About My Body

(Note: soon after I started writing this this morning, I realized that it’s heavily influenced by BFP and Jess’s (Re)Thinking Walking series at Flip Flopping Joy. I’ve had a troubled relationship with walking for a few years, but their essays helped me crystallize a lot of thoughts that were amorphous, and I doubt I would have come to this essay without them.)

About five years ago, I worked as a computer services aide at a public library. Most of my job consisted of running around the main branch fixing problems and installing software. Sometimes the running around was virtual – we had a program called VNC, which allowed us to freak out librarians by manipulating their computers remotely – but more often than not, it was physical. I’d run around. Well, walk. I loved this job because it allowed me to move, exercise, be active, interact with people, hide out occasionally in the stacks with a book as software installed or there was a lull in demand. So one day I was walking around, carrying a box of floppy disks from one project to another, when on the mezzanine between two floors, I felt a sudden stabbing pain in my hip.

I stopped, stunned. I’d never felt pain like that in my life. Holy shit, was it strong! What the fuck!?

But by the time I’d even registered it, it was gone, so I kept walking. About ten minutes later, I felt it again. It was so absurd that I actually laughed out loud. It was perversely fascinating.

That day, my hip felt tender for awhile but it went away by nightfall. I didn’t even think to mention it to my boyfriend. Over the next few days, though, it started to come back gradually – not a sudden, stabbing pain anymore, but rather a sharp ache, like a cramped muscle or a joint that needed popping. It would almost reach a crisis point and then fade. I’d always had back problems, so I assumed it’d go away on its own, but it didn’t – instead, over the next few weeks, it got so bad that I began to have trouble walking. Not that I stopped walking; after all, I didn’t think anything was actually wrong. I considered myself kind of a sissy about pain. The limping? Oh, whatever, I figured everyone got that sometimes. Every day I’d walk downtown to meet my boyfriend for lunch and ignore the stabbing, aching, and squeezing that was going on around my tailbone. I’d have to stop several times to rest it and rub it (not that either had any effect). I still rode my bike. I refused to take pity on my pelvis. I kept pushing it to do whatever I felt like doing – except, as the pain got worse and worse, I began pushing it just to behave normally.

When my boyfriend finally suggested that we go to the emergency room, we went to a hospital with a confusing parking situation and ended up parking on the street a good quarter mile away. By then, I could barely walk at all. Every step killed me and I had to lean on him for support. But what’s wild is that it didn’t occur to me for a second to just ask him to drop me off in front of the lobby. Why, when I could just walk? (Except the whole point of going to the ER was that I couldn’t walk!) So we parked and it took us about half an hour to get to the lobby. I held onto his arm and panted as I shuffled and hopped, trying to get there without putting any weight on the bad spots, which had a habit of jumping up and down, from the front to the back, and from leg to leg.

I didn’t mention that this was in a city with a high working class and impoverished population, so when we got there, there were easily fifty people waiting. I went to triage and, when they showed me the smiley-face scale and asked me to rate my pain, I told them it was a 6 usually, but a 9 at the worst moments (I thought that if I said 10 they’d assume I was exaggerating). Then a man fell out of his wheelchair and had a seizure on the floor. “It’s going to be a few hours,” the nurse said.

So I went home and tried again the next morning. Three hours. I felt bad for calling in sick. I limped through three waiting rooms, and when I finally saw a doctor, he told me that the problem wasn’t my hip, but my back, which I’d apparently sprained. He gave me a prescription for Ibuprofen, told me to ice it, and sent me home. (Later I’d receive a bill for $157, which my dad offered to pay. But there was a mix-up, and he never got the first bill or the second or the third or the notice from the collection agency, and three years later I had to find a cosigner for my apartment in grad school.)

The Ibuprofen worked… for a little while. But for the next several months, the pain was always in the background. It didn’t reach a crisis point again – I never had trouble walking – but I was always aware of my movement. There was always a tightness, a discomfort. I was bothered by it, but I didn’t bother to see a doctor. I’d sprained it. This was probably normal after a sprain.

But about a year later, I had my next major flare-up. This time, though, I was angry about it, and I started taking that anger out on the pain itself by rubbing my back too hard, or trying to pop the joint, or doing stretches that felt good for a few moments but definitely were not therapeutic. Because, hey, being gentle sure as crap didn’t work, so why not be rough? Well, you can imagine how that went. It started hurting more intensely and more often: sitting the wrong way, then lying the wrong way, then moving the wrong muscle, then moving any muscle too hard aggravated it. The more constrictive it got, the angrier I became. After a couple of weeks everything I did seemed to be wrong. “There’s this secret thing I want you to be doing,” my back seemed to cackle, “and I only want you to do that one specific thing, and everything else is off limits!” It finally culminated in a huge catastrophe – the pain flared one night into something uniformly unbearable, a 10 that didn’t let up. I lay on my boyfriend’s bed crying and gasping, but breathing made it worse and breathing abnormally made it extra worse, so I could feel myself injuring it more and more by venting the frustration that my brain needed to vent. I was literally paralyzed. My nose was stuffed but I couldn’t blow it. I coughed and it felt like I’d blown my fucking legs off. The worst was when I had to pee. I’ll spare you the details, but suffice it to say that it took about fifteen minutes. (My boyfriend offered to carry me, but that hurt, too.) When I lay back down, I felt the bizarre urge to laugh, just like I had that first time. It was just absurd. It was just unbelievable. And it would take me years to realize how unfathomable it was that throughout the several hours I spent crying and hurting on that bed, it didn’t occur to either of us to take me to a damn hospital.

I had lunch with my mom a couple of days later and broke down when she asked me how I was. She gave me the name of her GP, who told me that it was a strain. I’d strained my back. To this day, I’m not even sure she heard me correctly when I told her the first guy said it was a sprain, and it still bothers me to think that maybe she made the wrong diagnosis because she was careless and just went off of what she thought this other doctor said. But she seemed to know what she was doing. She gave me anti-inflammatories and muscle relaxers and a referral to a physical therapist.

And the medication and physical therapy worked… for awhile. When the physical therapist first showed me some stretches, they worked like magic. Like magic! I’d lie down, unable to walk, and when I got up after the stretch, I could walk with no pain at all! Hallelujah! Let’s hear it for a quick fix!

But the more I did them, the less potent they got, until by the time I had my next major flare-up a few months later, they did nothing at all. I was in grad school now, and I’d walked to the university library one day to discover that I couldn’t walk back. So I lay down on the lawn and, intensely self-conscious, did the stretches with 30,000 undergrads going about their business around me. And when I got up, it still hurt, and I still couldn’t walk, so I limped and shuffled home. I didn’t call anyone to help me out or give me a ride. This was my first semester, see, and I didn’t have any close friends. Besides, they’d think I was a drama queen.

The exercises the physical therapist had shown me were meant to strengthen my abdominal muscles. Apparently this kept happening to me because they were too weak, or maybe I needed to make them stronger than average to keep it from happening again – I was never really clear. But there were so many of them, and I was supposed to do so many sets of each so many times a day, that I quickly gave up. “Let me show you another one,” he kept saying. “Oh, and here’s another.” Was I really supposed to do all of these? Were some better than others? Was I supposed to pick the ones I liked? I never had the courage to ask. And besides, when I tried to do them while I was still injured, they just made it worse. The trick, it seemed, was to wait until I was healed and then do them as a preventative measure. But how could I ever heal when my abs were too weak? It seemed like a catch-22.

Then it went away for a couple of years. Maybe it was the pilates and yoga; maybe it was just a good spell. I’d get twinges fairly often – again, that tightness – but there were months-long stretches when I felt no pain at all. I thought I had it figured out: whenever it seemed to be approaching a flare-up, I’d take a day and lie down from sunup to sundown, and that usually fixed it.

Except here I am, again in pain, again unable to walk or move, again feeling like I’m punished no matter what I do. It’s been weeks now since I had the audacity, the gall, to stand on one foot in the shower while I was soaping myself, and was slammed with the now-familiar stabbing pain at the top of my femur. (Was it a nerve being squeezed? A ligament tearing? A muscle spasming? I don’t know. None of the doctors really explained what goes on in a “strain.”) I’ve been limping and shuffling and crying and gulping Advil and living on ice packs. It’s been weeks and it hasn’t even come close to subsiding. Distances seem to stretch like event horizons – something ten feet away becomes twenty feet, then thirty feet, then forty, as I try to get myself there. The slightest movement takes meticulous planning. And I’m so exhausted. I spend so much time thinking about my hips and so much energy protecting my hips that I can’t do anything else.

I want to go jogging so bad. I’ve been craving it.

Everyone’s telling me to go to another doctor. I will, I will – my husband and I are going to sit down and find one tonight. The most basic reason I haven’t yet is because I already have. I’ve been to three. They’ve already given me the stretches and the exercises. I could at least get a refill on the medication, and I’d sure like to, but I’m afraid of how much it’ll cost – last time, the muscle relaxers were a hundred and the office visit a hundred more. Besides, how long do I keep taking medication? When do I get to just fix this?

Plus, the sheer task of choosing a doctor is enough to send me into a panic. When I do a search on the Blue Shield website, I come up with dozens of names with no rankings or descriptions. I’ve chosen some pretty bad doctors this way in the past. I steel myself up to do it and then i can’t bring myself to do it. I just have this overwhelming certainty that whichever doctor I see is going to take my money and brush me off. And my back will continue to hurt and hurt and hurt.

And I keep wondering if the whole sprain/strain thing is just a smokescreen anyway – if the problem is something completely different and has gone untreated. What if the doctors aren’t taking me seriously because I’m a woman? What if they think I’m lying? (Why can’t I get away from the idea that doctors are automatically suspicious of me?) When I went to the ER for the first time, I wanted so badly to ask him if I could get a temporary parking placard so that I wouldn’t have to limp, in incredible pain, across vast parking lots. But I didn’t because I was afraid he’d assume I was faking the pain to get better parking. I find that I want some object – a placard, crutches, a brace, I don’t know – as much for validation as for pain relief and assistance. I want what I have to have a name. Sprain/strain is vague. It sounds minor. “Oh, you strained it, just take a load off.” I’d feel better if this looked and sounded as serious as it feels. (But maybe the term “strain” is completely accurate. Maybe the doctor just didn’t explain it very well.)

I’m reminded, here, of why I stopped getting my curly/frizzy/Jewish hair cut professionally. Stylists were putting huge knots into it, or straightening and layering it without my permission. Every time I went it turned into two people fighting my body – one of us hating it and wanting another, and the other dismissing its needs to get their job done faster. I’d love a good haircut; nowadays it always just looks blah. But I’ve never gotten a good haircut in my curly-haired life.

I’m reminded of all the people I’ve let take advantage of me. All the times I’ve shut up and let it happen.

But the core of the issue is that I’m afraid I’m making this up. I’m afraid it’s all in my head. Why didn’t I think to go to the ER that night in my boyfriend’s apartment? I’d known other people who’d gotten quick injections for back spasms; in fact, one of them was standing over me, offering to carry me to the bathroom. Obviously it was because deep down, I was just pretending. Why can I still not wrap my head around the idea that this pain is real? Why can’t I stop thinking that I could walk just fine if I really felt like it? Because the doctors sent me home without a placard? Because it doesn’t have a name? Because I’m just a hysterical sissy woman who wants attention? Because I’ve internalized the trope of the hysterical sissy woman so much that in the examining room, I downplay the symptoms that could lead to proper treatment? So much that I don’t even think to tell the doctor that the treatment’s not working, or even make sure she heard me correctly?

I wanted to bake bread today, but standing up and kneading dough is out of the question. I wanted to work on my novel but couldn’t concentrate.

I’ll confess, there’s no real point to this essay. Connect it to feminism, connect it to health care, connect it to disability – I just wanted to get it out before I grit my teeth and go to the Blue Shield website and start the whole circus over again.

I just want to know why I lack the courage to admit that it hurts, to ask someone to listen and help.

(Cross-posted at Alas, A Blog.)

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6 Responses

  1. You’re in LA, right? I have a friend in LA who has been dealing with chronic back issues for quite some time now. If you’d like me to, I can easily ask her who her doctor is, and if they aren’t covered by Blue Shield, you might at least be able to get a recommendation for someone who is.

    I know how daunting and awful it is to know that you need a good doctor, and be continually frustrated in that search. Having someone actually *on your side* who affirms you, believes you, and prioritizes your health and well-being in ways that you might not actually be able to is incredibly important.

    It might be too far away to be an option, right now or at any point in the forseeable future, but my best friend has been dealing with back problems for the last 4 years or so, and could probably recommend a good doctor as well – but they’d probably be in San Diego.

  2. My god, Julie, this was literally horrifying to read. I’ve thrown my back out before as well, and I know how terrifying that moment is when you’re suddenly not sure how you’re going to get into a lying position without, you know, spontaneously combusting. Fortunately my back pain isn’t chronic, but my dad’s is, and he just got an epidural for it – and while he’s not totally pain-free yet, it really helped, and he’s feeling better every day.

    Anyway, you say you’re not sure what the point of your essay is, but it sounds like in the process of writing it you’ve come to an important realization about the need to advocate for yourself in your medical care. Your pain is not just in your head, and your doctor can’t possibly know what you’re experiencing unless you’re willing to say “no, I tried that, it didn’t help” or “no, it’s not just strained, it’s sprained.”

    Maybe it would help to take someone with you to your appointment who can advocate for you? My mom always complains that her parents are terrible about asking the doctor the kinds of follow up questions they need to be asking, so she’ll occasionally go with them when certain questions need answering. It’s sometimes easier for someone else who has seen you in pain to stand up and say “that’s no gonna cut it.”

    Anyway, I hope you feel better soon!

  3. I’ve had occasional bouts of horrifying back pain, though they don’t sound quite as horrifying as yours– the worst was one morning when I had to walk home from Pat’s house and the entire world had this weird psychedelic glowing halo that I can only assume was some side effect of the pinched nerve that was causing me agony. That spell lasted at least a month, and when I went to the doctor (and here’s where the feminist connection comes in), she insisted that I give her a urine sample because I’d had a UTI a few months earlier and she thought it might be an infected kidney, despite my repeated explanations that I knew it was muscle spasms in my back, because I’d had them before and I frigging know what they feel like.

    I also was prescribed muscle relaxants, which didn’t work much at all besides helping me get to sleep when the pain was bad, and I saw a physical therapist who gave me some stretches that, like you describe, was of some help but not enough. Since that spell (and it had happened to me a few times over the past few years before that), I’ve started weight training and have been paying special attention to strengthening my back muscles, and the pain hasn’t come back. That might be a coincidence, but it might not. I know that my pain is due to muscle spasms, anyway, whereas it sounds like you might have something more sinister– maybe a slipped disc?

    I agree with Matt that bringing somebody (like Tom) to the doctor with you is probably the easiest way to make sure that all the questions you want to ask do in fact get asked. Bringing family members to the doctor is really not unusual, and bringing a friend for moral support (if Tom weren’t available) would also not be thought very strange, I don’t think. It sounds like the crucial thing to do is to make sure that your doctor knows that this is something that happens over and over again, in the same way. Maybe you should ask for an x-ray, or something, to determine whether the problem is muscular or skeletal?

    I hope you feel better!

  4. {{{Julie}}} You are not alone in this response to pain, and it’s likely been reinforced by the health-care system. It’s all kind of crap all rolled up – and yes, the pain is real.

    I can’t diagnose or treat over the internet but I sure can advise – you have my Email and I’ll send you my phone number. You deserve better than you’ve gotten from docs.

  5. […] you will hear all sorts of stories about how severe pain is ignored or worse.  About how pain isn’t taken seriously. About how people in pain hear the same rubbish repeated so frequently they can easily rattle off a […]

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