Telegrams from the Sick
A day in the life of chronic illness
You wake up. You’re in pain. You can’t tell where it’s coming from at first, only that a stabbing pain has jolted you awake.
You start to do a body scan and realize the pain is coming from your left hip. It’s radiating down to your left knee. Your hands are tingling and numb. Your neck is on fire. You try to gently roll yourself out of bed without the use of your hands and without making the pain in your hip worse.
You try to stand. You wobble. You can’t get your footing. It hurts to put weight on your feet. Your bones drifted apart at night again. You roll your feet around slightly until they crack back into place. You wince. You can’t stand fully upright yet. Your knees are too tight. You try to grab your phone off the nightstand to see what time it is. You can’t grip it. Your hands are swollen like an inflated rubber glove and your knuckles are red. They won’t cooperate. You finally manage to pick it up and press the button that wakes the screen. You slept later than you meant to. You put it down.
You hobble to your bathrobe at the foot of the bed. You try to put it on. You lift your arms. It hurts. Your shoulders start screaming. You try not to start screaming so you don’t wake up your partner, still sleeping in your bed. Jolts of pain travel down your arm as you pull on your robe. Your elbow issues a popping sound loud enough to sound like a twig snapping.
You’re able to stand more upright now, but not fully. You start to carefully, gingerly make your way to the bedroom door. You loosely grip the footboard on your way. You can’t really grip, but you do your best. You’re worried about falling over, which would result in untold cascades of pain and probable injury. You get to the door. You can’t grip the knob. You grasp it as hard as you can and try to turn it. It won’t turn. You take a deep breath and try again. It turns. The door has swollen in the summer heat and you have to put some muscle into prying it from the doorjamb. It hurts. Your elbow and shoulder start screaming again.
You have to walk through the living room, dining room, and kitchen hallway to get to the bathroom. It may as well be the distance between two cities. Every step hurts. It feels like limping through the last few feet of a marathon. You just woke up, but you’re already exhausted and swimming through brainfog-molasses. When you’re in pain all night you don’t ever really wake up feeling rested. Your body does the best it can to repair itself, but it can never catch up.
You walk slowly, gingerly, trying not to step on the cat that swirls around your feet and bolts away when you take an erratic step. You make it through the living room. By the time you get to the dining room, you can kind of stand up all the way. You try to grasp the dining room chairs to stabilize yourself. Your hand won’t grip. Putting weight on it hurts. You have to still make it down the kitchen hallway.
Your feet ache from the feel of the cold tile. It’s warm in the house but your toes are purple. Blue. White. Hypersensitive to cold. The bones in your feet still aren’t fully in place. The hard, flat surface of the kitchen floor offers no arch support. Every step hurts.
You make it to the bathroom. You close the door with your shoulder, too weak to push it closed with your arm. It hurts. You limp over to the toilet. You try to lower yourself down, slowly, but ultimately your knees and hips give out and your body crashes onto the seat. You’re worried the toilet will one day topple, ripping itself from the wall. The cold of the toilet seat hurts. It feels like you have a fever but you know you don’t. You reach for the toilet paper. It’s too far away, so you have to lean. It hurts. You manage to grab some toilet paper. Reaching back to wipe hurts. Your knees hurt but you do your best to stand again. You shamble to your feet. You have to shower.
You turn the shower knob. It hurts. Your hands can’t really grip the knob, but you eventually get it. You blast yourself with the hottest water you can stand. It’s one of the few times you don’t feel pain all day. The hot water softens your joints, relieves the pain. You don’t want to get out. You’re going to be late if you don’t, but you savor this brief moment in time where some part of your body finally doesn’t hurt. Eventually you must relent. You turn off the shower knob; it hurts less.
You step slowly and deliberately out of the tub. You’re afraid you’ll fall. You rest your forearm on the wall as you crawl out, because you can’t trust your hands. You grab your towel, try to lift it over your shoulders to dry your back. It hurts. You put your bathrobe back on. It hurts. You go to the sink to brush your teeth. You can barely turn the knob on the faucet. You grab your toothbrush, attempt to squeeze the toothpaste tube, but it feels like squeezing a piece of granite. It hurts. You brush your teeth. Some days you can grip the toothbrush okay, but today it slips out of your hand and lands on the floor. You know this means you’ll have to bend down to pick it up. You know it will hurt. It’s so hard to make yourself hurt yourself, but you need to get the toothbrush off the floor. You take a deep breath, stabilize yourself on the vanity counter, and slowly bend as low as you can to pick up the toothbrush. Your spine is stiff. Your left hip is screaming. It hurts so fucking bad. You take another deep breath, and slowly rise back up, toothbrush in hand. You rinse it in hot water and put it back in its place.
Your hair is wet and you need to do something to it. You towel dry it (it hurts) and apply product (it hurts) and comb it (hurts) until you know it will air dry into something close to a style you want. You don’t always get your first choice thing when everything you have to do hurts so goddamn much all the time. You settle a lot. If you can’t do buttons, you don’t get to wear that shirt. If you can’t lift your arms, you can’t pull that other shirt over your head. As you deliberate about what will hurt less, steeling yourself for the trek back through your house, you’ve wasted another five minutes in the bathroom. You’re definitely going to be late.
This is just the first 30 minutes of your day.
You try to do your work. Your inbox feels like the hydra; every email you answer spawns three in its place. You can’t keep up. It feels so overwhelming. You can barely make sense of what each email says. You miss things. Details. Big picture themes. You misread things, you forget what you read, you confuse who sent you what. Your working memory is shot because you’re so exhausted all the time. You feel like you’re constantly in a room with a slow carbon monoxide leak. Like you just ate an edible. Like you’re slightly concussed. Your brain feels swimmy all the time and you just want to give up and sleep. Paying attention to anything, even things you really love, feels impossible.
It’s embarrassing how poor your cognitive functioning truly is. You had a 4.0 in college and grad school. You used to read Judith Butler for fun. Patricia Hill Collins. Wittig. Marx. Texts on complex philosophical theory used to make your brain light up with novel connections. These days you can barely make sense of a pop psychology paperback. You’re supposed to teach your class this week, and you can barely make sense of the texts you’ve assigned. These are texts you’ve taught before, but somehow now you have a hard time following the authors’ trains of thought. These are concepts you know extremely well, but have a difficult time translating and explaining them to your students. You have to tell them at the beginning of the semester that you probably won’t recognize them or remember their names for a few weeks. Some of their names you never learn.
They’re exceedingly gracious. They can feel how patient you’re being with them, because you have a renewed sense of empathy for what it’s like to struggle so hard. They send you encouraging emails and stay after class just to talk to you. You start to decide that there’s a different kind of learning that can happen when you lead with love. You hope they remember what it’s like to be treated well by a professor who really cares about them. They tell you with tears in their eyes that they can tell you care. You grade softer than ever. You can’t hold them to a standard you can’t meet. You start to feel unreasonably resentful towards systems that aren’t built to be gentle.
You go home and try to write cover letters. You read and re-read and re-read them but you can tell they don’t make sense. They’re full of typos. Sometimes you send them before you catch it, wasting more of your time. Shooting yourself in the foot. You zhuzh your CV for the millionth time, scan job boards full of offensively incomprehensible job titles, consider going on disability for the thousandth time, wonder to yourself if “screaming into the void” is a profession. You have to exist within capitalism somehow, but there seems to be no viable option. You strongly suspect you couldn’t hold down a full time job right now even if you had one. Part time adjuncting even feels overwhelming. Everything feels overwhelming. Making grocery lists feel overwhelming. Making appointments for car maintenance. Going to the pharmacy. Doing laundry.
Calling doctors feels the most overwhelming. There are too many doctors. Rheumatologists. Gastroenterologists. Cardiologists. Neurologists. Opthamologists. Ear, nose, and throat doctors. Physical therapists. Occupational therapists. There are too many procedures. CAT scans. Pulmonary tests. Ultrasounds. EKGs. Blood draws. Every doctor’s office is understaffed. They have wait lists four months out. One year out. You play endless phone tag with all of them. You have to keep calling them, even when you feel like you’re going to pass out from fatigue and you can’t keep track of which doctor does what. You forget the name of the procedures your doctor ordered: “The one where you go in the tube and have to lie still?” Sometimes they call to make an appointment with you and you ask what it’s for. They laugh. They’re the third one who’s called today. You can’t keep it straight.
You have two doctors appointments in one day, sometimes four or five a week. When your doctors realize how sick you are, they’re so nice to you that you’re worried you’re dying and they won’t tell you. The truth is they don’t know what’s wrong. They keep trying new things and it doesn’t work. They genuinely feel bad. You’re too young for your body and brain to be this fucked up.
You come home from the doctor. It’s 3pm. You’re completely depleted. You get sideways on your couch, propped up with pillows to try to not hurt, and throw on some HGTV show. It’s mindless. You don’t have to follow along too much. It’s numbing, and all you want is to not hurt. For things to be easy. You slowly drift off to sleep, and nap for 30 minutes. An hour. Three hours. Sometimes you come to and the sky outside your window is darker than you expected. It feels like you lost time more than rested. Your neck is sore from the angle you fell asleep in. You try to gently stretch it out, rotating your head as slowly as you possibly can. But it hurts.
You try to answer the texts you’ve been meaning to get to. You try to maintain friendships, partnerships, go to social events, try to enjoy what you can because you have no idea what’s wrong with you or how long you have left in this body that seems to be rapidly disintegrating around you. You’re constantly exhausted and suspect every place you go will be hard to get into; there will be doors to pull, there will be steps to climb. Once you arrive, there will be air conditioning and you’ll shiver, (which hurts) there will be no place to sit down, it will be noisy and you’ll have a hard time following people in conversation. You’ll get tired and have to go home early anyhow. Still, you go because you want to be seen. You want to feel included.
When people don’t invite you, don’t ask you to help, assume you can’t do it, it hurts so fucking badly. You feel like you’re lost at sea, worried no one gives a fuck about you anymore. You can’t be bright and sparkling in conversation anymore, but you still want to matter. You still want them to love you. To not forget you. You cry about this often. The people in your life who do love you, who do stick around, who want this version of you even though you can barely hold a conversation and get confused a lot become the most precious people in the world. You love them with a love you didn’t know was possible.
You strive to cultivate erotic energy, but it feels like trying to pump air into a slashed tire. You can’t masturbate because your hands tingle and go numb. You try to use a vibrator but you can’t grip it without your hands hurting. You can’t fist your partners anymore. You can’t be on your knees on the mattress because you can’t gain purchase. You can’t lower yourself onto the bed or get back up from it without it hurting. Your sexual energy is completely zapped. You want to want sex. You miss the being you used to be, dripping with carnality and inexhaustible sexual appetite. That version of you feels like a cardboard cut-out. Or maybe you’re the cut-out now; a facsimile of your former self. You remember being that person, but it feels so remote and unattainable. You worry your partners and dates will get frustrated with you, bored of you. You cry about it with them in couples counseling. You know you can’t offer them what you used to.
Yet you’re becoming a different kind of person, a person you really like. You don’t get bent out of shape about little shit as often anymore. You’re so much more patient and kind. You don’t get irritated when your kids can’t do things or you have to walk behind someone older and slower than you. You hold the door open for wheelchair users not out of some savior complex but because you see how infrequently others do it. You start to notice these things. You savor the rare things that feel good in your body. Warm breezes on your leg hair. Feeling full after a good meal. The cat who purrs in your lap. The rare times that you feel cozy in bed rather than stiff and wracked with pain. The orgasm you finally get to have after weeks of feeling completely numb. These experiences become miracles.
You can’t believe how much you’ve taken for granted in the past.
You begin to see the importance of moving slowly. You offer encouragement to the other people around you who are falling apart. Coming to terms with illness. Having mental breakdowns. Struggling with the grief of being trapped in a body that feels strange and broken. Your advice is no longer empty platitudes but drawn from lived experience. Sometimes they say you “don’t look sick,” and you want to stab them. But you don’t. You’re now an ambassador for the sick. You smile and explain how much pain you’re in constantly, because the casual observer can’t tell. They don’t live in your body. How would they know? Being marginally functional and not bedbound disrupts their idea of what “sick” looks like. You understand that everyone is afraid of becoming what you are, but you can offer them a vision of it that doesn’t look like a tragedy. It softens the edges for others who fear their own eventual disability and mortality.
You extend a lot of goodwill to everyone around you. The friends who don’t know how to interact with you now despite knowing you since you were a teenager. The complete strangers on the internet. You finally learn to give yourself a break in ways you never did before. You don’t have a choice, but still, it’s nice to finally let it in.
Despite the positive ways you’ve changed, you don’t ever feel grateful for being sick. Everything does not happen for a reason. Sometimes people just get horrendously sick and there are no answers. There is no House, M.D. who can’t wait to suss out your diagnosis and get you on the miraculous road to recovery. When you tell your doctor, “I just want someone to finally say, ‘You have X, I’ve heard of it, and I know how to treat it.’” They tell you, “You might not ever get that.” You burn with resentment.
You miss your old life and you know you will never be the same. You grieve that person. You grieve a future you’ll likely never have.
You eventually learn to accept it. You learn to embrace the stillness. You know you’ve needed it for so long. You’re grateful to still be here because some people don’t get that. You realize complaining about doctors sounds ungrateful to people who can’t go to the doctor at all. You enjoy a lot of privileges others don’t. You still get to watch your kids grow up. You still get to go to the beach. You still get to laugh with your partners. You still get to watch the irises in your garden bloom and the fireflies in your back yard glow. You still get to read raunchy erotica and make sex jokes with your friends. There is still a richness to life that makes it worth it to wake up every day, even if those days are filled with pain.
You climb into bed after at long last. You didn’t get everything done that you needed to, but you did your best. You pull the junkfood book you’re reading off of your nightstand and read a few pages until your hands become too numb and tingly to hold it. You put a pillow under your knees. Behind your back. In the crook of your neck. You let out a sigh of deep relief because your bed is still your bed, and it still feels like the safest place on Earth. You hope you’ll have a good day tomorrow, one of the rare ones you get every few weeks. You say goodnight to your partner and flick off the light.
In spite of it all, you are happy to be here.
In May of 2025 I was diagnosed with mixed connective tissue disease, “a rare autoimmune disorder characterized by symptoms overlapping with lupus, scleroderma, and polymyositis.” It’s common for autoimmune diseases to co-occur with Ehlers-Danlos syndrome, which I also have. I started experiencing symptoms in 2018. Since then, I’ve been incorrectly diagnosed with chronic Lyme disease, Sjogren’s syndrome, carpal tunnel syndrome, rheumatoid arthritis, and “just trauma.” It often takes 7-10 years for a chronic illness to be appropriately diagnosed, with many misdiagnoses along the way.
If the above essay sounds familiar to what you experience, get blood testing and ask your doctor if it’s MCTD. Most doctors haven’t heard of it and might not think to look for it. There is treatment available and you’re not alone. If you’re living with MCTD, I have found this online support group helpful.