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chronic pain

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a story of becoming sick

When I was at Pensacola Christian College we only had ten minutes between classes, which made crossing campus and getting to class on time a challenge. Complicating that was the fact you couldn’t just use the stairwell or elevator closest to you. You had to use the elevator or stairwell assigned to your gender, which could be quite inconvenient. All of the above meant that taking an elevator to a second or third floor in a six- or ten-story building was … well “frowned upon” isn’t a strong enough term. It was a violation of a fairly strong social norm, and violators were punished.

I went along with the culture– talking smack about “those people” who took the elevator to the second floor, mostly– until, abruptly, I was one of “those people.” My dislocated hip took months of physical therapy before I could walk without crutches. Even after that, stairs continued to be beyond me. I took the elevator to the second floor.

I was physically accosted. Papers were knocked out of my hand, my messenger bag torn off my shoulder, books stolen. My dorm room was vandalized once (“take the stairs” written in magic marker on our door). For a while I didn’t realize that people weren’t just being assholes for no discernible reason: they were being assholes because I didn’t look sick. They couldn’t see an obvious reason for me to be taking the elevator– wheelchair, crutches, walker, an obvious muscular or skeletal condition– so I must just be lazy and selfish.


After a semester at Liberty of doing nothing but sitting at different versions of desks I decided that I needed to move more. When the weather was pleasant I went for walks around my neighborhood. When it wasn’t, I used an elliptical at the gym twice a week.

One evening, as I concentrated on keeping my hips and knees aligned and shoulders relaxed, someone flicked my arm with the tip of her finger. I pulled my earbuds out to hear her sneer “if you’re not going to exercise then you need to get off this thing and let someone on who’s actually going to use it.”

I stared at her, dumbfounded. I was exercising. I was using it. She stared back, arms crossed and hostile. It dawned on me that she saw someone moving “slowly” as selfishly taking up valuable space. What I saw as a valuable aide for moving in a low-impact way, she saw as a tool for a full-body fat-busting workout. I wasn’t doing pell-mell full-tilt cardio, so I was just being lazy.

Timidly, I told her I would be done in five minutes. I’d planned on another fifteen.


My first date with Handsome was the Cherry Blossom Festival. That afternoon we walked around the Basin, from the Lincoln to Jefferson Memorials, and finished up with a quick tour of the National Air and Space Museum. At the end of the day we took the Metro back to his car and I fought with myself to contain my sigh of relief at finally sitting. I dozed on his shoulder for the entire ride, and then covered up how stiff and sore I was for the rest of the evening. The next day when I had trouble moving around, Handsome noticed and asked what was wrong. I tried to laugh it off with “Oh, my feet hurt from so much walking around yesterday.”

He offered a foot rub– and I was shocked. I hadn’t expected him to respond with generosity and kindness. I accepted, but the entire time a deep and encompassing part of me tried to cringe away. I didn’t deserve this. After all, I was just lazy. If I cared to, I could “get in shape,” and then I wouldn’t be so sore after only walking a few miles.


I’d started to have what my mother has always referred to as Truck Days, as in “I was run over by one.” I would wake up in the morning and my first impulse would be to groan at the pain. But, life moves on, and one day I couldn’t afford not to run errands.

While I was out, I drove around the parking lots looking for open spots close to the door, and then I would hobble up to the door and around the store or post office or bank. At the grocery store, two men were outside smoking. I kept my gaze on the ground, watching my feet, and tuned out the street harassment. After a bit I realized it wasn’t ending with “hey sexy” like it usually would. They were still talking, obviously trying to get my attention.

“Hey baby, are you ok?”

“Yeah baby, do you need us to help you with something?”

I didn’t respond, tried not to react at all. They got louder, more aggressive, started following me. I couldn’t walk fast enough to get away from them. One tried to touch me. I jerked my arm away.

“Fine. Be like that, bitch. We were just trying to help.”


“Is it cold outside or something?” accompanied by a laugh.

I looked up from my earnest study of the different paint rollers naps and their various applications and benefits, jarred and confused at the interruption. “What?”

“Doesn’t seems like it’s cold enough outside to be bundled up like that.”

I looked down at my puffy coat and scarf, with my hat and gloves in my hand, my warm boots– protection against the muscle spasms that would come if I allowed my extremities to get too cold on this blustery 40-degree day. I met his eyes. “It’s cold enough for me,” I laughed like it was a joke.

After the sixth time someone poked fun at me for being “bundled up,” I wasn’t laughing. The next time I was getting ready to leave the house, I desperately wished for warm weather so people wouldn’t make fun of me.


Yesterday I took my first real step toward filling my New Year’s Resolution. In January I’d decided that I wasn’t going to care about being “in shape,” but I wanted to be able to walk again. Over the last year I’ve spiraled down to the point where walking further than a mile can leave me unable to move for a day or more. I want to stop this in its tracks and get my body back to a place where I can go see the Smithsonian with friends or family. I’ve been officially– finally— diagnosed with fibromyalgia after fighting with doctors and specialists for the last year. I asked for a prescription for water-based physical therapy, and yesterday was my first day.

The entire time, the therapist kept encouraging me to only do the exercises at the pace and level that I felt comfortable. I did my best to heed her advice … but it didn’t stop the embarrassment I felt at moving through the exercises so slowly, so gingerly. Shame made me ignore the twinges in my hips and lower back. Last night, I needed to be carried upstairs and helped into bed while I tried not to sob from the pain.

It’s so hard to fight against the message that being “healthy” means hurt yourself, that people who really care about their health can “push through the pain” and “feel the burn” and hold to the old adage of “no pain no gain.” That my attempts to avoid pain really just make me lazy. Selfish. Worthy of public ridicule.

Being a person with an invisible illness, with chronic pain, means dealing with the shame society inflicts on you for not being “healthy.” It’s a shame you internalize because it’s so relentless, and takes on so many forms. Combined with the “sense of worthlessness” I already deal with because of my depression, it’s difficult to fight against my diagnosis making the depression worse. To fight to believe that being ill doesn’t make me a burden, that just because I’m sick in a way many people don’t understand it doesn’t mean I don’t contribute meaningfully to the world.

Before I was injured, before I got sick, I was one of those “many people.” I judged, I mocked. I thought that because I was accommodating to people with muscular dystrophy and did my best to interact with those in wheelchairs as if they were no different from anyone else that I was a nice person. I didn’t think about my sounds of disgust, my eyerolls, my condescension and judgment toward people that I saw as lazy. I didn’t think that one day it would be people tut-tutting me. I didn’t think I would be brutally awakened to just how horribly cruel I was because I thought seeing a person meant understanding their life.

Photo by afri

I am crucified: chronic illness in Christian culture

[content note: menstruation]

I’ve talked about being diagnosed with PCOS and dealing with that on top of other chronic illnesses like fibromyalgia, and if you’ve been reading for a while and are the sort to notice patterns, you’ve probably picked up on the fact that I tend to disappear for a few days every month. I used to feel guilty about that, but, over time, I figured out that I didn’t have to. I realized that you, lovely readers, are some pretty amazing people who aren’t sitting behind your computers clicking refresh every MWF. If I put a post up, great– if not, well, you get that I’m a person and sometimes Life is a Real Thing that Happens.

What has taken me a lot longer to realize is that it’s ok to take care of myself.

Technically, my periods only feel like I’m going to die. Chances are pretty good that no matter how much pain I’m in, and how much moving around makes me want to scream, I’m not really doing anything to hurt myself if try to stand up and walk around. For years I muscled through the pain: I showed up to work, I went to class, I fed myself.

For the past few years, though, I haven’t had those sorts of obligations. I work from home. I can cook food ahead for the week and Handsome warms it up and brings it to me (usually a fantastic recipe I have for sweet potato and roasted pepper bisque). If I don’t have to get out of bed and move around … I don’t. In some ways, this has been a little more of a struggle mentally than dragging my heavily-medicated self into work. During that time, I often feel weak, useless- a waste. I joke sometimes that I feel like “an oozing amorphous blob that cries.”

But I made a sort of a breakthrough this last period. Going to the bathroom on my period is always … an adventure. I grit my teeth and scream through it, and then have to face the Mt. Everest of getting back into bed. Up until last week, even if Handsome were home I would force myself to walk to the bed, shouting something like “Never give up! Never surrender!” in my head.

never give up

I had linked my ability to “muscle through the pain” with some sort of moral quality. If I could force myself to deal with the agony, then that somehow made me a good person who wasn’t “giving up” or “giving into the flesh.” But, last week, I went to the bathroom, and then I did what, in retrospect, is only logical: I crawled back to bed on my hands and knees. If Handsome was home, I waited for him to come help me walk doubled-over, leaning on him so I didn’t have to use my abs. I’ve let him do that for me in the past, but this time, when we got to the bed, I let him lift me into the bed– another thing that hurts a lot, but another one of those things I felt that I had to do in order not to be “giving in.”

Accepting help, accepting my limitations, is something I haven’t been able to do very well, and it’s an ongoing thing. In many ways American culture reinforces this message with all its talk about “no pain, no gain” and “pull yourself up by your bootstraps,” but Christian culture adds another layer. We call it “dying to self” or “crucifying our flesh,” and it forces a nightmare onto people with chronic illness.

I’ve had a few conversations about this topic recently, and it affects a lot of people. When I was teaching classes at Liberty, I would receive a notification about the students in my class who had some form of learning accommodations. Very often, these students would later approach me to let me know that they “didn’t need to use them.” The first few times this happened, I let them not use the accommodations. Over time, though, I realized that these students really did need them, but felt like a failure of a student if they did. I started not giving them an option. If they showed up in my class on test days, I sent them to the testing center where their test was so they could be free to take their test in a distraction-free, no-time-restraints environment.

Another friend is going through a lot of health problems at the moment, and she was worried about calling into work sick, even though she had an incredibly legitimate reason. She was afraid that her boss would see her as flaky– and while that absolutely can happen to people with chronic illness, I’ve experienced it first hand– I knew her boss has seen her show up to work during times when many other people would have taken sick leave. In encouraging her, I mentioned that “most regular people don’t think that crucifying yourself is an ideal.”

That’s really been the crux of it, for me: I was taught that I was to crucify myself, and they weren’t being entirely metaphorical. Self-martyrdom is considered one of the best virtues out there in Christian culture. I should “count my chronic illness all joy” and be thankful that God had given me a thorn in the flesh. If I could push through the pain, then I was doing something bordering on holy.

It’s amazing how many different ways Christian culture teaches self-flagellation. It’s sad that I’ve had to take so many years unlearning it. Slowly, it’s getting easier for me to not see my limitations as a weakness, but as a neutral trait. Having pain does not make me a bad person. Needing help does not make me morally weak.

[update on the hacking: I finally figured out what was going on: Someone hijacked my domain name for illegal BitTorrent download spots. The e-mail and RSS feed problem was a side-effect of that, as they are automatically sent out when “new content” is added, regardless of whether or not that content is authored by an authorized admin. I’m keeping a very watchful eye and working very closely with Flywheel to get this resolved as soon as possible. I’m so sorry you all are being affected by this.]

Photo by Eliezer Borges

learning to respect my body

I’ve mentioned a few times that I deal with a few chronic pain conditions that, when coupled with my depression and anxiety, make life … well, interesting. Take this week, for example. There wasn’t a post on Wednesday for a few reasons. The first reason was that I’d been dealing with the people who always come crawling out of the woodwork anytime PCC gets famous on the internet for fifteen minutes, like it did this week with that Cracked article. That particular set of people is exhausting.

The other reason was that I had gone to the Cherry Blossom Festival and did not listen to my body.

I walked around the tidal basin, went out to the Jefferson Memorial, and at that point my body was saying we’re done we’re so done. Done. Tired. Go home now. Done. But … we had committed to meeting friends, friends who were from out of town and who we don’t get to see that often. I sternly took myself in hand and told myself that I was not going to flake out, that I would do what I said I would, and that was that. So I walked from the Jefferson Memorial to Pennsylvania Avenue. And then I stood around for the next two hours. By the time I had to walk back to the metro, ride the metro for half an hour, ride a trolley and then sit in a car for two hours … Aish. That was not a fun evening, and I am just now, five days later, getting back to something resembling a normal pain level for me.

If I’d listened to what my body was trying to tell me when I lay down in the grass behind the Jefferson, I would have told our friends “I’m sorry, but I really can’t do more today. We’ll see you when we come to town this summer,” and then I would have gone home. It still would have taken me a bit to recuperate, but it wouldn’t have been five days of my hips and back screaming at me.

But that sentence– “I’m sorry, I can’t– I know I said I would, but I can’t” is so damn hard.

It’s hard because I want to be reliable, consistent, dependable. I want to be the sort of person who keeps her promises, who lives up to her commitments. I hate “flaking out” on people, even though it’s because I’m in so much pain I can’t keep putting one foot in front of the other or even stand upright.

It’s hard because I don’t want to let the pain control my life. I don’t want to give in to it, to let it dictate what I can and cannot do. Part of me is frightened that if I start listening to the pain that eventually I won’t do anything. There will never be a day when I feel good the way other people feel good. There will never be a day when something doesn’t ache or throb or burn or stab. There will never be a day when I’m not getting a headache, or I don’t have muscle spasms. And if I give in to all of that? I’m afraid I’ll turn into a hermit.

But it’s also hard because there’s a message in our culture– in Christian culture, especially– that ignoring pain is moral. That ignoring the needs of your body is good. That saying “it’s all right, I can do it” even when your body is screaming at you to stop is godly. There’s something of martyrdom to it, even. We are supposed to crucify our flesh, after all. There’s all that talk of Paul having a “thorn in his side” and managing to do what God asked of him, anyway.

All those things together are a hard thing to ignore, even when the pain is mounting. When you combine the “Christian” concept of “dying to self” and being “self-sacrificing” with the other “Christian” concept that we are all disgusting worms worthy of nothing better than eternal conscious torment it’s going to be seriously difficult to tell yourself “I deserve to respect my body’s needs” and have it sound at all convincing.

My mother has many of the same health problems I do, and because I grew up watching my mother struggle with fibromyalgia among other things, I’ve also been given a glimpse into a side of the way Christian culture works. They would never have breathed a word of this to my mother, but it was common place for me to hear things like “your mother is so irresponsible, Samantha, no one can ever count on her.” It made me want to scream, because these people had no fucking clue what life was like in our home. They didn’t see what it took for my mother to be at church every Sunday morning, every Sunday night, every Wednesday night, every Thursday night, with tons of other commitments besides. When I look back at what my mother was doing when she was my age– after having half a dozen surgeries, even– it is incredible. I can’t even imagine doing all of that while dragging two small children everywhere. My mother is magnificent.

No one sees that when they see the results of chronic pain, however. They see all the times we back out, all the times we don’t show up, all the times we cancel, all the times when we do show up but then have to leave halfway through. They see that and they judge us.

All of that has made it next to impossible for me to see the magnificence in myself. I don’t look at all the times when I claw my way out of bed and write a post and make dinner and clean my house a little as success– I see all the things I wish I’d done and the word failure starts spinning around inside my skull. I see my slightly unorganized desk, and my slightly untidy living room and the things that need to be dusted and the shower that needs to be scrubbed and I can’t help but think that I should be able to do these things and it’s only laziness and a lack of good moral character that stops me.

Except, I am magnificent. I am not lazy. I do not lack character. My house does not have to look like I followed Martha Stewart’s weekly cleaning chart. I do not have to push myself to the point where it takes me a week to recover just to prove that I’m “healthy.” Just because I am not able to do what people without fibromyalgia can do does not mean I am less. Whatever I can do inside the boundaries my body places on me is acceptable, and respecting those boundaries is good.

Photo by Alonis

living reminders of uncomfortable realities


I wrote this post a few weeks ago and hesitated to put it up, but after reading R.A. Savilla’s account at Rachel Held Evan’s blog, and the overwhelming response to it, I’ve decided that this needs to be said.

The story of Abraham and Isaac, if we’re being honest, makes Christians uncomfortable. If you’re not the least bit bothered by God telling Abraham to perform a human sacrifice and Abraham being willing to do it, I’m suspicious of your humanity. God told Abraham to slaughter his son as a sacrifice, and he almost did it, hoping against hope.

I’m still not entirely sure what to make of this story, but I am familiar with what many people consider to be the triumphant ending — at the very last moment God sends an angel to step in, and he provides a ram for the sacrifice. It’s become a narrative we use to talk about our lives– sometimes, it looks like God is asking us to do something so difficult we can’t even wrap our brains around it, but he will always swoop in at the very last moment and provide a solution, or to save us from whatever we were about to face. And hopefully he’ll do this in the most spectacular, most miraculous, way possible.

Many of our narratives revolve around Abraham in this story– doing the hard thing that God asks of us, even when we don’t fully understand why. We don’t have all the information, so we just have to trust that there’s something more going on, something larger at stake.

But I’ve always wondered about Isaac.

We don’t know much about him in this story– we don’t know how old he was, we don’t know how much he understood about his father’s God, we don’t know how much God has told Isaac about the Abramic Covenant. All we have is a question:

“My father, behold the fire and the wood, but where is the lamb for a burnt offering?”

We don’t know how he responded to Abraham placing him on the altar he had just helped his father build. We don’t know if he was begging his father not to do this, not to kill him. We don’t know if he only cried, or if he did anything at all.

Most of all, we don’t like asking the question of the moment– where is the lamb for a burnt offering?


I have a medical condition called Poly-cystic Ovarian Syndrome, complicated by IBS and endometriosis. This means that, for most of the month, I experience uncomfortable, but most of the time, manageable pain. It’s a dull ache that most of the time I can ignore. I’ve learned to live with it– to not eat a bunch of dairy, to make sure that I drink as much water as possible, to eat enough fiber, to walk and move even when I don’t particularly feel like it, to not jostle myself, to never run, to take things slowly and don’t push myself. I always have to sleep on my right side– if I lay on my left side, the internal bleeding caused by the endometriosis shifts to a new spot, and the pain intensifies.

But, during my period, all hell breaks loose. I live in absolute dread of my period coming. I try not to think about it too much, because simply thinking about it makes my anxiety skyrocket. I start taking anti-inflammatory meds the week before, slowly building up to 800 mg a day. During my period, I have to take hydrocodone just to survive, but it barely even touches the pain. I take it not because it actually reduces my pain, but because it helps me not care so much.

I can’t move, hardly at all. If I’m home by myself, I keep the painkillers and food I can eat while lying down next to my bed. I try not to drink that much– if I have to go to the bathroom, I have to crawl there, and going to the bathroom is so excruciatingly painful it terrifies me and I usually end up sobbing because the pain is so bad. At moments, the pain is breathtaking, and all I can do is cry. There have been times that I have actually passed out and gone into shock from the pain itself. It starts out pretty localized– but, over the first two days, it spreads all the way up to my ribcage and down to my thighs. I have trouble sleeping, and, occasionally, I’ll have cramping so bad it wakes me up– you can put your hand on my stomach and feel the spasms. Sometimes, you can see the cramps clench everything in my lower abdomen; you can see things jerking and twitching just below the skin.

I don’t usually talk about this.

Over the years, I’ve built up a c’est la vie approach to my medical problems. I shrug it off most of the time if anyone asks, which is rare, because I tend not to tell people.

I learned not to talk about this the hard way.

In small groups, in churches, when people ask for prayer, there have been times where I’ve mentioned my health problems. A long time ago, I used to ask people to pray that they would simply go away, that I wouldn’t have to deal with it anymore. I used to ask that they would pray that God heal me. But, now that I’ve been dealing with this for over ten years– about 150 periods– if I ask for prayer from anyone, it’s simply a prayer for strength.

I’ve stopped doing even that, usually– because then many people will confidently assert that no, they won’t pray for strength. I don’t need strength– I need God’s healing touch on my life. “The effectual, fervent prayer of a righteous man avails much,” they’ll chirp with a promise that I’ll be on their minds every morning. And, a few weeks or a few months later, I’ll bump into them again, and they’ll inevitably ask how I’m doing. And I’ll shrug and say, “oh, about the same.”

I’m a living reminder that God doesn’t always answer prayer.

Oh, they’ll toss out the typical “sometimes God says wait,” but when you’ve been waiting for ten years and it’s only gotten worse instead of better, you have a tendency to think that’s a load of bunk. Or, their eyes will narrow slightly, and they’ll inform me that if I only believed, I would be healed.

I don’t tell them about the darkness– I don’t tell them about the fear and the terror that grips me in the week leading up to my period. I don’t tell them that, sometimes, when the pain is so bad I honestly don’t know how I can stand another second of it, that most of the time, I start screaming at God, at life, at the pain, at everything. I don’t tell them, that in my most desperate moments, that I pray for God to kill me. That I beg God for an answer– where is the lamb? Where is my at-the-last-moment spectacular rescue? Where is God reaching down in my life and sparing me from this?

The short answer– there’s never been, and he never has. There probably never will be.

On most days, I’ve accepted that.

And that makes people uncomfortable.

Because I’m the reality that life is largely a very painful experience, and, most of the time, it doesn’t go away. There’s nothing we can do to wish our lives magically better– we have to deal with the daily aches, the common pains, and move through our lives knowing that there are occasionally excruciatingly painful things outside of our control. I’m the reminder that no matter how much we think of ourselves as survivors, as fighters, that sometimes, it’s a battle with no end in sight– ever.

I’ve talked about my experience, but I’m actually rather lucky. My ongoing pain is something I can hide rather easily. I might disappear from church occasionally, but other than that no one really knows unless I tell them. But there are many, many people who can’t hide it, not really– but they try. They do everything they can to downplay their pain. They’re ashamed. They’re embarrassed. They don’t want to make the other people around them uncomfortable. Very often, these people are blamed for their pain– they must have done something to deserve it. God is punishing them. They just don’t have enough faith for God to heal them. Their prayer life must be weak. Maybe they’re not even a Christian.

And that’s wrong. Because we should be coming alongside the people who suffer, the people who mourn, the people who are in pain. And yes, it’s uncomfortable, and yes, it takes work, and yes– it necessarily means that we must accept the reality that not everything can be fixed. It means sacrificing our hero complexes and sitting down with that person in compassion and empathy– and realizing that we probably have no idea what that person is going through, but we don’t have to.

We just have to be there.