I Have a Sitting Disability: What That Means

26 Mar

It’s something you hear about. In fact, I had the condition for years before I knew it had a name. It’s not exactly official. You won’t find it on the Center for Disease Control’s (CDC’s) website or even WebMD. But Google it, and you’ll see the disability community has adopted the term and it has a consistent definition. Basically, people with sitting disabilities are unable to sit.

As with so many conditions, there is a range of severity. Some people can’t sit at all, while others can’t sit for a certain amount of time without intense pain. Also, like so many conditions, its severity can vary from one day to the next.

I have a sitting disability, and it is one where I can sit for five to thirty minutes with some increased discomfort (the pain is always there no matter what I’m doing), and then it becomes more intense pain in my back and down one or both legs. It all depends on the chair and the day. My car is the most comfortable, with its low seat, lumbar support, and heated seat. Extra squishy office chairs are the worst.

Why don’t I simply call this back pain or sciatica? Well, that is what it is. I have osteoarthritis, degenerative disc disease, and one particularly nasty herniated disc that I twice was supposed to get sliced out and didn’t.

It is important to use the term sitting disability, however, to acknowledge an entire population of people who can’t do such a commonplace thing. Also to be acknowledged is that not everyone’s sitting disability is caused by a cluster of underlying conditions such as mine. In fact, some people with sitting disabilities have no diagnosable underlying condition. “Sitting disability” is the only diagnosis they have–and remember this term is nowhere to be found on the CDC’s website. Nor does it appear in the Americans with Disabilities Act.

Life seems to revolve around sitting. We sit in cars or trains to commute to work, where we sit at desks. We sit in waiting rooms for our appointments. We sit in chairs to eat meals with our families and then later on couches to wind down together. We sit in chairs to socialize and date: whether dinner, a movie, or a concert.

I personally have managed to create a work life conducive to my disability. I am a professional speaker who works mostly from home, where I lie down to work, and when I’m speaking, whether in-person or virtually due to the pandemic, I stand.

In public life, lying down is not an option. We don’t have a world filled with clean benches to lounge on. Standing, the other alternative, works for a time, but for me it gets difficult due to my fibromyalgia and chronic fatigue syndrome (look at me with all these conditions people don’t think are real!)

I feel bad when I go to church because I always pick¬† pew in the back, rather than sitting up front to vibe with my friend the pastor. That’s so I can stand up from time to time and lean against the back wall without being too much of a distraction to the congregation.

Where I’ve been most frustrated with this disability lately is in my work as a public servant. I am elected to the town council and I get impatient at meetings that run long because I’m in an intense amount of pain, paired with the fatigue of standing when I must stand. I also worry that other council members think I’m being dramatic (a fear that has manifested before). Also, I am now the chairperson of the municipal authority, and there are constant opportunities for trainings and even conferences, and I don’t sign up for them because I well know the chairs at those events and I wouldn’t last 5 minutes, let alone during an all-day training.

I finally have managed to do a couple trainings recently, though, because they’re being offered online. I would love to see this continue in the world, as many of us with all kinds of conditions have celebrated being able to work from home and therefore have accommodations we’ve been begging for years to have. We need to keep our voices raised about access and alternate ways to work and attend events.

It’s not just pain that stops me. It’s also fear.

Pain sucks, but I’ve come to know it well over the years. I’ve been judged plenty for being wimpy (I’m not). What I find so important to express is the bigger reason I don’t tolerate sitting: fear of further damaging my body. I plan for another 80 years in this skin suit, and when I’ve got strong pain in my back and tingling and pain shooting down my legs, that tells me I’m inflaming something, likely damaging it, if ever so slightly. So I try not to sit for that reason. And I try not to think about the future and what my “worse” is going to be.

What to Read and Watch

While I love to wrap up these articles with some tips on coping and/or helping, there is an amazing expert out there who’s already made a whole website about sitting disabilities, and here’s one particular article on helping that’s just perfection. (Meanwhile, definitely explore this whole site!) 7 Ways to Support People With Sitting Disabilities

And I didn’t get too far into explaining my own experiences because I already did that a lot in this article that’s worth a read. Let Us Stand (Literally)

And to see my pain firsthand, it’s loud and clear in this little movie I made a couple months after my disc slid out to the tune of 13 millimeters. Documinitary: Christina Irene’s Journey to Tennessee to Present to UT Faculty

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