What It Means for Me to Have a ‘Sitting Disability’

I can’t sit. Well, I can, but not for very long. When I do, it hurts a lot. There are many medical reasons why a person has difficulty sitting. Mine is because I have a throbbing pain in the low back (lumbago) and shooting pain down my left leg (sciatica). The sciatic nerve runs through your spine and down your legs. Pinching or compressing it in the spine can cause pain in a different location, such as the legs. I can handle the low back pain for a little while, but the sciatica pain in my leg is unbearable when it is rearing its ugliest head. I have also been diagnosed with fibromyalgia and failed back surgery syndrome (or post-laminectomy syndrome) after a fusion surgery at the L5-S1 level of the spine did not work and actually made things worse. I have a host of other things that I was diagnosed with and was later un-diagnosed, but listing those would be more like a book than a story.
 
 
Like many invisible illnesses, sitting disability is widely unrecognized. I wish to bring awareness of the patients managing their disability while receiving questionable looks from their family, friends, and even their doctors. Sitting disability is a form of chronic pain since the world is designed around sitting. There are chairs in trains, buses, planes, cars, restaurants, doctor’s offices, the workplace and so many other places. Most people don’t think about chairs, but I think about them every day, everywhere I go.

The people who are closest to me know that when we plan a night out, it means dinner or a movie, not dinner and a movie. I couldn’t do both. And if we decide to go to a movie theater, there are many restrictions. I have a few chosen theaters that work for me as I have dealt with the management and explained my disability. A night at the movie theater would take place on a slower night and I would have an assigned seat near the aisle. I would sit for a little bit, then stand in the side while watching the movie. Most theaters have a hallway to walk through before you get into the theater area with many seats. I would stand at the end of the hallway so that I could stand while watching the movie, but other theater-goers could not see me and I would not distract them with my sit-stand-sit activities. My loved ones are familiar with this inconvenient pattern, but strangers in public find it unsettling.

Transportation is the same. I carry an inflatable pillow with me everywhere I go that helps with situations where I have to sit. I don’t drive and when I am a passenger, I sit in the front seat or I don’t go at all. Most cars have a back seat design that is much worse the front seat and too far off the mark to be helped with an ergonomic pillow. Although not comfortable to my hip joints, I am usually able to stand on trains and buses. Thank God for this because I rely on them for the majority of my transportation. Airplane seats are the worst. I don’t have the money to upgrade to a seat that is workable, so I don’t fly. I don’t need champagne and caviar, I just need a seat that lies flat or lets me stand.

I have tried everything: physical and occupational therapy, massage, ice, heat, TENS, chiropractic care, acupuncture and dry needling, acupressure, biofeedback, steroid shots, and of course, surgery. More than a cure, I long for a diagnosis. I still don’t have a clear reason why I have leg and back problems. There was not an accident or injury I can point to. I sat as an IT consultant at a desk for many years and the pain gradually took over. No doctor can give me an explanation. It is disappointing when a doctor looks at my recent MRI and says, “Good news, everything is all right.” No, Doctor, it is not.

I continue to search for cures all the while understanding that I am looking for ways to manage the disability. In addition to my trusty inflatable pillow and car pillows, I have several pillows for sleeping and watching TV. I have safe-for-public exercises that don’t require me to lay on the ground and create a ruckus around me. To write this story I used a stand-up desk for using the computer in conjunction with voice-to-text dictation and a lot of breaks.

When people hear the word “disability,” they automatically think wheelchairs, because not being able to walk is the most visible disability. It’s not that I can’t walk, but I can’t sit. There are accommodations for wheelchairs everywhere, but not for people with sitting disabilities. This would mean providing a place to stand or lie down. To most people, this sounds ridiculous. At one time, the idea that buildings would be required to build wheelchair ramps was ridiculous-sounding as well.

The cause of sitting disabilities is controversial. Some believe more sitting equals more sitting pain. I believe that is true for myself. I had done a lot of sitting before having a sitting disability. If that is true for others, then we are heading for an epidemic as people in this country are increasingly sitting for long commutes, office hours at a desk, and binge-watching the latest shows.

There is little literature written about sitting disability and the community is underserved. I hope this story opens up the dialogue and encourages others to tell their stories.