It’s very hard to grasp what it’s like to live with a disability until you’ve experienced it yourself. I think it’s not something people just think about, and it’s also just not easy to imagine even when you try to.
So here’s what it’s like. You live life day-to-day. You wake up in the morning knowing that you’re gonna have difficulties getting through the day - depending on your disability, you might be thinking “is today gonna be a good day, or a bad day?” (that’s the good one) or you might think “here we go again”.
You start to plan your appointments ahead so they don’t all fall on the same day, or even in the same week. Doing more than one big thing a day? Impossible. You can’t go to the doctor, get groceries, and then head to your friends house. You do one thing a day tops, so you have to plan your entire week ahead accordingly. No more spur of the moment things like a friend calling you at 5PM asking if you want to grab drinks at their place, because you already did something else today and you don’t have it in you to do anything else.
When the appointment comes you have some hope that you’ll be able to get through it fine, but you’re not optimistic. You’d rather not go because it’s torturous, but the pros outweigh the cons so you still go. What used to take 10-15 minutes to do now takes 45, and you’re tortured the entire time.
There are many things you need to do, like say renewing your driver’s license, getting your teeth checked, getting new clothes, but you don’t get around to it because you know it’s gonna be torture and so you put it off for as long as you can, sometimes forever. (thankfully we have online shopping, even if it doesn’t solve everything).
In my case because of my disability the kind of stuff I have to pick is if I’m going to brush my teeth, wash my hair or shave my beard. You can only do one, so plan accordingly. That’s the kind of decisions I have to make daily. I’m going to brush my teeth tonight and wash my hair tomorrow, I think. But not both at once, that’s impossible.
People ask you about moving out, finding a girlfriend, getting a job… you have to stop them. They don’t understand because this is so alien to them. My life is focused on getting through the day, one day at a time. Currently, this is slightly more manageable – I’m “lucky” that my disability seems to have some triggers, so I can usually stay at home without too many issues (so long as I mostly do no physical effort). Getting a job or moving out is so far out of my mind that I don’t even think about it. There’s no point thinking about it, because there’s no answer for it. I would just be torturing myself over what my life used to be like.
To be clear I don’t mind my friends talking about their lives. I’m happy to hear and talk to them about it. But there is no point in asking me about what I want to do in life when my day-to-day is thinking stuff like can I cook lunch without puking? Can I water my plants without puking? Oh, I’m expecting a delivery tonight and I know putting away groceries is one of my triggers (for some reason), so I probably should take it easy today until then, so I can put the fucking groceries away like an adult.
And then on top of that people will judge you and downplay your disability. “Just get over it”, “just live with it” or “just push through and do it”. I do live with it, I don’t have any choice but to live with it. What takes you 10 minutes takes me 30, every time and for everything. Your commute to work sucks? Mine would suck just the same, except it would take me twice as long and the entire time it’s also taking all I have in me to not throw up on the side of the road. It’s dangerous to drive for too long because if I get into an episode while driving (which happens a lot) I stop paying as much attention to the road. I try not to drive during rush hour.
And the worst part is that it’s not visible. People see you and assume everything is fine, so they talk to you normally while you’re standing here not listening, thinking about nothing but not throwing up. They give you appointments during rush hour. They ask you to come in for an appointment that will last 5 minutes, but takes you 45 to get ready to. They see you stop walking and breathe deeply and wonder wtf is wrong with you. They talk to you like they talk to anyone else, because there’s nothing about you that screams “I am this close to throwing up right now if you don’t stop”. And so they don’t believe you have a real problem, because they don’t see it. If they know you have it, they forget over time and assume you just got better. They don’t check up on you, because they’ve seen you at times when you were doing better and assume you’re cured now.
Everyone always comes with their advice, hoping there is some sudden cure that exists, because science has all the answers in the modern day. but nobody ever asks you how you cope, what they can do to avoid triggering you, or what it’s like for you. They might concede you have a disability, but it’s not a real disability. It doesn’t count. The threshold for what counts is so high, nobody would ever be disabled if they applied this standard to everyone.
Communists are generally better about this.
If you’ve been ill or disabled for a while, other people get over it. Like when I was diagnosed with cancer, at first people were shocked and offered help, but as my illness wore on and I didn’t get better, these people got bored of it. Soon, it was no longer shocking or exciting to them. I still continue to need help, I am still unwell but everyone I knew drifted away and didn’t bother to stay in touch any more because I’m just some boring disabled person who needs help and isn’t fun any more. They can move on from it but I can’t. And then you get all sorts of shit for still being ill or disabled, like it’s been ages now, time to get a job! Especially from the benefits office, the government and society at large. Like there’s a time limit on being ill or disabled. You’ve been ill or disabled and a drain on society long enough so get a job. Like, what? I’m sorry it’s been a long time but I’m still in active cancer treatment and suffering immense, life-ruining side effects. I can’t just say “It’s been a while now, I’ll get a job.” My cancer treatment caused me to have a stroke and now I can barely even get my own clothes on due to the disabilities I’ve been left with. I’m having multiple foot surgeries, because of infected ulcers caused by the cancer treatment and I’m adjusting to becoming partially sighted but you’re right I have been a drain long enough I am sure there is some job out there where they don’t mind someone who can hardly walk or dress themselves, falls asleep during the day due to exhaustion from cancer treatment, can’t see properly and needs regular time off for hospital appointments and surgery.
I completely agree with you. In my case, I have agoraphobia due to issues with irritable bowel syndrome (IBS), and I can’t leave home much. When I do go out, many normal activities are impossible for me, like going for a beer - something I used to really enjoy. Because of this, some friends got tired of me. They see me as a whiner and coward, but they don’t understand how much I suffer with this.
The new people I’ve met recently have suggested some really cool plans, but I’ve had to explain my condition to them. They seem understanding, but I’m afraid they’ll eventually grow tired of the situation. Everyday things most people take for granted - like having a job or a partner - feel completely out of reach for me right now.
I’m trying to improve my health, but I’m not seeing any progress. I’ve thought about seeing a private doctor - I might have undiagnosed Crohn’s disease. Normally, IBS is manageable with proper diet control, but that’s not the case for me. I don’t think this level of symptoms is normal.
