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chronic illness

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

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