I am what they call ‘a noncompliant patient.’ This is the term that gets used to refer to patients who do not ‘adhere’ to treatment regimens. This is often presented in a way designed to suggest that the patient is willfully misbehaving, or doesn’t realise how important it is to follow treatment recommendations. In actual fact, of course, the situation is more complicated, and labeling patients as ‘noncompliant’ and essentially writing them off is not actually the best way to resolve issues related to ‘compliance.’
There are a lot of obstacles to ‘compliance.’ There’s the fact that treatment regimens are expensive, which makes it hard to stay on them. Would I prefer to take my medications consistently? I most certainly would, but it’s not always an option; I have to look at the choices I have, the needs for a given period of time, and the available funds, and make some tough decisions. Sometimes that means tapering off my medications so I can be assured that I will be able to pay the rent. Sometimes that means dropping a medication altogether because I just can’t afford it in a given month. I know this harms me. I don’t need to be lectured about it, thanks, I’m already well aware. That doesn’t change the fact that it still has to happen.
I am not the only person who does this, I am not the only person who weighs unpleasant decisions. Some people die because they can’t access the treatments they need. Not because they are noncompliant. They would love nothing better than to be compliant. Because they have no choice.
There’s also the issue of sticking to a schedule, encountered by some people I know. Personally, I have a very clear and regimented schedule, and it’s not too challenging for me to adhere to it, but that’s not a trait everyone has. Other people are extremely busy or have trouble tracking days and times and it’s hard for them to take medications on a schedule, to do exercises, or to follow any other treatment recommendations. Sure, sometimes it’s possible to set reminders of some kind. Sometimes it’s not. Sometimes, the reminder goes off and you don’t notice it, or you don’t know what it’s for, because your brain doesn’t always process information the way you or others want it to.
And, for those of us who need to adhere to treatment regimens that require obvious physical things, there’s another element of challenge: The nondisabled stare. Try wearing braces, using a cane, wearing an eyepatch, or doing anything else that obviously marks you as different (actually, please don’t, I hate disability simulations and speak purely rhetorically here). The experience is different for everyone, but at least some of us come up with excuses not to do it in public because we just want to go about our business without being stared at or harassed. ‘It’s just for a minute,’ ‘just this once,’ are things I say to myself. For those who don’t get to choose whether to use obvious physical markers of disability, the choice becomes ‘stay home’ or ‘go out in public anyway and grit your teeth.’
Wearing or using an obvious marker of disability is a political act, and sometimes we just want to go to the grocery store, not make a political statement. We all encounter the nondisabled stare in different ways, but it’s always there, ever-present, lurking in the public spaces we interact with. Sometimes, the energy to deal with it just isn’t there, and the result is staying home to avoid it, and a subsequent narrowing of your life.
I hear a lot of people saying that staring is natural and people should just expect it and people mean well and they are just curious and they can’t be blamed for being startled by something they aren’t used to seeing. I don’t see that flipped very often, I don’t see the people making those excuses examining them and wondering what it’s like to have everyone staring at you when you step outside your front door, everyone making comments. People think it’s ‘no big deal’ to have someone stare at you for 30 seconds because you look unfamiliar, but they don’t realise that when you go out, everyone looks at you like that, and it’s not just 30 seconds, it’s the entire time you are out. An endless series of 30 second intervals, paired with whispering and nudges and sometimes emboldened personal questions.
‘What’s wrong with your eye,’ I get, whenever I wear my eyepatch. Maybe I don’t feel like telling you. Maybe it’s not your business. ‘Is something wrong,’ people ask, when the reflex tears start. I want to say, ‘yes, society,’ but then I would have to explain, for the umpteenth time, how the nondisabled gaze works, what it’s like to have people constantly think you are public property because you look ‘weird.’ What it’s like to hear the same fucking pirate joke 12 times in one day, each time told by someone who thinks it is totally original and you have never heard it before.
So, yeah, I’m noncompliant. But it’s not because I am willful or I don’t understand how important my treatment is. And the same holds true for a lot of other ‘noncompliant’ patients. Shaming us isn’t really the most effective approach to the situation, despite what the medical establishment sometimes seems to think.