Having a sitting disability ain\u2019t easy. But having a spouse, parent, friend, or sibling with a sitting disability is no picnic either.<\/p>\n\n\n\n
All of a sudden, the person you care about has all sorts of new, weird rules about what they can and can\u2019t do. They scour Google for photos of restaurants before they agree to go. They don\u2019t like to travel. A visit requires a trunk full of specialized equipment, and maybe a palm full of pain pills. Their physical therapy routine is their new favorite hobby.<\/p>\n\n\n\n
I\u2019ve been fortunate enough to have many caring, supportive people by my side as I learned to accept, and cope with, this new normal. They had their own learning curve. Even the best of intentions don\u2019t automatically translate to helpful action.<\/p>\n\n\n\n
This list is meant to give well-meaning people practical ways to support their loved one with a sitting disability. To create it, I bolstered my own views with sage advice solicited from the Sitting Disability Facebook group<\/a>.<\/p>\n\n\n\n This tops the list of anyone with a chronic illness.<\/p>\n\n\n\n I know<\/em> it\u2019s tempting. I know<\/em> you want to help. You\u2019d be a cruel friend if you wanted me to keep suffering. You want to be part of the solution.<\/p>\n\n\n\n You\u2019ve probably heard of a promising treatment, and you feel an obligation to bring it up. So you say, \u201cHave you tried yoga\/essential oils\/meditation\/CBD\/acupuncture\/etc.?\u201d<\/p>\n\n\n\n \u2026Do not expect a geyser of gratitude.<\/p>\n\n\n\n Most people with sitting disabilities have spent months or years living with their condition, researching it, talking to doctors and therapists, and trading stories with other sufferers. They have an established care team. They\u2019ve tried the remedies and treatments they\u2019re comfortable with.<\/p>\n\n\n\n And yet, every time we acknowledge our physical limitations, our conversation partner comes up with some new idea that they are sure is worth trying. They don\u2019t realize we\u2019ve gotten ten other suggestions already this week, and none of them were useful.<\/p>\n\n\n\n Instead of feeling cared for and supported, we\u2019re put on the defensive. We\u2019re forced to list our failed therapies, give you a crash course on our condition, and explain the possible benefits and drawbacks of your solution.<\/p>\n\n\n\n If our problem had an easy fix, we would have found it already. Unless you have a recognized expertise in treating our condition, or you are familiar with the specifics of our case, you are not likely to have any helpful insights.<\/p>\n\n\n\n Putting us on trial for our treatment decisions is not a good way to show your support. Sure, that\u2019s not your intention, but that\u2019s how it comes across.<\/p>\n\n\n\n So, if you\u2019re not supposed to suggest treatments, what are<\/em> you supposed to say when we mention our sitting disability?<\/p>\n\n\n\n Asking questions with the intention of gaining empathy and understanding will go over much better. Instead of \u201cHave you tried X?\u201d, try something like:<\/p>\n\n\n\n Perhaps you think these questions are cut from the same cloth as, \u201cDo you want my chiropractor\u2019s number?\u201d<\/p>\n\n\n\n But I assure you, the difference is real, and it is stark. It\u2019s the difference between being judged and being understood. Guess which one we prefer.<\/p>\n\n\n\n The only caveat here is that it\u2019s better to ask personal questions in a one-on-one setting. Some people with sitting disabilities are comfortable discussing their condition in public. But others will be embarrassed if they have to explain their disability in front of a group.<\/p>\n\n\n\n I don\u2019t know how many times I\u2019ve been offered a more comfortable chair, or one with more lumbar support, or one that reclines further.<\/p>\n\n\n\n Unfortunately, none of these options work for me. I have two choices: stand, or lie flat.<\/p>\n\n\n\n Other sitting-disabled people have different restrictions. Some do better with a chair that\u2019s softer or firmer than normal. Some can make do with a normal chair if they add donut cushions or ice packs. Some find a specific chair design acceptable. Some can only lie down on one side. Some don\u2019t have a single comfortable position, and need to keep moving. And some are still figuring out what works best for them.<\/p>\n\n\n\n The only way you will know what we need is by asking. ASK is the key word. Saying, \u201cDoes a recliner work for you?\u201d is better than, \u201cTry this chair, I put a new cushion on it.\u201d<\/p>\n\n\n\n I\u2019m still interested in movies, and plays, and parties, and getting together to hang out, but I often can\u2019t figure out how to make it work. My sitting disability means that I have extra logistical difficulties to sort out.<\/p>\n\n\n\n If you\u2019d like to get together, it helps if we can discuss the practical aspects of a plan up front. Even if the activity is not sitting-disability friendly, maybe we can find a workaround.<\/p>\n\n\n\n I have declined invitations to events because I couldn\u2019t figure out how to get there, or how to be comfortable once I got there. I have avoided making plans because they required too much effort. I have snuck out of events early because I couldn\u2019t find a way to be comfortable.<\/p>\n\n\n\n Usually, I don\u2019t announce these concerns. I just decline an invite, or choose not to extend one.<\/p>\n\n\n\n If someone invites me to a movie and I say no, I don\u2019t explain that I can\u2019t drive myself there. I don\u2019t explain that I don\u2019t feel like standing through a 3-hour show, and I don\u2019t explain that I need to go for a walk that evening instead. Usually, I say that I\u2019m busy, or that I can\u2019t make it.<\/p>\n\n\n\n You aren\u2019t responsible for anticipating or accommodating my every need, but simply bringing up the topic goes a long way.<\/p>\n\n\n\n For example, you could say, \u201cI\u2019d like to have my birthday party at [your favorite restaurant], and I\u2019m hoping you can come. How would that work with your sitting disability?\u201d Or, \u201cI want to have a board game night. Is there any way to make that comfortable for you?\u201d<\/p>\n\n\n\n A chronic illness leaves a trail of broken promises in its wake.<\/p>\n\n\n\n Understand that, no matter how excited we are about a plan, there will be days when our body overrules our brain. There will be times when our health forces us to cancel.<\/p>\n\n\n\n Sometimes a pain flare-up leaves us unable to get off the couch. Sometimes a health scare makes us prioritize a visit to a doctor. And sometimes depression (either clinical or situational) makes it difficult to leave the house.<\/p>\n\n\n\n We may come off as flaky. We may seem unserious, or inconsiderate. Please know that we are as disappointed as you are. Possibly more so, because this may have been our first, or only, social activity on this calendar page.<\/p>\n\n\n\n So when you make plans with us, build in a tolerance for failure. Maybe this means asking us to confirm our plans a few hours ahead of time, or only agreeing to go to museums\/restaurants\/conventions that you\u2019re comfortable visiting alone. Maybe it means establishing a Plan B, such as a Netflix marathon. It probably means you shouldn\u2019t buy us expensive, nonrefundable concert tickets.<\/p>\n\n\n\n Much of this article boils down to, \u201cJust ask us about our sitting disability!\u201d But there are times when we definitely do not want<\/em> to talk about our sitting disability.<\/p>\n\n\n\n I hope my sudden change of direction here doesn\u2019t give you whiplash.<\/p>\n\n\n\n In talking to people with sitting disabilities, I\u2019ve been struck by what a diverse lot we are. People with sitting disabilities run the gamut in terms of age, occupational background, geographic location, education level, political affiliation, and family situation. We have wildly different interests, personal philosophies, and personality types.<\/p>\n\n\n\n Disability is only a tiny sliver of our identity, and it\u2019s rarely the most interesting thing about us.<\/p>\n\n\n\n In group situations especially, most people with sitting disabilities prefer to talk about their (non-medical) accomplishments, opinions, and interests. Like any sane person, we prefer to talk about the things we love, rather than the things we\u2019ve learned to live with.<\/p>\n\n\n\n I just got a new sewing machine, and it does embroidery. I’m reading a book about the ancient Indo-Europeans<\/a>. I adore the costumes on Bridgerton<\/a> <\/em>and Victoria<\/em>.<\/a> Once the necessary accommodations for my sitting disability have been sorted out, I prefer to talk about these subjects.<\/p>\n\n\n\n So let us be people, not just diagnoses.<\/p>\n\n\n\n We aren\u2019t perfect, either in terms of managing our own disability, or in supporting others. You aren\u2019t perfect either.<\/p>\n\n\n\n But even if you\u2019ve violated (or chosen to ignore) every suggestion on this list, you can still make major points just by showing up. Every email, text, phone call, or visit, reminds us that you\u2019re still thinking about us, and you still care.<\/p>\n\n\n\n Just being around, and not giving up on us, is the best thing you can do.<\/p>\n","protected":false},"excerpt":{"rendered":" This list is meant to give well-meaning people practical ways to support their loved one with a sitting disability. To create it, I bolstered my own views with sage advice solicited from the Sitting Disability Facebook group.<\/p>\n","protected":false},"author":1,"featured_media":983,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[19],"tags":[17,189],"class_list":["post-981","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-sitting-disabilities","tag-sitting-disability","tag-support","post-archive"],"yoast_head":"\n1) Don\u2019t Offer Medical Advice<\/h2>\n\n\n\n
2) Ask Us Questions<\/h2>\n\n\n\n
3) Ask About Our Sitting\/Lying Preferences<\/h2>\n\n\n\n
4) Go Through the Logistics<\/h2>\n\n\n\n
5) Understand We Might Cancel<\/h2>\n\n\n\n
6) Treat Us Like More Than Just an Illness<\/h2>\n\n\n\n
7) Just Be There<\/h2>\n\n\n\n