive garments. I like extra-soft tri-blend T-shirts, MeUndies modal underwear and lounge pants, and (when I’m feeling a bit fancier) modal slip dresses and vintage silk robes. I particularly like loungewear that can be re-styled in an outdoors-appropriate way incase I need to dash out for a coffee or some groceries.

I’ve started using a pain tracking app to keep records of my pain’s intensity, locations, triggers, and treatments. I like this one because it’s super customizable; I can, for example, add “orgasms” as an option in the treatments category, or track my anxiety levels alongside my pain levels to see if they match up, or input impending menstruation as a potential trigger.

I’ll sometimes take a mid-day bath when my pain is especially bad, because I find the hot water gives me some relief for a while. Epsom salts are supposedly good for pain relief because of their magnesium content. Some people write in the bath; I haven’t yet figured out a way to do this that feels safe and sustainable for me, since I don’t want to get electronics close to the water and I worry about dropping my notebook into the tub. Maybe one of those wooden bathtub trays is in my future. For now, if I need to continue working while in the bath, I usually use it as reading/research time – my Kindle Oasis is waterproof and I can load it up with PDFs of my choosing, like scientific studies I intend to cite in an article or books I’m assigned to review.

Finally, one of my greatest tools in the fight against pain is cannabis – which, fortunately, is legal where I live. (By the way, why the fuck hasn’t Canada pardoned and freed everyone who is incarcerated on cannabis-related grounds? It’s bullshit with hugely racist motivations and manifestations. Anyway…) Usually weed makes me too spacey/giggly to work properly, so I mostly leave it until the end of the day when all my work is done, but sometimes my pain is bad enough that I need to treat it in order to focus on any task. In that case I’ll try to pick a strain high in CBD and low in THC, use it sparingly, and schedule my day so that I’m doing highly methodical or highly creative tasks while high – never anything requiring a lot of logical analysis or careful phrasing.

That’s what’s working for me right now. I’d love to hear from other chronically ill writers in the comments (or in your own blog posts, if you prefer – send me a link please!) about how they manage their symptoms and get their work done.

 

Additional resources I’ve found helpful on this topic:

15 Sex Toys For When Your Hands Hurt

Kate Sloan

My hands hurt most days lately. It’s one of the many manifestations of my as-yet-undiagnosed chronic pain disorder, and a particularly annoying one, given that I type words for a living. Fun!

However, in better news, I have noticed that the sex toy industry is (slowly, slightly) starting to become more inclusive of folks with chronic pain and other disabilities. Here are some toys I think could be useful if you, like me, struggle with pain, inflexibility, and/or weakness in your hands…

The Fun Factory BeOne is a bullet-sized vibrator that fits comfortably between two fingers, so you don’t have to grip it with your sore hands. The tip curves comfortably into the clitoris without much effort or angling required. I wish the motor was rumblier, and that the button for changing speeds was placed more conveniently (I can’t hit it without temporarily changing my finger placement, which disrupts flow sometimes), but I’m glad vibes like this exist. Along similar lines, you could also try “finger vibes” like the Jopen Key.

I recently got my hands on a Tenga SVR, a small vibrator attached to a silicone loop. You can use this contraption as a cock ring that offers external stimulation for the clitoris or perineum during penetrative sex, or you can use the vibrator clitorally while the loop is wrapped around two or three of your fingers. This gives a little extra grip and stability, which I find useful when hand pain is flaring up. This vibe is also great for finger-banging, an idea I first found out about from Kevin Patterson: you can slip your fingers through the loop and then slide them inside your partner, and the vibrator portion of the toy will stimulate them externally. Neat! (The LoveLife Rev looks to be a similar type of vibe, though I can’t attest to how it holds up against the SVR’s motor, which is wonderfully rumbly and strong.)

The new We-Vibe Wand has a feature called SmartSilence that a lot of reviewers have hated, but that could be useful for folks with pain or strength issues in their hands. The feature causes the toy’s vibrations to “pause” when you remove the toy from your body, and resume once you bring it back into contact with your skin. While I can understand why some people find this aggravating, it might be useful for those moments when you need to re-lube a dildo, adjust the vibration speed, take a drink of water, answer a text, etc. but don’t want to expend precious hand function on pressing finicky buttons. Just lift the vibe away from your body and go do what you gotta do.

While I’m talking about We-Vibe… Hands-free vibrators like the We-Vibe Sync (read my full review here) are a godsend on bad pain days. I like this one in particular because you can adjust the two hinges so that the toy applies your ideal amount of pressure to both your clit and your G-spot. You can control the Bluetooth-enabled toy with an app on your phone, which I definitely find less physically taxing than pressing buttons.

Another new, potentially helpful product from this savvy company is the We-Vibe Chorus. It’s very similar to the Sync in shape and motor quality, but it uses a technology called AnkorLink that’s supposed to be more reliable than Bluetooth (so less tinkering required), and its accompanying remote optionally lets you control the vibrations by squeezing it: harder squeezes = stronger vibrations. Depending on how your hand pain manifests, this might be easier for you than pushing buttons or operating an app.

Pulsators, in general, are a lovely option for chronic-pain sufferers, because (as long as you brace yours against something like a pillow between your legs) you can get “fucked” without the exertion of manual thrusting. My current favorite is the Fun Factory Stronic G (read my review here), though if you’d like some rumbly clitoral or perineal vibration alongside your pulsation, the Bi Stronic Fusion is also terrific.

On bad pain days, I prefer vibrators with dials over those with buttons, as I find them easier to operate. The CalExotics Turbo Glider (read my review here) is a classic, and – while it lacks the bells and whistles of many other vibes I’ve mentioned here – it holds up, despite how long it’s been around. And it costs less than $20! If you don’t mind spending more to get more power, many BodyWand models also have dials instead of buttons.

If you have a prostate and like to have it stimulated, some of the best hands-free options for that are Aneros prostate massagers. They’re designed to rock back and forth against your spot when you squeeze and relax your muscles. Some people can even have orgasms from this alone!

As for penile stimulation, some kind of vibrator is probably your best bet if your hands hurt – it won’t require as much (or any) squeezing and stroking; you can just hold it on your shaft and/or against your frenulum and it’ll do the work for you. These toys even work without an erection in many cases. Two of the most popular and high-quality options on the market right now are the Fun Factory Cobra Libre II and the Hot Octopuss Pulse Solo Lux. (The latter can even be controlled with a wristwatch-like remote, for added ease of use.)

Finally, I would be remiss not to mention the Liberator Jaz, a compact sexual positioning aid made of firm foam covered in soft, washable microsuede. (Read my full review here.) Sometimes my hand and arm pain is so bad that it hurts even to reach all the way down to my genitals unaided; the Jaz tilts my hips toward me, not a lot, but enough that it’s not so much of a strain to touch my own junk. I’ve had mine for years and I still adore it.

What sex toys do you turn to when your hands are achy?

Links & Hijinks: Soaking, Rimming, & Writing

Kate Sloan

• Here’s why people have more sex in summer.

• Interesting: sex researchers have less sex than everyone else.

• Paying for porn is the feminist way to get off. Hear hear!

• “There are two things I love eating: steak, and ass.” This piece on rimjobs is a delight.

• This as-told-to on the Mormon sex act of “soaking” (“No thrusting, no grinding, no climax. Just pop it in, and hold the fuck still”) is hilarious and fascinating. “There was always squirming on both of our parts but never any real thrusts. I guess squirming is technically moving, but it’s not like her preacher was reffing the event.”

• Useful tips for freelancers who work at home. (I am feeling this struggle harrrd lately!)

• On that note: freelancing can take a toll on your mental health.

• I’m a little tired of reading about sex robots, because I just don’t think they’re going to be the futuristic epidemic everyone claims they will be. But here’s an interesting piece about RealDolls.

• You know, I rarely link to erotica in these round-ups, but this brief tale about orgasm denial made me all tingly, so there you go.

• Maria Yagoda wonders: is period sex okay for a first-time hook-up? “As punishment for not menstruating, people who don’t should occasionally have to deal with some of the inconveniences of blood, blood everywhere. For this reason, period sex can seem like a feminist act, as it defies the societal expectation of women to hide, or be ashamed of, this awful fucking thing.”

• Sugarcunt has some great advice on writing sex toy reviews.

• Here’s a beginner’s guide to keeping a journal.

• “Unusual” sexual desires are more common than we previously thought. Hmm!

• Emmeline reviewed an inflatable swan phallus we tried at Woodhull and it’s the funniest sex toy review I’ve read in ages.

• Dating while depressed is difficult but doable.

• Mired in writer’s block? Alex Franzen has some topic suggestions for you.

• Brandon Taylor is such a beautiful writer. “There is a way in which people talk about domestic writing or personal writing that does not set itself on fire—they call it quiet. They call it still. They call it muted. As if there were anything quiet about relationships that go awry.”

• Date ideas for stoners. The OkCupid blog has gotten weird and I’m into it.

• “Porny sex” is still valid sex. You’re not a “bad feminist” if you enjoy things like pussy-slapping, “degrading” D/s, and messy blowjobs.

• Gosh, I adore the way Girl on the Net writes about sex. Her Ambit dildo review is wonderful: “I don’t want him to fuck me with this in a playful way or a quick way. I want to catch him when he’s in this focused mode: when he’ll not just use it to warm me up for a fuck, but really settle into the act of fucking me with it. Laying it out on the bed like he’s a surgeon aligning his equipment, then ordering me to strip off my knickers and lie still.”

• We need to stop supporting and protecting abusive men.

• Taryn busted some myths about asexuality.

• We don’t talk about dental dams enough, and it’s emblematic of a bigger problem.

• [Content warning for ableism.] Some people have a fetish for becoming disabled and go to great lengths to fulfill that fantasy. Apparently it may even have a legitimate neurological cause. Uh, wow…