Checkmate: Living with a Sitting Disability
In chess, checkmate is defined as a position where the king has been captured and has no other place to go. If the king moves to the left, he will be captured. If he moves to the right, forward, backward, it doesn’t matter. And when the king has no more moves, it’s checkmate. Game over.
I am trapped like the checkmated king. I have no options. Leaning to the left hurts. To the right hurts. Sitting on the chair hurts. The couch hurts. In fact, many people with sitting disabilities stand up to relax. For myself, standing takes temporary pressure off the lower spine, but within 10 minutes, the pain reappears in a different area of the back. Lying down will only help when I lie on a decent mattress, but those don’t exist on trains and busses, or in movie theaters. In fact, any form of transportation worries me before I even start the trip because I know the pain and discomfort that awaits me. Whether it’s running a simple errand or taking an extended trip, my anxiety begins in the planning stages, anticipating the inevitable pain. But I must get from place to place to live, so what are my options? Wherever I go, I am the checkmated king.
Most people have never heard of sitting disability, despite the fact that “as much as 80% of the population will experience a back problem at some time in their lives,” according to the American Chiropractic Association.
Basically, it works like this: it hurts when I sit.
I have found it difficult to explain that simple concept to friends, family, and doctors. In the past, this had prevented me from getting the help I need. In upcoming blogs, I will give examples of how I live and get around, as well as explain why I tell my friends it’s dinner OR a movie, not dinner AND a movie.
MY SITTING DISABILITY
Sitting disabilities are a symptom of another underlying condition. For myself, I have two issues at play. I attribute 80% of my pain to sciatica, the pinching of the sciatic nerve, which comes out of the spinal cord and down the leg. When I sit down, a sharp jab shoots down my leg and is relieved only when I stand up or lie down.
The other 20% is a dull and constant pain that grows over my lower back. This pain, when activated, won’t be relieved by standing, at least not right away. It resides where the lower back meets the pelvis, or at the L5 and S1 vertebrae in the spine, where those two vertebrae were surgically fused into one in 2010. This surgery reduced my sciatic pain for a couple of years, but did not nothing to reduce the low back pain. Because I’ve suffered longer from low back pain, I have a higher level of pain tolerance for low back pain than I do for sciatica.
As a result of the L5-S1 fusion, I developed overactive bladder (I now carry a catheter around with me — I’ll have more on this crazy nexus in future blogs). I was also diagnosed with fibromyalgia two years later, but it cannot be determined if it was related to the surgery or not. And as if that weren’t enough, how’s this for a strange coincidence. I was diagnosed with bipolar disorder the same year as the surgery, 2010.
I have noticed a trend on online forums that people with a sitting disability seem to be diagnosed with two or more illnesses, not just one. I am not clear on the connection between my three diagnoses (overactive bladder, fibromyalgia, and bipolar disorder) other than all three were originally misdiagnosed.
I am always asked, “What did you do to your back?” I explain that there was no injury, accident, or fall. Just sitting at a computer and commuting to work was the trigger. The pain from sitting grew worse and worse, and nobody could explain to me why. Having heard that question countless times, I had become sick of answering it, so I came up with some better answers:
1. I passed out on Mt. Everest and the Sherpa tried to carry me, but I was too heavy and he dropped me down the side of the mountain.
2. I was a finalist in the Find the Next Bruce Lee contest on a reality TV show. Lost by one point.
3. I was a backup dancer for Taylor Swift and twisted too fast during “Blank Space.”
For me, sitting disability equals chronic pain, because I have to sit wherever I go. That is how the world is designed. Chairs are in the restaurant, train, bus, plane, doctor’s office. And of course, at the computer. I didn’t use it only for my career as a programmer, but also for writing and using social media. As I look back, trying to figure out what happened when the sitting disability started, I remember being 21 years old. I would drive an hour to my job, work eight hours as a programmer, drive an hour back, and then spend many more hours sitting for my hobby, composing and recording music.
Since then, I have tried many treatments, including various pain medications, physical and occupational therapy, massage, chiropractic care, acupuncture and dry needling, acupressure, steroid injections, and biofeedback. I received many diagnoses, some which contradicted the previous diagnoses. I can bear the pain if I understand the cause of the problem. More than a cure, I long for a diagnosis. It was disappointing for me whenever the doctor looked at my MRI and said, “Good news. Everything is all right.” No, Doctor, it is not.
When people hear the word “disability,” they automatically think of a wheelchair, because it is the most visible of the disabilities. Next might come the visualization of a man with a cane or a woman doing sign language. In a Facebook group of people with sitting disability, I asked a controversial question. Would you rather:
1. Be in a wheelchair for the rest of your life, but not in physical pain, or
2. Have a sitting disability with chronic pain for the rest of your life, but nobody would know?
My very unscientific survey seemed at first glance to be 75% for A and 25% for B. I personally would choose A. I asked this survey question to a group of people who suffer from chronic pain every day. The explanations that came back with the individuals’ responses showed the difference between physical pain versus the pain of shame. I would like to see the same question posed to a greater cross section of the population, including healthy people. My guess is that healthy people would shiver at the thought of being in a wheelchair but not be aware that chronic pain would affect their lives so much. I only make this comparison to show how much of disability that chronic pain is.
The world accommodates and accepts the use of wheelchairs, but it does not accommodate sitting disabilities. I feel like a weirdo standing up at a restaurant while everybody else is sitting at the table, or standing in the movie theater along the side, while everybody steals glances at me and whispers, “What is he doing there?” (I will be posting more about the shame aspect of having a sitting disability.)
Those who know me may be wondering why I say I cannot sit, when they have seen me sit many times. Truth is, I can sit, but only for a limited period of time, usually no more than 20 minutes. After I sit, I feel fine for two seconds, and then the marathon begins. In first place is sciatica shooting pain down my left leg, followed in second place by the dull ache that grows in my lower back. It’s like a game: How much pain can I endure before I give up and stand? Others whose sitting disability is worse would not even make it that far; they cannot sit at all.
In 2007, the National Fibromyalgia and Chronic Pain Association (NFCPA) launched “The Fibromyalgia Clothespin Challenge: Awareness at Your Fingertips,” asking people to put a clothespin on their finger and to hold it there for 30 minutes. It was much harder than most people thought. At first, the clothespin is easy to handle, but then the pain creeps up slowly and grows. The NFCPA asked for a $5 donation for each minute under 30 that people were unable to hold the clothespin. Then they asked people to imagine if they could not remove the clothespin, ever. Starting to get the picture?
Fibromyalgia has a brain of its own and picks a new area of my body to torture every day, regardless of whether I’m sitting or not. One day it’s my foot, then it’s my shoulder, then it’s my hip. My chronic pain started in the low back from sitting, and then graduated to all over my body. Chronic, by definition, means long-lasting. It’s not like breaking your arm or getting a tattoo or giving birth. You can’t focus your mental energy on “bearing the pain until it’s over.” With chronic pain, there is no “over.”
A sitting disability will not go away until you stand up or lie down. Sitting is everywhere, and is expected in most situations. I believe sitting disability is a chronic illness, and as such, it should be accommodated everywhere, the same way there is ramp access for the wheelchair-bound.
In my former IT position, I didn’t have a choice to stand up or lie down. The stand-up desk was a new phenomenon. Then I started flying to clients all over the world, which became increasingly more difficult as time went on. My own theory is that this work turned my acute pain (only when I sit) into chronic pain (permanent, fibromyalgia). The chronic pain was like compound interest over time. I had X amount of pain on Monday. By Tuesday, instead of my pain balance going back to zero, it rolled over. I accrued interest on my pain. Sitting for an hour and then taking a 10-minute break brought temporary relief (a slight withdrawal from my pain account, to exhaust this metaphor), but did not reset the pain levels. Every day was a struggle to push it just one hour longer.
Although I don’t push it as hard as I did back then, I still struggle to get through the day. Others with sitting disabilities do as well. There is little literature written about sitting disability and the community is underserved. I hope this blog opens up the dialogue and encourages others to tell their stories.