{"id":825,"date":"2021-01-12T11:21:46","date_gmt":"2021-01-12T16:21:46","guid":{"rendered":"http:\/\/myuprightlife.com\/?p=825"},"modified":"2022-03-21T09:43:14","modified_gmt":"2022-03-21T13:43:14","slug":"theres-a-chronic-pain-narrative-and-im-off-script","status":"publish","type":"post","link":"https:\/\/myuprightlife.com\/index.php\/2021\/01\/12\/theres-a-chronic-pain-narrative-and-im-off-script\/","title":{"rendered":"There\u2019s a Chronic Pain Narrative, and I\u2019m Off Script"},"content":{"rendered":"\n

Once, I went to an offsite meeting and spent two days leaning against a pillar for support. During a break, a participant from another company talked to me about it.<\/p>\n\n\n\n

\u201cI have a back condition,\u201d I said, by way of explanation.<\/p>\n\n\n\n

She nodded, and looked at me with sincerity. \u201cI\u2019m sorry you\u2019re in pain,\u201d she said.<\/p>\n\n\n\n

I was touched by her empathy, but also baffled. I was standing to avoid<\/em> pain, so her sympathy was misplaced.<\/p>\n\n\n\n

I could have explained myself to this woman. Sitting<\/em> was the problem, standing was fine. I could have asked her to defer her sympathy until I was seated.<\/p>\n\n\n\n

Except no one would offer their sympathy to a sitting person. Because, for most people sitting<\/a> is equated with comfort.<\/p>\n\n\n\n

I could have explained this, but I didn\u2019t. I wasn\u2019t likely to work with her after this meeting. She didn\u2019t need to know my quirks. And I didn\u2019t want to punish her with a lecture for this attempt at kindness, so instead I said, \u201cThank you.\u201d<\/p>
<\/p>\n\n\n\n

I often feel myself<\/strong> hovering in this strange sort of nether region just outside of people\u2019s expectations.  Nowhere is this clearer than in doctors\u2019 offices. Early on, I used to correct my doctors when they mentioned my back pain. \u201cIt\u2019s sciatica<\/a>,\u201d I\u2019d say. Or, \u201cIt\u2019s my legs<\/em>.\u201d<\/p>\n\n\n\n

\u201cRight,\u201d They\u2019d say, as annoyance flashed across their face. \u201cBut sciatica is usually caused<\/em> by a back problem, so it\u2019s considered back pain.\u201d<\/p>\n\n\n\n

It was as if I\u2019d interrupted to say that a thumb is not a finger. They were irritated by my hypercorrectness. I was irritated by their misleading terminology.<\/p>\n\n\n\n

After a beat, they\u2019d go on to say whatever it was they were saying about back pain.<\/p>\n\n\n\n

Talking about treatments was even more frustrating. \u201cWe can talk about pain medicine,\u201d they would say. Or, \u201cLet me refer you to a pain clinic.\u201d<\/p>\n\n\n\n

\u201cPain<\/em> isn\u2019t my problem,\u201d I\u2019d say. \u201cCramps <\/em>are my problem. And I don\u2019t see how pain meds will help with cramps.\u201d Or, \u201cWhat do you think about a muscle relaxant?\u201d Or, \u201cCould I get a sleeping pill?\u201d<\/p>\n\n\n\n

This correction never accomplished anything. The doctor would finish outlining my pain management options, and I\u2019d be left wondering what I was supposed to do about these stupid cramps<\/em>.<\/p>
<\/p>\n\n\n\n

Admittedly, my inability<\/strong> to sit is an odd sort of limitation. Sick people are supposed to rest. They\u2019re supposed to stay off their feet. Besides, I look so awkward<\/em> when I\u2019m trying to be comfortable. Gracious people can\u2019t help but try to correct the situation.<\/p>\n\n\n\n

\u201cCan I get you a chair?\u201d The waitress said. She oozed concern. Her eyes widened and the corners of her mouth tugged down on my behalf.<\/p>\n\n\n\n

\u201cWhat? No, I\u2019m okay,\u201d I said, gesturing at the chair right beside me. \u201cI have a back problem. It\u2019s more comfortable to stand.\u201d<\/p>\n\n\n\n

\u201cAre you sure? I can get you another chair.\u201d<\/p>\n\n\n\n

\u201cNo, I\u2019m fine. Thank you,\u201d I said.<\/p>\n\n\n\n

The waitress nodded, unsatisfied, and disappeared into the kitchen.<\/p>\n\n\n\n

\u201cThey really want you to have a chair,\u201d my then-boyfriend said.<\/p>\n\n\n\n

\u201cWelcome to North Dakota. They\u2019re really concerned about you.\u201d We both picked up our chopsticks, and dug into our stir fries.<\/p>\n\n\n\n

\u201cExcuse me, I brought you a chair,\u201d a waiter \u2013 a man this time \u2013 was indeed hauling a padded chair out for me.<\/p>\n\n\n\n

\u201cOh! Um, thanks, but I\u2019m okay,\u201d I insisted, gesturing at my chair again. \u201cI just have a back problem. I\u2019m really comfortable standing.\u201d<\/p>\n\n\n\n

\u201cAre you sure<\/em>?\u201d<\/p>\n\n\n\n

\u201cYes. But thank you. It was nice of you to be so concerned.\u201d<\/p>\n\n\n\n

He eyed me doubtfully. \u201cYou\u2019re sure you\u2019ll be okay like that?\u201d<\/p>\n\n\n\n

\u201cPositive. I\u2019m used to it.\u201d<\/p>\n\n\n\n

He frowned as he dragged the chair off with him.<\/p>
<\/p>\n\n\n\n

When I started making<\/strong> appearances at the office after my surgery, I felt caught in a narrative trap. Well-meaning coworkers would stop by my desk. \u201cHow\u2019re you feeling?\u201d They\u2019d ask, a chipper smile pasted on their face.<\/p>\n\n\n\n

Confronted with the question, I realized there was right answer and a wrong answer. The right answer was, \u201cOh my gosh, SO much better! It\u2019s like night and day! I should\u2019ve had this surgery ages ago.\u201d<\/p>\n\n\n\n

The real answer \u2013 the wrong<\/em> answer \u2013 was, \u201cThe surgery didn\u2019t do anything. My nerve is still horrible.\u201d<\/p>\n\n\n\n

Stuck between these options, I carefully picked my way around the truth. \u201cI feel a little better,\u201d I\u2019d say, which was true, because I was sleeping again. \u201cBut my doctor says it can take a long time for nerves to heal. So, we\u2019ll see.\u201d<\/p>\n\n\n\n

They would nod, slightly crestfallen, and say something polite. Like, \u201cIt\u2019s good to have you back.\u201d Or, \u201cRecovery can take a while. Hang in there.\u201d<\/p>
<\/p>\n\n\n\n

Illnesses are supposed<\/strong> to follow a story arc. You get sick, you get treated, you get better.<\/p>\n\n\n\n

Our social scripts are based on this assumption. If someone gets sick, you say, \u201cDrink lots of fluids.\u201d Or, \u201cDo you want my urologist\u2019s number?\u201d Or, \u201cDo you want some CBD oil?\u201d<\/p>\n\n\n\n

If someone just saw a doctor, or went to the emergency room, or got carted away in an ambulance, you say, \u201cWhat did the doctor tell you?\u201d Or, \u201cHow did the surgery go?\u201d Or, \u201cDid they put you on any meds?\u201d<\/p>\n\n\n\n

And once the crisis is over, and the care plan is established, you say, \u201cTake it easy.\u201d Or, \u201cGlad you\u2019re doing okay.\u201d Or, \u201cFeel better soon!\u201d<\/p>\n\n\n\n

It\u2019s nice. It\u2019s neat. And everyone knows what to say.<\/p>\n\n\n\n

Except, sometimes illnesses depart from this pattern. And then what?<\/p>\n\n\n\n

If someone says, \u201cI\u2019ve seen dozens of doctors, and given half my weight in blood. And no one can tell me what\u2019s wrong.\u201d<\/p>\n\n\n\n

You say, \u201c________________________.\u201d<\/p>\n\n\n\n

If someone says, \u201cI went to the emergency room, and the doctors couldn\u2019t find anything wrong with me.\u201d<\/p>\n\n\n\n

You say, \u201c________________________.\u201d<\/p>\n\n\n\n

If someone says, \u201cMy surgery didn\u2019t work, and neither did any of the other treatments. I\u2019m at the end of my rope.\u201d<\/p>\n\n\n\n

You say,\u00a0 \u201c________________________.\u201d<\/p>\n\n\n\n

I\u2019ve been that someone. I\u2019ve said those things. And even I don\u2019t know how to fill in the blanks.<\/p>
<\/p>\n\n\n\n

The irony is that<\/strong> I still find myself on the other side of this trap. I\u2019ll be talking to someone with a chronic illness. Perhaps they\u2019ve exhausted all their treatment options. Perhaps they have a treatment regimen they\u2019re perfectly satisfied with. Perhaps they\u2019ve resigned themselves to living with an unnameable thing.<\/p>\n\n\n\n

I\u2019ll listen, and bite my lips to keep my first thoughts from slipping out. Have you read <\/em>Back Mechanic<\/a>?<\/em> Or, Did they mention fibromyalgia?<\/em> Or, I hope you feel better in the spring!<\/em><\/p>\n\n\n\n

Assuming the role of armchair diagnostician, or helpful apothecary, or sunshine dispenser, is a wonderful temptation. It feels<\/em> altruistic.<\/p>\n\n\n\n

I can help this person<\/em>, I think. I can solve their problem!<\/em><\/p>\n\n\n\n

I do not think, I am in love with my own cleverness<\/em>. Or, this conversation is too depressing for my own liking.<\/em> If these sentiments are part of the filter that brings thoughts from mind to mouth, they blend in well enough to overlook.<\/p>
<\/p>\n\n\n\n

I feel the words<\/strong> bubble up. Are you sure you want to do the surgery?<\/em> Or, At least your grandkids live nearby!<\/em> Or, Maybe try weightlifting?<\/em><\/p>\n\n\n\n

I keep my teeth together, and cast about for alternatives. \u201cI\u2019m sorry,\u201d I say. Or, \u201cThat sucks.\u201d Or, \u201cIt sounds like you\u2019re doing your best.\u201d<\/p>\n\n\n\n

These phrases land awkwardly. They\u2019re off script. The rhythm of call-and-response is interrupted.<\/p>\n\n\n\n

But, I remind myself, maybe the script wasn\u2019t right in the first place.<\/p>\n","protected":false},"excerpt":{"rendered":"

Illnesses are supposed to follow a narrative arc. You get sick, you get treated, you get better. Except, sometimes chronic pain departs from this pattern.<\/p>\n","protected":false},"author":1,"featured_media":826,"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":[20,19],"tags":[156,157,17],"class_list":["post-825","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-sciatica","category-sitting-disabilities","tag-chronic-pain","tag-pain-narrative","tag-sitting-disability","post-archive"],"yoast_head":"\nThere\u2019s a Chronic Pain Narrative, and I\u2019m Off Script | My Upright Life<\/title>\n<meta name=\"description\" content=\"Illnesses are supposed to follow a narrative arc. 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Is everything okay?\" \"Sick Person: Eh, my sciatica is acting up again.\" That's as far as the script's gotten."},{"@type":"BreadcrumbList","@id":"https:\/\/myuprightlife.com\/index.php\/2021\/01\/12\/theres-a-chronic-pain-narrative-and-im-off-script\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/myuprightlife.com\/"},{"@type":"ListItem","position":2,"name":"There\u2019s a Chronic Pain Narrative, and I\u2019m Off Script"}]},{"@type":"WebSite","@id":"https:\/\/myuprightlife.com\/#website","url":"https:\/\/myuprightlife.com\/","name":"My Upright Life","description":"Living with sciatica and a sitting disability","publisher":{"@id":"https:\/\/myuprightlife.com\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/myuprightlife.com\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-US"},{"@type":"Organization","@id":"https:\/\/myuprightlife.com\/#organization","name":"My Upright Life","url":"https:\/\/myuprightlife.com\/","logo":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/myuprightlife.com\/#\/schema\/logo\/image\/","url":"https:\/\/myuprightlife.com\/wp-content\/uploads\/2020\/05\/flamingo_large_circle.png","contentUrl":"https:\/\/myuprightlife.com\/wp-content\/uploads\/2020\/05\/flamingo_large_circle.png","width":1920,"height":1920,"caption":"My Upright Life"},"image":{"@id":"https:\/\/myuprightlife.com\/#\/schema\/logo\/image\/"}},{"@type":"Person","@id":"https:\/\/myuprightlife.com\/#\/schema\/person\/e3cba69c76db0809f5c4e8e12ef57074","name":"Krista","image":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/myuprightlife.com\/#\/schema\/person\/image\/","url":"https:\/\/secure.gravatar.com\/avatar\/e1c18ebecba5f941e169ef8bc907852b375bd54dcf8eb55748d74e1406b7e938?s=96&d=mm&r=r","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/e1c18ebecba5f941e169ef8bc907852b375bd54dcf8eb55748d74e1406b7e938?s=96&d=mm&r=r","caption":"Krista"}}]}},"jetpack_sharing_enabled":true,"cc_featured_image_caption":{"caption_text":"This script would be SO much easier to edit if it was written with a word processor.","source_text":"","source_url":""},"jetpack_featured_media_url":"https:\/\/myuprightlife.com\/wp-content\/uploads\/2021\/01\/chronic-pain-script.jpg","_links":{"self":[{"href":"https:\/\/myuprightlife.com\/index.php\/wp-json\/wp\/v2\/posts\/825","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myuprightlife.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/myuprightlife.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/myuprightlife.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/myuprightlife.com\/index.php\/wp-json\/wp\/v2\/comments?post=825"}],"version-history":[{"count":7,"href":"https:\/\/myuprightlife.com\/index.php\/wp-json\/wp\/v2\/posts\/825\/revisions"}],"predecessor-version":[{"id":1147,"href":"https:\/\/myuprightlife.com\/index.php\/wp-json\/wp\/v2\/posts\/825\/revisions\/1147"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myuprightlife.com\/index.php\/wp-json\/wp\/v2\/media\/826"}],"wp:attachment":[{"href":"https:\/\/myuprightlife.com\/index.php\/wp-json\/wp\/v2\/media?parent=825"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/myuprightlife.com\/index.php\/wp-json\/wp\/v2\/categories?post=825"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/myuprightlife.com\/index.php\/wp-json\/wp\/v2\/tags?post=825"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}