If you’re like most people, you turn in to the Devil when you’re sick. You re-polish and re-purpose all your favourite curse words and manners are a thing used only by the healthy. A simple “Please, could you just,” turns easily into a “Fuck you, can’t you see I’m dying here?”. Your usual brand of “Oh ya know, same shit different day,” becomes, “Death, imminent.”
In more graceful terms, Emily Dickinson wrote of the state of pain, saying:
“Pain has an element of blank;
It cannot recollect
When it began, or if there were
A day when it was not.
It has no future but itself,
Its infinite realms contain
Its past, enlightened to perceive
New periods of pain.”
In short, pain fucks you up, steals your judgement and predictions, only promising more pain. This can really screw with a person, and when you sprinkle disability atop pain and illness, well, you know where this is going.
A major struggle with needing help when you’re disabled and sick is that it usually adds to the long list of things you need when you’re healthy. These added needs effect both the caregiver(s) and the PwD, as imagined:
“Hey mom, I need to roll over again. And also, throw up.”
“Hey kid. I love you, but I’m sprouting grays faster than Jack and I haven’t showered in four days”.
“Oh. Well. In that case, I’ll just swallow it back down.”
Basically, it’s hard on both parties, and usually both parties realize it. This means the caregiver is tired and burnt out and the PwD is acutely aware, once again, of their dependencies. It seems somewhat natural when the caregiver throws their own personal care out the window for the sake of their child, and the PwD throws some of their needs under the rug too. And everything goes to shit, really fast.
Another issue is that disability often crosses over into the realm of illness, and the two can be mistaken for related, even when they are separate. This is most overtly seen in hospitals, where doctors and nurses are often overbooked and understaffed. This misconception can go either way, making all of a disabled person’s symptoms about their disability, or leaving it out of the equation entirely. It’s a human flaw, to compartmentalize things in the most digestible way possible, but it often causes professionals to be dismissive or over-looking in the medical setting:
“Well yes, these symptoms are common with someone of your disability.”
This phrase, heard over and over by many people with disabilities, is something that instantly tells the disabled person, “This is your sentence, and I’m not working to change it.”
This train of thought—that certain ailments are common with certain disabilities, may hold all the truth in the world, but they also hold a bunch of sneaky expectations:
- The expectation that, since you’re disabled, you knew this was going to happen.
- The expectation that you know how to cope with said information. (Go on, just pull out your book on how to be disabled and ok with it.)
- The expectation that you’re ok with giving up, have no desire to look into alternative options, and are ready to throw in the towel.
It also separates the medical professional from the PwD, intentionally or not. This separation happens the minute the PwD is told, “Well, someone with your condition will likely..”. It is not done on purpose, and may be done with good intent (defining risk, preparing people for future challenges), but it is still a category nonetheless; A lump of people grouped together because they are likely to experience similar health difficulties. It puts the disabled person in a league of their own, dealing with a life of their own…and I could write a whole other post on how creating space, “othering” destroys empathy, which ultimately, steps all over compassion.
As with the other posts on the effects of asking for help for PWD, this one points to the ways in which disabled people end up shoving their asks under the rug. It’s kind of all over the place, but the point remains that sickness “ups” level of need (just ask any grown ass adult who asks their parent for soup), and disability can make us swallow our needs in silence, in both home and medical settings. Both situations can be overwhelming, and both are relatively difficult to solve without more resources and a paradigm shift in some of core beliefs about disability. Sadly, this blog doesn’t have answers, only hopes to shed light and provoke questions. It is however, one of the reasons I think there should be counselors who work specifically with people with disabilities, the same way there are counselors for people with mood disorders, women who have been mistreated and survivors of war. Disability is an entity on its own, sometimes.