Being Disabled Is a Full-Time Job

Content/trigger warning: emetophobia, discussion of medical ableism and fatmisia, suicide, psych meds

Being Disabled means putting up with a truly unfathomable amount of bullshit, either from society, from your own bodymind, or both. (Note that I say “bodymind” because I have always thought separating the two was silly, and Disabled Twitter has provided me with a word that gets the connection between the two across.) Obviously the specific type of bullshit varies depending on a person’s disabilities, and I can’t speak for the entire Disabled community, but just for an example, I will go over a typical pre-pandemic day for me to demonstrate just how much work being Disabled is on a quotidian basis.

-I wake up. It takes me multiple alarms to get up because of my hypersomnia. I debate skipping work to sleep til 3 PM, but I’m too afraid of losing my job to do that, so I get up. I’m already exhausted.

-I take my antacid for my hiatal hernia-induced GERD and set an alarm for half an hour. I need coffee to function because of my hypersomnia, but if I drink it before the antacid has kicked in, I will be vomiting uncontrollably for hours. I make my coffee and put it in a travel mug for when the alarm goes off.

-I get dressed. I avoid looking at reflective surfaces because seeing my reflection when I’m particularly or fully undressed gives me horrible body dysmorphia. If my clothes are too tight, I also get body dysmorphia and have to change.

-I commute to work. My anxiety is so bad I can’t drive, so I don’t own a car; I take the El. I have to wear ear defenders or listen to music in order to deal with the noise from the other commuters. If I have to be squished in close with other commuters because the train is crowded, that puts me at risk of having a meltdown.

-I drink my coffee. Ahhhh. I use the coffee to wash down my psych meds.

-I arrive at work. The overly friendly security guard tries to make conversation. I try to reply with “small talk” even though it’s costing me dearly fuel-wise to try to figure out socially appropriate things to say.

-Morning meetings should help me plan my day, but I can’t focus during them. Sudden tasks come up without warning, putting me at risk of having a meltdown.

-I have so many meetings over the course of the day. I wish I could skip them to just do my actual fucking job, because I can’t focus during meetings anyway, but I can’t. Meetings also force me to engage in more small talk, which is exhausting and difficult.

-If I am having a bad brain day, especially if I forgot to take my meds, I have to talk myself out of leaving the office and walking into traffic. I first experienced suicidal ideation as a child, and my brain has spent so many years telling me that I want/deserve to die that I still experience those thoughts pretty regularly. I also have to talk myself into eating/convince myself that I deserve food, especially if I have had the misfortune of seeing my reflection that day.

-I also probably spend some of the day dissociated, and if I get startled or otherwise experience a trigger for one of my trauma-related disorders, I have to spend energy dealing with flashbacks or one of my protector alters trying to fuck shit up.

-I commute home. It’s pretty much the same as my commute to work, except I’m even more exhausted now and as such at higher risk of having a meltdown.

-I get home. I reheat some leftovers and maybe take a shower. Showering isn’t hard for me–I love showers–but I’m one of the few Disabled people I know who has an easy time with showering/bathing.

-I spend time with my wife and cat, then I fall asleep. I have to get at least 11-12 hours of sleep to be able to function the next day because my life is so exhausting.

See what I mean? That’s a lot of shit to deal with that wouldn’t even be on my radar if I were abled. Notice that I didn’t even include any chores like cooking, cleaning, or taking out the trash; that’s because I almost never have the fuel to do chores after such a long-ass day. This is why I’m always behind on chores.

And don’t get me started on all the shit I have to do in order to keep my health in its partially functional state. Actually, yes, get me started, because that’s what I’m writing about. I don’t have a PCP because I’m broke and scared of medical fatmisia and I don’t see enough specialists because I’m broke and can’t do phones…but if I were on top of my shit, I would be regularly seeing a PCP, a sleep specialist, and a GI specialist. As it is, I see a therapist and a psychiatrist, both of which require a ton of time, energy, and money. (Especially therapy; that shit is work, some of which needs to be done outside of my therapy sessions.) Staying on top of refilling my psych meds also takes time and money. If I did see all the specialists I should be seeing, I’d practically need a damn secretary to make all my appointments for me, if only because my Autisticness means I can rarely handle phone calls.

Also, when you’re Disabled, doctors often don’t know how to deal with you. A lot of Disabled people are fat and tend to get told “just lose weight” when we have health complaints. Not to mention if I did a Twitter poll of the chronically ill community asking if they had to explain their own illnesses to their doctors, I’d bet the poll would come back with an overabundance of “yes” answers, especially among people with “rare” (read: underdiagnosed) illnesses. When doctors don’t know our condition/s well, that means we have to do research. That’s a lot of time and energy spent on work that shouldn’t be our responsibility, but doctors rarely can admit when they don’t know things, and doing research is often key to Disabled patients’ being able to advocate for ourselves when our #DoctorsAreDickheads (thanks to Stevie Boebi for the hashtag).

There’s also the issue of medication. I’m lucky enough that I only take a few pills in the morning (and I also have an anxiety med to take as needed). Many Disabled people have delicate and complicated medication schedules that they have to keep track of. Sometimes this can involve going into a doctor’s office for a treatment; sometimes it involves having a pill reminder. Remembering to take medication and taking it can be a huge part of a Disabled person’s day.

I also want to emphasize that anyone who says “Well, just get on disability if being Disabled is a full-time job” is a towering pile of ableist shit-garbage at worst and ignorant at best. In many states, the percentage of people who apply for SSI or SSDI and get it is in the fucking twenties, and if you are approved, the process takes years and is extremely difficult, humiliating, and inaccessible.

I think that’s all I have for now. Thanks to my Patreon supporters: Ace, Hannah, Emily, Mackenzie, Sara, and Sydney! To be as cool as them, it’s only $1 a month to see blog entries two days early and to vote in polls to help me choose what topics to blog about.

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