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What Millennial Burnout Feels Like When You Have a Disability

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Like millions of other people, I read Anne Helen Peterson’s viral article “How Millennials Became the Burnout Generation” and found myself relating to a lot of it. I’m on the line between Gen X and Millennials, but I’ve never really felt like I fit into either group. The life circumstances that have shaped me are less about when I was born and more about my experiences as someone who has been disabled since birth. The struggles Peterson discusses in the article are all too familiar for me — but the cause of them is far different. I have disability burnout, the exhaustion of existing as a person with a disability in a world not built to understand my needs or see my value.

I’m part of what’s known as the ADA Generation, the cohort of disabled people who came of age after the passage of the Americans With Disabilities Act in 1990. I remember watching President George H. W. Bush sign the ADA on TV and feeling tremendous hope. The fight for disability rights wasn’t over, but now at least there was a law to recognize we have them. I felt as though the President cared about me, a teenage girl with cerebral palsy who dreamed of being a famous writer and living in a castle with a tower (and an elevator, of course). I felt sure that by the time I finished high school and got my college degree, the country would be accessible. I could do and be anything. The ADA sold the American Dream to a generation of people with disabilities who would never have believed it could be ours otherwise. It sold us a pack of lies.

Don’t get me wrong, I’m grateful for the ADA, and in some respects things have gotten better for people with disabilities. There are parts of the country I can visit and worry very little about whether the restaurant I want to eat at will have a ramp, or if I can hop on an accessible bus. Some communities continue to drag their feet and limit opportunities for their citizens with disabilities because of inaccessible buildings and transportation — New York City, I’m looking at you — but generally speaking, physical access isn’t the biggest barrier people with disabilities face now. We’ve fixed our building codes, but attitudes take longer to shift.

Millennials struggle to find good jobs that pay the bills and are emotionally rewarding. As a millennial with a disability, I’ve often struggled to find any job at all. Employers are supposed to hire us if we’re qualified, but even as a Stanford University graduate, I saw numerous poorly hidden expressions of shock and disappointment when I arrived for job interviews in my wheelchair. I was the last person among my college friends to get hired and the first to be laid off. My successful employment experiences have mostly been either running my own business or working at a disability-related organization that recognizes my capabilities, like my job here at The Mighty.

Like many people with disabilities, when I’m fortunate enough to have a job, I hold onto it for dear life. Studies have shown employees with disabilities are more loyal and tend to stay with a company longer. Is this just because we appreciate being given an opportunity, or because finding another job would be next to impossible? I like my job, and short of winning the lottery and opening a dog rescue, there’s nothing I’d rather do than write about and support the disability community. But I also know that even though I have a Master’s degree, an excellent portfolio of writing and a strong work ethic, if I lost this job, I’d be hard-pressed to find another. That keeps me up nights sometimes, even though I work hard and do my best.

I’m one of the roughly 30 percent of people with disabilities who are employed. You might think being among this fortunate few means I don’t rely on government assistance, but sadly that’s not the case. Due to the severity of my disability, I need personal care assistants to help me get out of bed, bathe, dress and do other basic tasks many people take for granted. Private insurance does not cover this kind of care — only Medicaid does.

For years, I was able to pay for my care out of pocket with a small settlement from the negligent doctor who caused my cerebral palsy. However, in my late 20s I was drawn into an abusive relationship with someone who exploited me emotionally and financially. By the time I was able to extricate myself, my savings were decimated and I had no choice but to go on Medicaid to get my care covered. Thus I was thrust into a broken system that holds back millions of Americans with disabilities and keeps us trapped in an endless cycle of poverty and stress.

If you want to know why the promise of the ADA remains a pipe dream for so many, just look at how the government handles disability support programs. Most non-disabled people have no idea how expensive and time-consuming it is to live with a disability — and how stressful it is not just to obtain the services you need, but keep them. Getting SSDI or SSI, Medicare and Medicaid isn’t a matter of filling out a couple of forms. There are dozens of forms, records that have to be obtained and mailed, interviews and appointments and so much more. Most people are denied benefits and then have to go through a grueling appeals process. Since my cerebral palsy is visible and well understood, I got approved on my first try — it “only” took nine months of paperwork hell and two meetings with doctors.

To be eligible for most disability-related programs, you have to be poor. To receive Medicaid, you must have under $2,000 in assets. The home you live in and one car don’t count, but just about everything else does — checking and savings accounts, retirement funds, stocks and bonds, even life insurance. If you’re married, your spouse’s income and assets count against you — which means many people with disabilities can’t marry the person they love, and some couples even divorce because otherwise one spouse’s medical care would bankrupt the other.

Some people with disabilities cannot work at all, and have no choice but to apply for SSDI or SSI and live solely on the meager payments they receive if approved. This puts them into a state of extreme poverty and chronic anxiety, struggling to juggle their expenses while living on the margins of a society that regards them with suspicion, looking for any excuse to deem them “lazy” or “fakers.” This is a recipe for burnout if ever there was one.

For people like me, getting disability services is complicated in a different way. I’m clearly and obviously severely disabled, and my personal care assistants cost about $4,000 per month, which I cannot afford to pay. Who could? But I can work and want to work. The trouble is, the system isn’t set up for people like me. Society in general doesn’t understand how someone can be both capable and also in need of assistance. Every day of my existence, I rely on a patchwork of programs and rules — tacked on to the “you must be poor” rules — that attempt to help people like me who are disabled and employed. It becomes a delicate dance of earning just enough to get by but not too much to once again find myself ineligible. I have to pay attention to how much goes into which bank account, and keep receipts for anything I could possibly deduct as a medical or business expense.

I’ve gotten creative and found some workarounds, but being poor on paper and scraping the bottom edge of middle class in reality is constantly stressful. I feel like instead of riding around in a wheelchair, I’m balancing precariously on a unicycle and I could tip over or careen into a wall at any moment.

The issues facing burnt-out millennials are magnified for people with disabilities. I struggle to get “simple” stuff done because of the fear and stress I experience every day. There’s no stability when you have a disability and rely on the vagaries of the government and insurance companies. I’m terrified every time I open my mailbox. What fresh hell will await me there? A “review” of my SSDI benefits — aka the government might try to cut them off? Section 8 yearly paperwork, for which I must sign a new lease to rent my house from my dad, and spend hours compiling my bank statements and a box full of receipts to prove I spend almost everything on my disability? Medicaid deciding I’m ineligible because they say I didn’t mail in paperwork I never received? A paper saying I could qualify for utility assistance? Great news; my bills have skyrocketed because it’s -9 degrees and people with cerebral palsy can become literally immobile when we get cold. But there’s yet more paperwork, asking the same questions I’ve already answered for Medicaid, Social Security, Vocational Rehabilitation and too many other agencies to count.

Then there’s the list of phone calls I need to make but keep putting off. Yet again, insurance stopped paying for my prescription at the beginning of this year, even though I successfully appealed it before, and even though I did a sleep study I didn’t want to get an on-label justification for the off-label reason I actually need the medication. That off-label reason, by the way, is fatigue related to my cerebral palsy; in other words, without said medication, I wouldn’t be able to work or deal with all the damn paperwork of being disabled. This medication would normally cost $800 a month, but a couple years ago, a kind soul told me about GoodRx, where they have a coupon that reduces it to $90, or $40 some lucky months. I shelled out the $40 in January. At least it’s another expense I can show Section 8.

I must do these things, but honestly, some days I can’t. I’ll force myself to deal with just one issue and still be left exhausted and crying. I know it doesn’t seem logical. My father, a financially secure retired businessman and Baby Boomer, looks at these matters practically. He makes to-do lists and gets everything on them done with remarkable efficiency. When I explain that life with a disability is a job in itself, he says that’s a good way to look at things. “Think about how much you could save by getting Medicaid to cover your bathroom supplies,” he suggests, “and divide that by your hourly pay at your job. Then you know how many hours are worth spending on making it happen.”

He’s right, of course, but there’s more to it he doesn’t understand. I might accomplish that task, but ten more equally stressful ones await. Living with a disability is being held hostage to the relentless grind, the death by a thousand paper cuts of having to deal with form after form, phone call after phone call, caseworker after caseworker and never being able to feel secure in my existence. I can’t “just do” the things on my list, because each of them steals a little piece of my soul, and I have to find some way to get it back.

Studies have shown that poverty and being part of a marginalized racial or ethnic group increases stress, which contributes to premature aging and disease. People with disabilities also face systemic discrimination, but there’s an added paradox for us. We fight every day to show the world how capable we are, how much we can do — but to get the services we need, we have to demonstrate everything we can’t do, often in excruciating detail. Over the years I’ve learned how to say what I must to get what I need without believing I’m useless and incapable, but it still gets to me sometimes.

This is often one of the biggest struggles for people who become disabled later in life. They may minimize the difficulties they face and not ask for support out of shame. Every time I see an elderly person struggling to cross the street, I think of the shame society has attached to being disabled. Perhaps that person believes they must suffer in pain because even though a powered wheelchair or scooter would set them free to live again, it would be embarrassing to be seen “like that.” I also think about how if that person does realize they deserve better, if they try to get Medicare to cover a wheelchair and find a local agency to build a ramp to their house, their needs might be denied because technically, they can walk. We are damned if we do and damned if we don’t.

Living with a disability is being held hostage to the relentless grind, the death by a thousand paper cuts of having to deal with form after form, phone call after phone call, caseworker after caseworker and never being able to feel secure in my existence.

There is no shame in having a disability. What’s shameful is that people with disabilities are constantly questioned and doubted, forced into poverty and must jump through endless hoops just to survive. Fighting for every single thing we need leaves us with no physical or emotional resources left to pursue the things we want. Most of us are completely blocked from being part of the middle class, because a middle class salary is too high to qualify for Medicaid, but not enough to pay for personal care and other medical expenses out-of-pocket.

America supposedly rewards able-bodied people who work hard; it unquestionably punishes disabled people who do the same. And it completely devalues those for whom work isn’t an option, those who cannot fit into the capitalist paradigm of employed = valuable. If you want to see multiple generations of burned-out people with almost no shot at the American Dream, look no further than people with disabilities.

When you live with a disability, millennial burnout — and Baby Boomer, Gen X and soon Gen Z burnout — may seem inevitable, but my experience demonstrates how our broken system of disability programs and lack of universal healthcare are the biggest contributors to physical and mental exhaustion. I’ve always had to deal with ignorance and discrimination based on my disability, but my life was a lot different when I didn’t need Medicaid.

Until I met my abusive ex, I had a shot at the American Dream — not because I had money per se, but because I had stability on a fundamental level that most people with disabilities don’t have and likely will never have. My house and everything I had earned was in my own name, was mine in the eyes of society. I didn’t have to deal with mountains of paperwork or live fraught with fear about losing the disability services that kept me alive. I was free from judgment, from strangers deciding whether I “deserve” the things I need.

I’m still fortunate in many ways. Because of my previous financial stability and my job, my situation is less precarious than many, and I have family support as well. But the abuse I suffered, followed by the enormous change in my life circumstances and the years of burnout I’ve experienced as a result, have taken a massive toll on my health. I lost a lot of my physical strength and abilities, and need significantly more hours of care than I did in the past. I gained weight and my self-esteem took a nosedive. I now live with chronic pain, PTSD, anxiety attacks and a persistent low level of depression and dread. My only reprieve is having a job I enjoy, and being able to travel and blog. Many people with disabilities don’t have access to these things. Like I said, I’m fortunate — but it often doesn’t feel that way.

I live in a near-constant state of burnout. At the end of the day when able-bodied Millennials shift over to their third side hustle, I’ve just collapsed mentally after organizing my medical expense records and can’t handle anything more than a half-conscious 4 a.m. Netflix binge. I judge myself harshly for not getting things done, even when I know I should be kinder to myself.

I know the system has always been stacked against marginalized groups when it comes to achieving success, but my dad’s old-fashioned capitalist values are still burned into my conscience. As Peterson says, “I never thought the system was equitable. I knew it was winnable for only a small few. I just believed I could continue to optimize myself to become one of them.” I’ve “optimized” myself, but it’s not enough for me to achieve the level of career and financial success I’d likely have had were I not born with a disability, and it probably never will be.

That doesn’t mean I’m giving up. I will continue to fight so people with disabilities — along with people of color, LGBTQ people, women, Millennials and other struggling communities no longer have to burn ourselves out to survive. Societal prejudice won’t disappear overnight, but laws like the Disability Integration Act and Medicaid for All would help free people with disabilities from the poverty trap and the constant fear of being punished for success.

In the meantime, I will keep pushing on, trying to find balance and keep the burnout at bay. Whether you’re a Millennial or Gen-Xer, disabled or chronically ill or struggling with being limited and judged based on who society thinks you are, I hope you can keep going too. Always remember you have value.

Getty image by Liudmyla Supynska.

Originally published: February 7, 2019
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