I'm Not Disabled, I'm Just Too Sick to Do Anything

How being litigious helped me believe in my own disability

Me after becoming officially disabled. (I do eat lots of spinach!)

During my first two years with a severe chronic pain condition, I refused to call myself “disabled.” This seems odd in hindsight, as I readily self-identified as many other things: woman, Christian, San Franciscan, dog parent, lazy dresser, belligerent board game player, passionate waster of Kleenex. But when it came to the term “disabled,” I thought I wasn’t allowed to assign this label to myself, kind of like how you’re not allowed to give yourself a promotion at work, or you’re not allowed to call yourself a funny person (even when everyone laughs at your jokes and the only reason you’re NOT getting into standup is because you’re too photosensitive to tolerate stage lighting). I also was, practically, in too much pain to think deeply about my identity and if I should be making any changes to it now that my life had been turned upside-down.

I left the task of determining whether or not I was disabled to my many neurologists, because they’re doctors, isn’t this part of their job? Answer: No, it’s not. Neurologists prescribed drugs, performed neurological exams, and typed out inaccurate notes about my situation, but they would not, under any circumstances, wade into the murky waters of defining disability for something as slippery as migraines. The neurologists left this to my employer’s disability insurance company because, well, they weren’t called a disability insurance company for nothing, were they?

A year after I left full-time work, my disability insurance company case manager, who I’ll call Olga, called to tell me that I wouldn’t get any more disability payments. She’d asked a bunch of “neurologists” what they thought of my case, and these super-smart doctors agreed that Migraine wasn’t a disabling condition. (Are neurologists who work for an insurance company really neurologists? Asking for a friend.) 

“Be that as it may, Olga,” I replied in a tone that was half confident, half condescending, “Migraine disease is actually one of the leading causes of disability globally. As for me, I’m currently medicated within an inch of my sanity and still in pain 24 hours a day. Do you know what constant pain does to the nervous system, Olga? It over-activates the amygdala, resulting in a chain reaction across the parasympathetic nervous system which…”

Actually, I didn’t say any of that. I just said ok, then hung up the phone and cried into my Dory the Fish stuffie. (Dory said I should just keep swimming, but I told her to shut up.) I certainly felt disabled, as I couldn’t even remember the last time I’d been able to make it through a day without needing a nap, and I’d given up on socializing, traveling, and leaving the house long before it was cool. But I was told that I wasn’t disabled, so that was that. Because I was still unable to do my job, I quit of my own accord the following month.

My disbelief in my disability only grew from there. It’s not that I didn’t believe I was in pain every day or struggling with frequent light sensitivity, nausea, and dizziness. The disability shoe did seem to fit, but I also knew I wasn’t as bad off as some other people with “real” disabilities. How could I be disabled when I could still walk, talk, and even ride a bike for a short distance, assuming the sun was neither too bright nor too high nor too low, and even still I’d get a migraine afterwards? I feared calling myself disabled only to have an angry mob of much more disabled people (who were likewise still capable of walking, and who in my mind all look a bit like Popeye the Sailor) chase after me with pitchforks in hand, ready to impale me for being a fraud.

As a child of two hard working blue-collar parents, I also grew up believing that the government gave too many handouts to lazy people. The disability system seemed unfair—why would we force people who worked hard for a paycheck to give some of it to people who didn’t work?! So when I suddenly became one of those people who didn’t work, I didn’t know what to think of myself, nor did other people know what to think of me. One relative, shortly after I started getting chronic migraines, asked me how I was enjoying my retirement. He was joking, I hope, but it only reinforced what I already thought to be true: I was being lazy, and not working because I secretly enjoyed sitting around on the couch all day.

People have enough difficulty talking about disability, but they have an even harder time talking about disability-in-denial. Because of my disability imposter syndrome, I endured the following conversation countless times:

Some Person: “Hi, I’m Some Person, what’s your name?”

Me: “I’m Natalie, nice to meet you.”

Some Person: “Likewise! What do you do Natalie?” 

Me: “Err…I get migraines?”

Some Person: “Like, that is your job?”

Me: “Ya, I guess so.”

At this point, the Some Person would always grow very interested in a dog humping an Amazon box across the street, or a text message from their grandma. (Chris Stanton rightly pointed out how frivolous and frustrating questions about work can be in one of his recent posts.)

I know that people hire lawyers all the time, like to get paid for spilling coffee on themselves, or to express frustration over the discovery that boneless chicken wings are not, in fact, chicken wings. And yet, I’d never considered hiring one. The idea of it felt wrong, as if this action was reserved for either criminals or confrontational jerks. After all, calling someone “litigious” is not a compliment. But when a friend of a friend who also had chronic migraines gave me the number of a disability lawyer, for some reason, I called her, resolving to never tell anyone that I did.

“You’re disabled,” the lawyer told me. Her validation of my situation made her seem, suddenly, worth her weight in gold. This means she was worth roughly $3 million, give or take a few hundred thousand, depending on her exact weight. I only hoped she would charge me less what she was worth, when all was said and done.

The lawyer prepared to sue the butt off of the disability insurance company for discontinuing my payments. Even though I’d left my job, because it was due to my illness, she said I was eligible for the money. The litigation involved, among other things, drowning Olga in some FOUR HUNDRED pages of interviews, case studies, headache logs, and “vocational expert” evaluations, all of which proved that I was disabled by chronic migraines. I grew exhausted just reading the appeal, and apparently, so did the insurance company. 

“Great news!” my lawyer said in an email about six months later, announcing that the appeal was successful. I was officially sick enough to get paid for it. What a funny thing to celebrate, I thought. And yet, it did feel like great news. If I was going to be in so much pain, I might as well have some money to offset my mountain of medical expenses. It was obviously nice for my lawyer, too, who did NOT charge her weight in gold but still charged a lot. It was also nice for the IRS.

Like most headache medications, this whole process had an unintended side effect. Unlike most headache medications, that side effect was not a headache. My lawyer’s appeal detailed how limited my life had become since getting migraines, and how much I struggled day-to-day to survive. The packet included interviews my lawyer had performed of my closest friends–all of whom I’d been ashamed to tell about hiring a lawyer.

“She can be utterly incapacitated,” said one friend.

“Her health completely knocked her out…her disability has been long-term and destructive,” said another.

In reading their words, I finally saw what my friends saw: I wasn’t exaggerating. I was disabled. 

The disability shoe had fit for a while, but for the first time, years after my chronic migraine disorder began, I finally decided to wear it. (Note that calling myself “disabled” is not the same as calling myself “differently-abled.” I talked more about this here.) This made conversations with strangers immediately way less awkward (for me, at least). And, much to my relief, no Popeyes came chasing after me with disability-imposter pitchforks. 

In fact, the disabled people I’ve met since “coming out” as disabled myself have all been friendly, encouraging, and deeply understanding of what I’m going through. I also find that hearing from other disabled people about their experiences, now that I’m one of them, gives me a special kind of strength. It’s a strength that comes from feeling the victories, losses, and stories of others as deeply as I feel my own. It’s a strength that comes from not being alone, even when I’m by myself in a dark room for extended periods of time.

Olga recently came after me with more paperwork to prove that I remain disabled. Wish me luck and no need for a lawyer! 🧠

This story is in honor of Disability Awareness Month (which is, for unknown reasons, not the same month as Disability Pride Month). Believe it or not, I’ve had an easy time getting financial support compared to most people with invisible and/or variable disabilities. With over 40 million Americans experiencing invisible disabilities, validating and supporting these and all disabled people is more important than ever. Thanks so much for reading, and for doing what you can to support those in your life with disabilities.

Thanks to Kat Foley for helping me edit this post.

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