I’m Disabled

I had a horrific nightmare Monday night, one of the worst I have ever had in my life. As a result, I ended up losing most of Tuesday. Losing Tuesday means I spent a chunk of the afternoon crying and generally being freaked out. I tried to meditate, and started crying. My dog Rosie, who is not usually the sort of dog to try and comfort me, forced her way onto my lap and stuck her face against mine until I calmed down. Yesterday and today, I spent time figuring out what happened with a much clearer head, and I’m moving forward again. Days like Tuesday, any day when I have a huge bout of sadness or anxiety, is kind of like having a fever. Although it sucks and it’s disruptive, it’s doing something useful for me. It’s burning through emotions that I need to vent. Like with a fever, I have to keep an eye on it to make sure it doesn’t get dangerous, but most of the time, it burns itself out and then I’m all right. Often better than all right. And like with a fever, if I ignore it or try to work through it, I only end up making myself sicker.

In other words, here’s what I’m coming to terms with: I have a severe chronic illness. I have a disability. Just saying that is really hard, and makes me realize how much internalized ableism I have going on. Something in my mind (and I should stress, this is for me only, not other people that I know) equates me accepting my disability with being useless or weak. My mental illness is a disability. I’m still coming to terms with that. “Disability” is something my family had a horror of. They’d say things like “Did you hear about Jim? He had to go on disability,” said in tones usually reserved for things like “he got a girl pregnant”. The times that I thought about applying for disability, I was always discouraged from doing so, because for my family–and to be honest, for some of my therapists–that was the equivalent of me “giving up”. It meant that I’d lost the fight against my mental illness. That I was giving in to it. It meant that I’d never accomplish anything again.

But that isn’t true. The only thing that’s true about me being disabled is that I can’t do things the same way as other people do. That’s it.

What I learned from my family–my mother–was that when you have any sort of illness, you push through. Because work and productivity are more important than anything else. Especially work. You do whatever it takes to keep your job, period. I tried to do that. And frankly, I failed. Here’s my secret: I’ve been fired from almost every job I’ve ever had as an adult. Even the two jobs where I was laid off, I suspect that my performance played a role in determining why I was one of the layoffs. For years, I’ve had a lot of shame about that. I wasn’t trying hard enough. I wasn’t working hard enough. I was a bad employee. And here’s the thing: I’m not. When I’m having good days, I work my ass off. I am dedicated. I am damned good at what I do. Even the jobs I was fired from, my performance reviews were often stellar. But the problem with having a severe recurrent illness like depression and anxiety is that I can’t be consistent. I am incapable of being “on” forty hours a week, 50 weeks a year. I don’t always have control of when I am “on”. When I was working full time, I got very very very good at hiding my symptoms, at faking my way through my bad days. But it came at an enormous cost. I wasn’t able to cope with the roots of my illness because I was so busy hiding the symptoms. I was exhausted all the time, and not making any progress. I constantly felt like I was failing because often the only thing I managed to keep together was work, and sometimes not even that.

It’s not an accident that my mental health started improving dramatically when I started working from home in 2012. For the first couple years, I worked for a company, until they laid me off (I still contract for them now). And it’s not an accident that my mental health started improving even more dramatically when I started working for myself. Some of that is because I have a lot of trauma around work–between my mom’s constant obsession with me having a job, and the fact that I have been fired repeatedly, of course I do. Working for myself, that trauma isn’t getting triggered nearly as often. (It does still happen. If a client says, “Can we talk?” I still instantly think they’re going to ‘fire’ me.) I have the freedom to set my schedule around my symptoms. I don’t need to work as many hours to get by. If I have one bad or off day a week (which isn’t unheard of at all), no one’s counting my sick days if I take the day off, and my clients don’t know that the hour I spent working for them that day, I worked while coping with an anxiety attack. I don’t have to keep my “happy normal” mask on for my coworkers.

Here’s the paradox. It’s easy to ask, “Lisa, if you spent Tuesday afternoon having a crying jag, how on earth can you say that you’re doing better?” Well, for one thing, I’m deep in winter right now, and things are always harder then. It’s not always like that. For the other though, when I was working full time, I would still have the same feelings, but I had to suppress them. I would suppress and suppress and suppress until I’d end up plunging into a week-long pit where I couldn’t suppress anymore, and sometimes I’d wind up in the hospital. Now, when I have an attack of unpleasant feelings, I’ve learned how to sit down and just let it happen. I lose an afternoon feeling all that shit, but then it’s over. And usually I wind up having some sort of major insight in the process. (Like this one.) It takes a tremendous amount of time and energy to manage my symptoms and make the necessary accommodations for myself in order to get things done. For twenty years I didn’t do that. But now, for the past four years or so, I’ve been able to make those accommodations. As a result of all of this, my outlook is better, my self-esteem is worlds better. My issues with relationships of all kinds are more stable. My overall quality of life is so, so much better. By having the space and time to cope with my brain’s particular quirks when they happen, I don’t have week-long shutdowns as much, if at all.

In other words, to be the person I want to be, and to get things done, to exist, I need a pretty wide set of accommodations, accommodations that most employers can’t provide.

So I had to find a way to arrange my world to give myself the accommodations I need. I’m lucky that I could do that. But I’m also skilled enough and hard working enough that I could make it happen. I’m realizing now, my issue has never been that I’m lazy or that I don’t try hard enough. My issue is that I’ve spent my life trying to climb a ladder with a hundred-pound weight around my ankle. Sometimes I was able to keep up with the people climbing around me, but eventually, the weight would pull me back down, and sometimes pull me off the ladder entirely and send me crashing to the ground. And all the while, I had to act like there was no weight around my ankle. I mean, how much strength must it have taken for me to successfully pass as normal as often and as long as I did?

But how much healthier and happier am I now that I have a wheelbarrow for that weight instead of dragging it after me?

By recognizing that my mental health is never going to be “normal”, and accepting the label “disabled”, I am not giving up. My illness isn’t winning. On the contrary, what I’m doing is turning around in my tracks, looking my illness in the eye and saying, “I see you, you fucker, and now I’m going to fight you every single day to make sure you don’t ruin my life.”