My roommate and I have been having some trouble with our next-door neighbors. Our building’s walls are a new level of thin, and our neighbors are a new level of loud. They have parties in their room every weekend, and their—very loose–definition of ‘weekend’ includes Thursday, Friday, Saturday, and Sunday. Even when it’s just the two of them, they manage to make it a party. They are singing along to their middle-school-flashback music (thanks to them, I’ve had Sk8er Boi stuck in my head for almost a week—and thanks to me, you probably do now too), laughing loudly at whatever television show they are watching, and screaming for, from what I can tell, absolutely no reason almost every day from 9 a.m. until 1 a.m.
Unfortunately for me, quiet hours are from 11 p.m. until 7 a.m. As someone who needs twelve hours of sleep a night to function, and relative quiet while I’m awake so as not to get brain fog/headaches/just really, really annoyed, this doesn’t cut it. There’s not much I can do, but I decided to talk to them about my extenuating situation and see if making them aware of my situation would get them to be a bit more willing to quiet down.
Well, no seems to be the answer to my query.
I have always known that having an unknown, complicated disorder would mean that I wouldn’t be getting much sympathy from the general public. In fact, I’ve always known I wouldn’t be getting much of anything from the general public: not help, not accommodations, not concern. I can’t stand in lines anymore because I’ll either pass out or get too exhausted for the rest of the day, but telling the people in front of me, “I have POTS. Can I cut?” does absolutely nothing. Sometimes I say, “I have a fainting disorder and I’m feeling a little lightheaded. Do you mind if I cut?” But not only do I get a ‘no’ half the time, I feel like I’m betraying the POTS community that is working so hard to get POTS more well-known. I’m not getting what POTS actually is across to the people I’m looking to cut—they’ll just think it’s a fainting problem, and be none the wiser to what I actually go through each day.
Anyway, knowing how hard it is to get the intricacies of POTS across, I opted to tell my neighbors that I have a “chronic, debilitating illness” that requires me to get twelve hours of sleep a night, so if they wouldn’t mind quieting down, it would really help me. Their response?
“This is college. Sometimes I’m trying to nap and you guys are in here talking, and I can’t fall asleep. But do I tell you to quiet down? No. Because it’s college, and I’m respectful of the fact that other people are on different schedules, and that we’re living in a communal area, and so I just suck it up. You need to learn to suck it up.”
At this point, I’m annoyed at the fact that a) if I had said I have cancer instead of a “chronic, debilitating illness” they would have already agreed to be more quiet and b) I have POTS, and my body is physically unable to suck anything up, and it’s unfair to ask it to do so. The DYNA website says it best: “The aggravating, seemingly minor little things that go wrong each college day and the noisy irritating things which tend to go bump in the night in dorm housing situations — causing stress, disrupting routines and interrupting sleep – can all have a cumulative effect on a person with POTS.” But I press on.
First, I tell them that this is a two-way street, and if I’m asking them to be quiet at night, they can come to us when they are trying to nap, and we’ll quiet down. Then I try to explain to them why I’m unable to “suck it up.” I’m not asking for them to be silent 24/7—just for them to actually quiet down when we come ask them to, or maybe move to the lounge.
“Isn’t there a disabled floor that you can move to? I mean, don’t they have to accommodate you?”
At this point, I know it’s all over. I see that blank look in their eyes that comes with not having to fight through life. I know it well—before I got POTS, it’s how I looked. Ignorance really is bliss, and I was as ignorant about living with a disability as they are now.
They don’t know what it’s actually like to go through life with a disability. Sure, there are things that AU has to do for me. But there are hoops and more hoops and even more hoops to jump through to get the accommodations I need, and even then there’s only so much they can do for me. And no, for the record, there’s no disabled floor at AU. I checked at the end of last year when I was making living arrangements for this year.
Think about the last time you got pretty badly sick. It could have been the flu, or strep, or just an awful cold. It knocked you out for a week—that’s a week of classes you missed, plus a week of doing homework, a week of hanging out with your friends, and a week of doing the little housekeeping-type things you have to keep up with.
After a week, you’re feeling a little better—you’re not healthy by any means, but you’re well enough to return to civilization: you can go to class and do your work. But now, even though you’re only at 60%, you not only have to make it through your classes and get through your current work (which is hard enough), you have to do all the work you missed from last week. You’re operating at 60%, but you’ve got double the amount of work than usual. You’re already on a slippery slope and you have to deal with an avalanche. That’s what it’s like to live with POTS. Since you have to fight for every accommodation that’s supposed to make your life easier, it ends up just wearing you out more.
I don’t know what’s going to happen with my neighbors—if I had to bet, I would say that very little is going to change. And I know that I can’t really blame them. It is college, and if they want to be loud, they should be able to be loud from 7 a.m. until 11 p.m. (1 a.m. on the weekends). But I’m also not going to blame myself, and I’m not even going to blame POTS. So I have a problem with no real solution, and no one that I can really direct my anger towards.
If anything, this experience has really opened my eyes to the overwhelming ignorance surrounding disabilities, and has made me want to fight even harder to get POTS more well-known. So that’s what I’ll continue to do, and maybe one day, “I have POTS—can you please quiet down?” will be all that needs to be said to be effective.