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Social Issues

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

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
Social Issues

when life is really, really hard

shark week
[content note: depression]

I found that picture about a year ago. I’m not sure why, but searching for period-related humor when blood is coursing like a river out of my vagina makes me feel better. I try not to laugh too hard, because laughing hurts– instead I keep it to “dour chuckle” level. But, it’s coming again next week, and like always I’m running around simultaneously trying to ignore it while doing everything I can to prepare for it. It takes a lot of preparation– I have to write three posts and schedule them (I usually post things the day I write them), cook a few things that will keep me and my partner fed, and make sure that I have food I can eat while laying down. The house has to be spick-and-span because it turns into a nightmare that makes me feel even worse because I’m wandering around making messes that I don’t have the ability to clean up, and the night before it starts I put ginger ale, painkillers, poptarts, heating pads, books, headphones, and laptop next to the bed.

Every month, it feels like such a stupid thing to get stressed out over, but I do. I have to plan to be a bed-ridden invalid every month, and it drives me nuts. When the notification pops up on my phone that it’s time to take my NuvaRing out, the first thought that crosses my mind every time is shit that’s NOW how did it happen this fast?!

And then there’s also the itsy-bitsy part of it all that I’m going to be in literally mind-blowing amounts of pain. I am in so much pain there are moments when I cannot see, when I cannot hear, when I cannot breathe. And every month, everything inside of my brain starts screaming at me how in the world can you stand this every month, this hurts so goddamn fucking much. And I’m laying in bed, screaming, and all I can think is dear ever-loving fuck this is never going to end, is it.


This winter I was diagnosed with costochondritis. I’d been experiencing low-level chest pain for about a year, but it finally got to the point where I couldn’t walk or sit up for extended periods of time without it getting more than just annoying. My doctor handed me the diagnosis and the only treatment: take ungodly amounts of Advil and lie still until the pain goes away. It’s gotten back down to manageable levels, but the past few weeks have really done a number on it– I’ve been traveling pretty constantly, and my chest is letting me know that it is done. I spent all day on the couch yesterday, alternating between heat and ice and playing Hearthstone, and when my husband came home I had to ask him to do every single little thing for me. Honey can you get me some water honey can you move this laptop honey can you . . .

And everything inside of my brain starts screaming you are a burden you are weak you don’t contribute anything you just take and take and take and take.


My mother, my maternal and paternal grandmothers, and my great-grandmother all have fibromyalgia. My mother was first diagnosed with it when she was about the age I am now, and I’m starting to notice things. Little things, like waking up in the morning feeling like I haven’t slept and I’ve been run over by a truck. Feeling like random spots on me are bone-deep bruised, although there’s nothing there and I haven’t done anything to it. Intense, vivid dreams. Mental fogs. This weekend I did all the makeup for the bridesmaids in my sister’s wedding, and that night I couldn’t move and could barely breathe– after doing nothing, or what should have been nothing, but is apparently now a big deal for me.

I’m laying on my parent’s couch, hating every second of feeling so weak, and now I’m staring at a lifetime of constant, never-ending pain, and my brain starts screaming you will never escape this.


While I deal with triggers and times that I refer to being in a “funk,” I’ve been extremely fortunate not to have struggled with serious depression. I’ve had suicidal thoughts, but not suicidal impulses, and those times have been brief and related to periods of extreme stress or emotional trauma. I’ve never had to fight a constant never-ending daily battle with mental illness, and I am extremely grateful for that; but because of everything I’ve just described I feel that I can understand what it could be like.

Every day I have to make a monumental choice about something that seems like it should be relatively simple for normal people. Because I have chronic pain and illness, I have to fight every day not to give in to it, not to let the FM and the costo control everything about my life. I do things, even knowing that they will hurt, because the alternative is do nothing. And I go about my life every day knowing that the same will still be true tomorrow. Tomorrow, I will hurt. Tomorrow, I will be tired. Tomorrow, I will not want to get out of bed. Tomorrow, there will be pain. Always.

And, I have to fight all the mental baggage that comes with it. I have to acknowledge things like you don’t contribute or you’re a burden as the lies they are, lies that have been given to me both by my culture and by a jerk-brain fed by insecurities and doubts. Lies that feel so true.

What I can’t imagine is going through something so painful while also having to fight the lie that suicide would be a release– a lie that my own brain is convinced is absolutely true. Those among us who fight severe depression– and if they are breathing, then they are fighting with all of their might– are dealing with the same things as I am, in a different way. But, I’m lucky. I wake up in the morning and even when I am in breath-taking pain I can feel my partner wrap his arms around me and I am happy. My friend comes over and we watch Rizzoli and Isles together while I’m curled up under a fuzzy blanket and high on painkillers, and I’m laughing because even with the pain, life is good.

I can’t even imagine going through life experiencing all the pain I do and not having those touchstones to latch on to.

Which is why I’ve been crying and shouting off and on for the past two days. When I heard that Robin Williams had passed . . . I’m not sure why his death has affected me so deeply, but I can’t help but think of all the ways his art has changed my life and then start crying. And then when I hear some of the stupid things that have been floating around the internet, I just want to scream.

My pains, because they are physical, would never be treated that way. I would never be called a coward, or selfish. If one day a cyst ruptures and it causes a systemic infection and I die, no one is going to hear about it and think what a selfish thing to do, dying like that.