Fourteen individuals responded. While that\u2019s not a huge number, it was enough to discover some commonalities and unearth some general trends.<\/p>\n\n\n\n
Length of Sitting Disability<\/h3>\n\n\n\n
I wasn\u2019t surprised to see that only one responded reported having a sitting disability for less than three years. My suspicion (which I have no data to support) is that someone with a recently manifested sitting disability would not be keen to use the phrase \u201csitting disability,\u201d nor to join an online support group, or take a survey.<\/p>\n\n\n\n I was surprised \u2013 and heartened \u2013 by the number of respondents who had a diagnosis. While there\u2019s no such thing as a good <\/em>sitting disability, there\u2019s a certain comfort in being able to apply a label to your condition. At the very least, it makes it easier to explain your condition to other people.<\/p>\n\n\n\n Spine and disk issues were by far the most common diagnosis. The second-most-common diagnosis was a write-in: Ehlers-Danlos syndrome (EDS). EDS is actually not a single disease, but a cluster of genetic conditions that affects connective tissues, and often leads to hypermobile joints and stretchy skin. People with EDS are predisposed to develop additional health problems. Interestingly, each survey respondent who selected EDS also had some kind of back condition.<\/p>\n\n\n\n The third most common condition was pudendal neuropathy, which is a catch-all term for a number of conditions that cause pain in the pudendal nerve (which runs between the anus and the genitals).<\/p>\n\n\n\n I have long suspected that most of the treatments I endured for back pain didn\u2019t help, and possibly made things worse. I have also heard whispered anecdotes of botched procedures that left patients in more pain than they started with, but I had no idea whether that was a common occurrence or a rarity. I included a question on the survey to find out.<\/p>\n\n\n\n Fortunately, the majority of respondents did not suffer as a result of medical procedures. But a sizeable minority (six out of fourteen respondents) answered either \u201cYes\u201d or \u201cIt\u2019s complicated.\u201d The results didn\u2019t help much to set my mind at ease.<\/p>\n\n\n\n Those who answered \u201cYes,\u201d or \u201cIt\u2019s complicated\u201d were asked for details. I had planned to summarize the answers, but I didn\u2019t trust myself to properly represent their experiences. So instead, I\u2019m reproducing the (anonymous) answers in their entirety.<\/p>\n\n\n\n Medical Procedures and Sitting Pain<\/strong><\/p>\n\n\n\n Please list any relevant details about the medical procedure you underwent, and how that affected your sitting pain. <\/p>\n\n\n\n 4 responses<\/em><\/p>\n\n\n\n I was curious to see if sitting pain fell into any discernable patterns beyond, y\u2019know, existing when a person sits down. So I asked about daily pain patterns.<\/p>\n\n\n\n I expected pain patterns to track with specific diagnoses, but this wasn\u2019t the case at all. Pain patterns seemed completely independent of the underlying cause. The most common answer was, \u201cMy pain level changes throughout the day depending on my activities.\u201d<\/p>\n\n\n\n Next, the survey asked, \u201cDo you have any pain triggers, besides sitting?\u201d Here, I did see a weak correlation between diagnosis and pain triggers, although there weren\u2019t enough respondents to draw conclusions for any condition except spine\/disc issues.<\/p>\n\n\n\n Four respondents with spine\/disk issues reported pain when they engaged in activities that compressed the spine (such as jumping, running, or carrying heavy things), while three respondents reported problems with bending or stooping.<\/p>\n\n\n\n There were no discernable patterns for those with EDS or pudendal neuropathy. I included a question about sitting tolerance, where I rather optimistically listed time periods of up to four hours.<\/p>\n\n\n\n It turns out that the maximum reported tolerance of any respondent was two hours \u2013 and only on a good day. Eleven respondents reported a tolerance of fifteen minutes or less.<\/p>\n\n\n\n I personally spend a lot of time whining about all the things I can\u2019t or won\u2019t do anymore, and I was curious to see whether any other sitting-disabled folks had miraculously found a way to carry on. In general, the answer is no.<\/p>\n\n\n\n The most difficult activities were traveling by airplane, and going to movies\/concerts\/plays. Going to restaurants and visiting friends were both more manageable prospects, although apparently neither one could be done on a lark.<\/p>\n\n\n\n I was surprised to see that traveling by car was ranked as one of the more manageable activities. Opinions on public transit were more scattered.<\/p>\n\n\n\n \u201cExercising\u201d was the activity that showed the greatest spread in difficulty rankings. Four respondents found it relatively easy to manage, which means that exercising was, on average, the easiest activity on the list for people to engage in.<\/p>\n\n\n\n Since that graph is tough to read, I\u2019m including a table as well.<\/p>\n\n\n\n Building this survey was a stab in the dark, as I had to guess which questions would solicit meaningful responses, and anticipate which answers participants might choose. But I left some questions open-ended, an acknowledgement that I do not know what I do not know.<\/p>\n\n\n\n One respondent summed the matter up succinctly \u2013 \u201cEverything\u201d. The major recurring theme among the answers was how much participants missed normal life.<\/p>\n\n\n\n Five respondents listed travel, whether it be road trips, or a quick run to the grocery store. Four missed being able to socialize with others. Concerts, festivals, movies, and even card games at the dining room table were now off-limits.<\/p>\n\n\n\n Three respondents missed being able to participate in athletic activities, while another three missed sitting itself. It turns out there isn\u2019t a sitting-disability-friendly alternative to lounging on the couch.<\/p>\n\n\n\n Perhaps my favorite answer was the pointedly specific, \u201cNot being harassed on transit by elderly people who don\u2019t believe I have a disability.\u201d I don\u2019t know why the elderly in this respondent\u2019s orbit are so curmudgeonly, but I certainly understand the difficulty of proving a disability to strangers when you\u2019re young and healthy-looking.<\/p>\n\n\n\n EDIT:<\/strong> The writer of this comment explained that she often needs to ride in the section of the subway reserved for elderly or disabled individuals. In order to ride comfortably, she arranges her things across two seats. Although she carries a button that reads, “My Disability Is Invisible,” a handful of elderly riders have taken it upon themselves to vigorously defended an empty seat from her encroachment.<\/p>\n\n\n\n One general category clearly stood out \u2013 Travel<\/strong>. Five respondents missed driving, two missed being able to fly comfortably in coach, and two missed travel in general.<\/p>\n\n\n\n One participant missed work<\/strong> (and the financial security that comes with it), while another had solved the puzzle by insisting their workplace provide them with a reclining chair.<\/p>\n\n\n\n Some of the responses were even more modest. \u201cAnything would be a massive bonus,\u201d wrote one participant, while another only asked to, \u201cBe free of pain.\u201d<\/p>\n\n\n\n I often get annoyed when well-meaning bystanders try to offer up a solution to my back problems, without really understanding my problem in the first place. But I still want solutions, and figured maybe my fellow sufferers had stumbled upon coping mechanisms that hadn\u2019t occurred to me.<\/p>\n\n\n\n This was another question where I expected the answers to correlate to the underlying condition, but again I was wrong.<\/p>\n\n\n\n It turns out exercise<\/strong> was the most common therapy used. Four respondents went to physical therapy (or physiotherapy, depending on the country). Others walked, swam, or just kept moving. One reported that bracing helps. (Although a definition was not provided, I assume \u201cbracing\u201d refers to the strategy of stiffening the torso muscles during certain movements to protect the spine.)<\/p>\n\n\n\n Five respondents reported that medications<\/strong> were part of their treatment toolkit. The meds used included NSAIDs, opioids, Lyrica, baclofen, and GABA. One resourceful individual used, \u201cEvery pain med known to medical science.\u201d Two respondents relied on medical devices \u2013 one on a spinal cord stimulator, the other one on a dorsal root ganglion spinal stimulator.<\/p>\n\n\n\n Three respondents reported using heat and ice<\/strong>. Others used alternative treatments<\/strong>, like chiropractic sessions, meditation, and massage. One used an acupressure mat, which I only just learned was a thing.<\/p>\n\n\n\n Several respondents emphatically noted that not sitting down<\/strong><\/em> was key to managing their pain, an observation which should surprise no one.<\/p>\n\n\n\n It\u2019s nice when you can throw money at a problem and make it go away. The products that sitting-disabled respondents reported using ranged from the high-end (such as this super-cool looking Varier Move chair<\/a>, a custom-made flat wheelchair, and an electric standing scooter), to the everyday (such as heat and ice packs, and a laptop lap tray from IKEA).<\/p>\n\n\n\n Three respondents reported using zero-gravity chairs, while two others used reclining chairs. Two respondents Cushioned Their Assets<\/a>.<\/p>\n\n\n\n Four participants used standing desks, although in one case, \u201cstanding desk\u201d equaled \u201chigh counter.\u201d One individual reported rigging up their own standing desk. Details were not given, but I\u2019ve personally rigged up standing desks using ironing boards, stacked suitcases, window ledges, and a coffee table with sawed-off legs set on top of a regular desk.<\/p>\n\n\n\n Other products included:<\/p>\n\n\n\n![\"\"](\"https:\/\/myuprightlife.com\/wp-content\/uploads\/2020\/07\/How-long-have-you-had-a-sitting-disability.png\")
<\/figure>\n\n\n\nDiagnosis<\/h3>\n\n\n\n
![\"\"](\"https:\/\/myuprightlife.com\/wp-content\/uploads\/2020\/07\/Do-you-have-a-diagnosis.png\")
<\/figure><\/div>\n\n\n\n![\"\"](\"http:\/\/myuprightlife.com\/wp-content\/uploads\/2020\/07\/image.png\")
<\/figure>\n\n\n\nMedical Procedures & Sitting Pain<\/h3>\n\n\n\n
![\"\"](\"https:\/\/myuprightlife.com\/wp-content\/uploads\/2020\/07\/Did-a-medical-procedure-cause-or-exacerbate-your-pain.png\")
<\/figure>\n\n\n\nPain Patterns<\/h3>\n\n\n\n
![\"A](\"http:\/\/myuprightlife.com\/wp-content\/uploads\/2020\/07\/image-1.png\")
<\/figure>\n\n\n\nPain Triggers<\/h3>\n\n\n\n
Other reported pain triggers include:<\/p>\n\n\n\nSitting Tolerance<\/h3>\n\n\n\n
![\"\"](\"https:\/\/myuprightlife.com\/wp-content\/uploads\/2020\/07\/What-is-your-sitting-tolerance-1024x409.png\")
<\/figure>\n\n\n\nCapabilities<\/h3>\n\n\n\n
![\"\"](\"http:\/\/myuprightlife.com\/wp-content\/uploads\/2020\/07\/image-2.png\")
<\/figure>\n\n\n\n![\"This](\"http:\/\/myuprightlife.com\/wp-content\/uploads\/2020\/07\/image-3-1024x348.png\")
<\/figure>\n\n\n\nLong Form Questions<\/h2>\n\n\n\n
What do you miss most about your pre-sitting disability life?<\/h3>\n\n\n\n
If you could solve any single problem related to your sitting disability, what would it be?<\/h3>\n\n\n\n
Solutions<\/h2>\n\n\n\n
Which treatments or therapies help you manage your pain?<\/h3>\n\n\n\n
Are there any sitting-pain-related products that you find indispensable?<\/h3>\n\n\n\n
![\"\"](\"https:\/\/myuprightlife.com\/wp-content\/uploads\/2020\/07\/What-is-your-gender.png\")
<\/figure>\n\n\n\n![\"\"](\"https:\/\/myuprightlife.com\/wp-content\/uploads\/2020\/07\/What-is-your-age.png\")
<\/figure>\n\n\n\n![\"Pie](\"http:\/\/myuprightlife.com\/wp-content\/uploads\/2020\/07\/image-4.png\")
<\/figure><\/div>\n\n\n\n