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Why Being Disabled Is My Full-Time Job

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In a capitalistic society such as the one we have in America, frequently your worth as a person is measured by how much you “produce.” Sometimes that means selling products, or working at your job, while other times it means accomplishing things, such as housework and/or childcare. I’ve found that because of this mentality so many people seem to subscribe to, those who are home due to disabilities fail to ever live up to the expectations of productivity that many people expect from an adult.

Years ago, I stopped working after three years with my last nanny family. I still loved my job, and because I loved my job so much, I tried working again for another family, but it only lasted four months. It was because of my disability that I was no longer able to work a “normal” job — one where I go to work and receive a paycheck. I loved my job. It’s wasn’t just a job to me; it was a calling.

Though I’ve been home almost exclusively, with no income or hours to work, for almost four years, I’m still struggling to “justify” my productivity level or to make sure things are “fair” between my husband and I. Well all of those issues came to a head today, because between COVID and the many layers of anxiety and trauma it’s stirring up, I also have my normal, everyday disability: narcolepsy.

I feel I should give you some basics about my life before we dive deep. I’m 30 years old and live with my husband, our two dogs, and my dad and his dog. My father is retired, while my husband works a full-time job from home. I was diagnosed with narcolepsy at the age of 17, but starting in 2016, the symptoms began to take hold of my life. In addition to narcolepsy, I also deal with PTSD, which causes generalized anxiety and major depressive episodes. My trauma stems both from being sexually assaulted and issues stemming from my childhood. I’ve spent five years in therapy, joined by my wonderfully supportive husband, attending sessions almost every single week, working to deal with my triggers, and learning how to cope. So that’s me in a nutshell.

If you’ve ever been married or in a long term relationship, you know the smallest things can often stir up massive underlying issues, and my husband and I are the same. Today’s issue was over dishes in the sink, and while I can honestly say the “reason” is trivial, the issues were not. For almost four hours, my husband and I went back and forth, with me struggling to find the right words that would reach my husband.

I knew what I felt, and I knew it was valid. What I want to share now is the lightning bolt that helped reach both him and me when it came to the bigger issue that was brought up: how being productive when you’re disabled looks incredibly different when you’re a non-disabled person.

Let me lay out the lines. I’m not good at household chores; they take a lot of my energy, and most of the time they just don’t get done. When I do end up getting the energy to do them, inevitably my husband has to help me. This is a huge source of frustration for him, and his points are very valid if I was a non-disabled person.

If I was home for my leisure, as an able-bodied person, then I shouldn’t have much need for his help when it comes to the laundry or the dishes. I shouldn’t be overwhelmed and frustrated because dishes sit in the sink for days on end, and I should just get up and do them. Laundry should be done regularly and folded relatively quickly. This is because we don’t have children, and if I were a non-disabled person without a job, I wouldn’t have much reason not to do those things. Hell, some people accomplish those things with children at home, but I digress.

Today, as I struggled to explain that his idea of fair didn’t work for me, I struggled to find the words to explain my frustration. Then the lightning bolt hit, and I found the magic code that made sense in his mind. The conversation went like this.

Me: “OK, since I’m at home, what’s fair is that I put in 40 hours of work, whatever that might be, the same as you, right?

Him: “Yes.”

Me: “OK, help me math really quick. On average, I sleep between what, 10 and 14 hours a day?”

Him: “Yes.”

Me: “We’ll pick the average and say that I sleep four extra hours of sleep each day, and times seven, that is?”

Him: “28.”

Me: “So because of my narcolepsy, I use 28 hours a week just to sleep so that I can function, is that right?”

Him: “Yes.” The point was slowly dawning on him.

Me: “Every day, I have a migraine, which lasts on average (checks migraine app for average) 2.5 hours, times 7, so that would be?”

Him: “17-and-a-half.”

Me: (At this point I’m crying both from the realization that my “week” is spent just coping with my disability, and with finally reaching him.) “So that’s a total of what, 45-and-a-half hours a week that I’m just dealing with the physical reality of my disabilities.”

Him: “Yeah, and that doesn’t even include the hours you spend coping with your anxiety or depression, calming yourself down from being triggered, or dealing with the normal household stuff.”

At this point in the conversation, we both understood what had just been realized. My “productivity” time is completely used up from just living with my disabilities. I don’t have an option not to sleep to cope with narcolepsy. I don’t have an option to not deal with trauma, especially right now, while some of my major triggers are being hit because of COVID.

The magic of this way of thinking is that it applies to every single disability. It shows why people who do work full-time jobs while dealing with a disability, no matter how severe, might struggle to accomplish necessary tasks. Frequently, when people ask me how I’m doing, they ask me about my writing and how it’s going. Inevitably I have to say, well, it’s not going very far right now, because of all the other stuff I’m dealing with.

They ask this because when I introduce myself, I don’t say, “Hi I’m Abbi, I’m full-time disabled.” I usually say, “Hi, I’m Abbi, I’m a writer.” Because writing is my hobby, and I’d love to be a published writer someday, but the truth is that I am “full-time disabled.” I don’t get paid for it, and I would be judged for it if that’s how I explained it, but it is the truth. I spend 45 hours a week being disabled, and that doesn’t include the hours I need to sleep, the normal eight like other humans, or the time to eat and shower play with my dogs, and spend time with my husband. No, I spend 45 hours being “full-time” disabled.

Capitalism is a mindset, and when you’re disabled, there can be a lot of shame in not “being productive.” My hope in sharing this is that when you struggle to explain, even just to yourself, why you can’t accomplish something you think you should, or society thinks you should, or your partner thinks you should, you can reference these hours you spend coping with whatever disabilities or issues come up in your life. Don’t be ashamed of doing what you need to do for yourself and your health.

Originally published: April 22, 2020
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