In my head I’ve always viewed myself as being super upfront and honest about all the challenges I’ve been facing with my health, feelings, and experiences around sex, and as I was filling out a written interview recently about my work in sex education it suddenly occurred to me that, actually, I haven’t been transparent and upfront at all. Being vulnerable is hard, and I have so much internalized ableism that it’s been really difficult to talk about how overwhelming and difficult the last 2 years have felt. A big part of me feels like despite having accomplished a lot, that I’ve also still somehow been failing. I’ve been ashamed to tell anyone about the sexual dysfunction I’ve been experiencing (which I only just now realized I’ve completely avoided writing about it), because some completely irrational part of my brain worries it would undermine me as a sex educator if I was honest about not having much of sex drive or how much anxiety I currently have around sex. And I worry that if I tell anyone how hard things have been they’ll just view it as complaining.
Since a lot of these feelings are based in internalized ableism, let’s talk about it, because I know it plays a huge role in my life and it probably does in yours too. I doubt there’s anyone out there who’s escaped the influence of our society’s ableist views. Ableism is a kind of implicit bias that we learn culturally, and it’s one of those things you have to work at to unlearn. The Invisible Disabilities Project defines ableism as “discrimination or bigotry against people considered disabled by mainstream society,” and there are lots of ways this occurs at a systemic level, in our media and interpersonal interactions, and in the ways that we think about disabled individuals. I know I’ve unknowingly or unintentionally used ableist language or held ableist views, and I’m willing to bet you have too.
Internalized ableism is when you direct all those feelings and beliefs our society holds about disabled people at yourself, but I don’t think you necessarily have to be disabled to experience it. Have you been sick, burnt out, or too exhausted and then mentally berated yourself for not being “productive enough” or have you felt like if you just tried harder you could push through how you’re feeling and get things done? A lot of ableism ties into capitalism as well, for example, have you ever felt like your value as a person is linked to how much you’re able to make or whether you’re able to support your family? Or do you struggle to voice your needs because you don’t want to be a burden to anyone? All of that has a basis in ableism.
I have an epic amount of internalized ableism and a whole lot of anxiety that makes my ableist thoughts really hard to ignore. I’ve blamed a lot of why I’ve been posting less over the last two years on my brain fog, and that’s a big part of it. I say all the time that it feels like 2 years ago someone handed me a new brain and told me to have fun figuring out how it works. I still haven’t quite gotten a handle on driving my new, and often dysfunctional, brain, and it’s something I’m not sure I’ll ever fully get used to. Like the rest of you, I had a bunch of insecurities growing up, but my intelligence was always a big source of confidence for me until I developed brain fog.
I haven’t really lost that part of me technically, but I now have a particularly hard time focusing, the wrong words often come out of my mouth when I talk, I lose my train of thought constantly, and I have a difficult time recalling memories and information I’ve read or learned. All those things plus internalized ableism and a hefty dose of anxiety has basically left me afraid that anything I say or write will make me sound like I have no idea what I’m talking about.
A big part of why I’ve had such a hard time focusing is because of how overwhelming internalized ableism can be. Up until about 2 years ago, I had a well-paid job as a graphic designer and I made enough money to support myself. I left my last full-time design position because I was discriminated against for being chronically ill (I’ll have to share more about this another time, it’s a hell of a story). It was the second job I’d been essentially chased out of because of my disability (the first involved co-workers poisoning the well about me after asking someone to not wear perfume to work), so I decided that going forward I’d be my own boss.
Shortly after leaving that last full-time position, I had a bad reaction to a medication and it resulted in a chronic illness flare up that’s lasted the better part of the last two years. Suddenly building my own graphic design company while also building my sex educator career went from the slightly unrealistic goal of a total overachiever to being completely impossible. In fact, even basic things like holding a conversation and not forgetting what we were talking about or going grocery shopping felt impossible. And instead of recognizing how hard I was working and all the things I still managed to accomplish, the only thing I’ve been able to see is what I wasn’t achieving.
I couldn’t figure out why I couldn’t just try harder. Some days I still feel that way. Everyone else seems to be able to accomplish everything, so why couldn’t I? I think sometimes that’s the tricky part of having an invisible disability—it’s not just that other people that can’t see my disabilities, I can’t see them either.
Despite having several medical conditions that can make things challenging, I often find myself wondering “what the fuck is wrong with me” because I forget that, well, there’s actually a whole list. Honestly, there’s a lot of ways that an invisible disability is its own special type of mind fuck, but I think for me the biggest one is that often people don’t believe that my chronic illness is as difficult to manage as it is or that I’m just making it up, which makes it even easier to for me to invalidate my own experiences.
The fact that I know some people, even in my extended family, don’t believe I’m sick or disabled makes me worry that if I don’t have some tangible indication of productiveness or success to show for my time everyone will think I’m lazy. Actually, even if do believe I’m disabled, I still worry they’ll think I’m lazy. I think this is a concern for a lot of disabled folks have, even though many of us know that laziness doesn’t exist (click that link, it’s a really good article written by Devon Price).
I’ve been so afraid of people thinking I’m lazy, of my disappointing the people in my life, or feeling like a burden to them that I’ve been running myself ragged. I don’t take breaks when I know I need them and end up forcing myself to sit at a computer for HOURS trying to accomplish something I’m too sick to do because I believe I should be able to “push through it.” Since stress can be a trigger for the allergic reactions my Mastocytosis causes, I’m pretty sure I’m not doing myself any favors. As a capitalist society, we don’t teach people that they’re still valuable even if they aren’t productive or financially successful, and I didn’t realize how much my self-worth was tied into my abilities until my chronic illness impacted what those abilities were.
Being chronically ill and/or disabled means facing a lot of challenges, but some of the worst ones come from our own brains. We live in a society where no matter what the reason for something is, or how valid that reason, explaining why you’re unable to do something is still viewed as an excuse. What’s worse is that for millennials we’ve been dragged into this culture where you’re supposed to never stop hustling, where it’s become cool to work obsessively, and if you stop when you’re tired, exhausted, or sick, it’s because you don’t want to succeed badly enough. It’s ableist as fuck, but that’s a soapbox for another time.
Moving forward, my goal is to be more transparent and maybe stop worrying so much about whether or not everything I create is perfect enough to share with the world. I’m going to try to stop worrying constantly about whether or I’m going to say the wrong thing, because, like all other humans, I’m definitely going to fuck up. Be kind, to both yourselves and to me and take care of yourself—I’m going to try to do the same.