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This is What Chronic Illness Looks Like

This is What Chronic Illness Looks Like
Ness
  • On May 6, 2016

A Monday, in bed:

I didn’t sleep well. Every time I would move or try to roll over, the pain in my wrist or my shoulder or my hip would wake me up. Eventually, my alarm goes off and I am so stiff it takes an hour or more before I can heave myself out of bed. I email my doctor, seeking an appointment. I can’t imagine making it six more weeks like this—even though I have gone through this many times before.

 

A Tuesday, with an unexpected reprieve:

The relative absence of pain feels like a physical weight removed from me. This is not one of those rare days when the stars align or I take all of my meds at just the right time or get the exact amount of sleep I need to feel rejuvenated and somehow I wake up without pain. But the decrease in pain is enough that I feel like a different person, one whose shoulders aren’t always tense and hunched up around her ears, one who doesn’t have to walk slowly to disguise a limp, one who doesn’t lift anything with her left hand. Work feels like a waste of time, but I don’t remember my therapist’s advice to take the day off to savor this relatively pain-free day until it’s too late. Maybe next time.

 

A Wednesday, after a run:

I stand in my washroom, the water running hot in the shower, and seriously consider bathing while wearing my sports bra because my right shoulder screamed every time I raised my arm above waist height and my left wrist was so tender gravity made it ache. I’d also considered cutting it off, but my fabric scissors were in my sewing room on the other side of the house. I vacillate long enough that the steam completely fogs the mirror.

 

A Thursday, in the doctor’s office:

I’ve been with this particular rheumatologist a long time, at least six years. She knows me, knows I tend toward a stiff upper lip instead of frankly discussing how I’ve been feeling and why I’ve asked for an appointment a month ahead of when I was scheduled to come in. So when she asks me where it hurts most and I just sigh, she knows what that means: everywhere. But when she gets to my wrist and feels that odd lump that’s materialized halfway between my wrist and my first knuckle, she says, “Oh, I don’t like the look of that.” I spend the next hour getting blood drawn and X-rays taken of both hands and shoulders. The radiologist says I have beautiful shoulder blades. I’m not sure whether that was a joke or a come-on, but I laugh either way.

 

A Friday, while trying to get dressed:

I know what happens when I don’t get enough sleep. I do. I always, without fail, feel worse: My joints ache more. My head is cloudier. My muscles hurt. And yet whatever I’m doing instead of sleeping—reading or playing video games, usually—feels more real than some nebulous future pain. Present me wants to read one more chapter (again) while not really believing in the impact it will have in just a few hours. It’s a lesson I relearn at least once a week.

 

A Saturday, while working:

I decide to follow my therapist’s advice and not go to the event I’d been volunteered to attend to represent the paper while also covering for a colleague who’s out on vacation. Instead, I sew. I eat breakfast. I read. And I work: copy editing sports stories, writing obituaries, proof-reading the paper before it goes to press. But I can do these things without ever leaving my house, so it feels like a reprieve or a day off. I have to remind myself it isn’t.

 

A Sunday, on a day off:

Now that I’ve taken a break from teaching Sunday school, Sundays are always mine, and I guard them jealously. If you want me to come out to something on a Sunday, it’s got to be a pretty big deal—or I’d better have Monday off instead. Sundays are for sleeping in and reading while sipping tea and sewing and going for a wheeze in the park. (That’s a jog for you folks without asthma.) They’re my introvert recovery days, and I savor them. This Sunday, I take my dog for zombie training in the park. I run more and walk less than I have in weeks.

 

This is what a week of chronic illness might look like for me. It’s a week that actually did happen. And even though I felt the worst I’ve felt in a long time, people around me didn’t know. Because even though chronic illness looks like that, it also looks like this:

2016-01-14 10.17.50

Or like this:

2016-04-11 18.04.27

Or even like this:

Sweaty Ness

People—healthy people—want chronic illness to look sick and run down and worn out. Say, like this:

2016-04-26 10.32.47

Though, to be fair, I do get better medical care when I look like this.

 

 

People want illness to show. If it doesn’t, it’s not real, as evidenced by the number of times anyone with a chronic illness, myself included, has been told, “You don’t look sick!” Chronically ill doesn’t necessarily look like the flu. I’ve had an autoimmune disease since I was 13 years old, and I’ve only picked up more as I’ve gotten older. (Chronic illness always seems to come in multiples. It’s a jerk like that.) I’ve learned a few tricks to cope and to look well since then. I have bad pain day hairstyles and outfits and makeup locked, loaded, and ready to deploy as needed. Sometimes, I need them a lot. Sometimes, I can go days or weeks or, gloriously, months without needing them. The whole point of an invisible illness is in the name, y’all: You can’t see it. And some days it takes more effort than others to keep it that way. But I care about how I look, and I care about keeping my private business private, but that doesn’t help dispel the stereotypes of what sick looks like.

Chronic illness doesn’t look any one way. So the next time you feel compelled to judge someone with a handicapped tag and no visible handicap or give medical advice to someone who isn’t your patient or even just to say to someone that they don’t look sick, don’t. Because until you’ve walked a mile in my painstakingly selected, comfortable but still stylish shoes, you don’t know. I may not look sick, but I am.

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