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The Judgment That Comes With Going on Disability

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I’m sure everyone who is chronically ill and/or on disability has faced some sort of judgement. Everyone has an opinion. Everyone thinks they see things clearly. Everyone can be cruel given the right circumstance.

Often I’ve wondered what motivates this judgement. Do these people really think we’re evil, awful human beings? Do they really think we’re faking it? This would imply we’ve tricked doctors and tests somehow. Do they really think so many human beings want a “hand out?” Sure, there are people on disability who probably shouldn’t be, but I don’t think the percentage is as high as some would like to believe.

I know inside all of us there’s a need to have a purpose — to set goals and achieve them, to have a boss say you did a good job, to constantly grow in career and in one’s personal life. This does not go hand-in-hand with the idea that so many people want a “hand out.” I know this, because I feel it deeply. It keeps me up at night. It’s what keeps my interest constantly piqued. I think purpose is part of human nature. When you’re sick, this can be illusive. It makes life harder and often sad.

I’ve seen these people judge and judge until it happens to them or someone they love. Personally, I find that sad. It’s a hard way to learn.

The most reasonable conclusion I’ve found to this judgement is ignorance. I’ve seen and heard their arguments.

They’re paying for us with their tax money and that offends them. I should note that I’m not currently on disability. That decision hasn’t been made yet. However, if I am accepted, technically I could counter with, “Every member of my family is a tax paying citizen, and their tax money helps them take care of me.” I’d also like to explain that disability doesn’t pay much, at least not for anyone I’ve ever heard of.

If I do get on the program, it won’t pay for much. I will always have to live with a family member. The car I can occasionally drive belongs to my mother. I have access to a cellphone because of my sister. The money from disability won’t change any of that. It would help me pay my own medical bills, and make me less of a financial burden to my mother or any family member I will live with in the future.

Family makes me lucky. A lot of people don’t have that, or their families turn on them when they get sick. If that had been the case with me, I’d be homeless — probably dead. For those who are being judgmental, know that there are high stakes for us living with chronic illness.

There’s also ignorant jealousy that I’ve seen when it comes to judgmental people. They don’t see chronic illness.

They think, “Oh, they get paid to stay home. Lucky them.” I truly believe in their minds they’re overworked, which leads to pessimism and false conclusions. There might be someone who has thought this that ends up reading this, so let me explain how this isn’t reality for sick people.

Let’s pretend for argument’s sake that I’m on disability. OK. That’s established. I “get paid to stay home.” Let me break down what that looks like. I’m at home nearly 24/7. I leave for appointments or the occasional family outing they think I can do. I’m not going on lavish vacations. Even the vacations my family members have invited me on, I couldn’t go on. Even if they offer to take care of money or most of the money aspect, which they always do, I physically couldn’t make it through the trip. During the day I balance resting with mundane tasks healthy people don’t see as a big deal. This includes things like light cleaning, showering, having to brush my teeth and wash my face before bed.

In a healthy person’s mind, being paid to stay home would be amazing. They’d get to go to lunch with friends, spend more time with the kids, finally organize the house, go to a museum, have time to take a bubble bath, or drop everything at a moment’s notice and head to the beach. This isn’t reality, not on disability or trying to survive without it.

Being disabled means we can’t do those things. Sure, I’ve been to a museum before. I enjoy an occasional bath when I’m too tired to stand to shower. My family members really want me to see the beach and are trying to make it happen. (So far no luck, but I love that they try!) In certain terms, let me say: disability is like a consolation prize.

You tried to win at life with goals and dreams, tenacity and perseverance, but somewhere along the way your own body betrayed you, and you’re left trying to find happiness with what’s left. To survive in any way you need some amount of money.

I don’t have many friends. I was sick at a young age, so I never got to make many. Those I have live in other states or countries and are essentially online friends now, which is fine. I’m thrilled they care to stay in touch at all! I will never have the family I dreamed about. If I won the lottery today, that wouldn’t change. Money can’t make me physically have a baby or the energy and stamina to make sure the child has a happy, normal life. I would never get to be the mother I want to be. I will never own my own home, car, or cell phone. I have or will have those things based on my family member’s generosity.

People will see disability how they want to see it. I don’t think this essay is going to change that. I just thought I’d add my voice to the collective. Before I knew this was the path I was on, I thought disability was a good thing. The less homelessness the better. If the money can help someone get the care and stability they need to eventually go off disability, even better!

Now that I know this is the path I have to be on, I see it as helpful to my family, or I wouldn’t try to go through this process. It’s embarrassing, degrading, and depressing. Every letter, every form, every phone call makes my anxiety go sky high. I just want to scream, “Someone fix me, please! This isn’t what I want! I want a normal life! I want to get back to my goals! Don’t make me do this.” Really I want to say, “Don’t judge me.” You don’t know me or my life or what I’ve been through. I have broken a million times and should have broken a million more. I’m trying to survive just like everyone else.

Learn instead of judge. I look happy, because I try desperately hard to count my blessings. I’m often content, because I know what hell looks like. I seem normal because I want to be normal around others to any extent I’m capable of at the time. For me, that’s an escape from my everyday life. You’ll never know what I’ve lost or what I’ve had to work hard to get back. You’ll never know these things, because no one ever asks, and it hurts too much to tell.

I know I don’t know everything. I know I’m not always right. I know there’s always more to the story. I know there’s more than what meets the eye. Please try and know that too.

Getty Image by tommaso79

Originally published: April 3, 2018
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