on being disabled and fat

today, it's time for a different kind of post. usually my blog posts here focus on pop culture and media, but today is going to be a little more personal. today, i want to talk about being fat and disabled, and how those things interplay in ways you may not expect.

i have a condition called ehlers danlos syndrome. depending on who you talk to, it's either incredibly rare or incredibly underdiagnosed. known as eds for short, it's a chronic, genetic condition affecting the body's collagen. collagen is kind of like the glue that holds all your tissues and bits together. i was diagnosed with this condition when i was 23 years old, but i have had it my entire life.

years back, when i started searching for a reason for all the seemingly unrelated problems i was having, i started uncovering information about eds, and it began to get easier to piece all the disparate experiences of my health together. as i read more and more about the symptoms, i could trace a line back into my past, making note of all the things that happened we could never quite explain. injuries, skin problems, struggles with food and weather. it all came into place.

it's essential for you to understand that, even if i was only diagnosed recently, and even if i have been struggling more and more as time goes on, this condition has always been there. it has always been a problem. we just didn't realize what was happening. the reason this is so important is because i am considered morbidly obese. now, we won't get into the way weight is pathologized or how bullshit BMI is, because that's an entirely different rant, but just know that i'm fat, and when i say 'fat' i MEAN fat. not 'i'm a size eight with a cute little muffin top' or 'i'm curvy with a little bit of stomach and cellulite'. i am fat. i wasn't always. i was never going to be thin, persay, i've always been chubby, and i'm just not built to be a tiny little thing. but the worsening symptoms of eds often coincides with the onset of puberty, and as you may know, people with vaginas and estrogen production tend to put on weight during puberty.

to explain how this started, we have to go back way before puberty. specifically, let's go back to second grade. it's spring, i'm about 7 years old, and i'm in my backyard on my swingset, having a grand old time. i stopped swinging. i put my feet on the ground. for no discernable reason, my right ankle decides to completely give out, hitting the ground at a 90 degree angle. whimpering, i crawled in my house and called for my mom. at the time, my ankle looked fine, so she gave me some ice and some children's advil and we moved on with the rest of our day.

then the next morning i woke up to ankle covered in bruises swollen to the size of a softball. my mom took me to the doctor, who decided it was sprained, but never even took an x-ray. it hurt for a few days, i limped, and it mostly stopped. through the years it would bother me on an off, and i would wear a neoprene brace from the drug store and call it a day. then seventh grade rolled around.

(there are other things in this time period of course, but they aren't horribly notable. there were times in sparring when i did tae kwon do where i wouldn't tap out, because i didn't realize the way my body twisted was supposed to hurt. there were frequent cavities. there was my incredibly sensitive skin, and my perpetually nervous stomach. there was that time in fifth grade i tried to climb a rockwall and did... something to one of my knees that no one could ever really explain.)

come seventh grade, my ankle starts bothering me all the time. i tweaked it one day in pe, doing who knows what, and it just never stopped. i wore my drug store ankle brace, but it wasn't doing anything. so we went to the doctor. we went to a lot of doctors. they told me they didn't know what was wrong, but just to avoid any and all impact. this is where it begins. for most of seventh and all of eighth grade, i was essentially barred from doing anything in pe but walk the track in circles. i was on a swim team, at the time, but that's hardly a big fat burner. so here i am, the beginning throes of puberty, always a little short and stocky, and all easy physical exertion has been taken away from me.

by the time i reach ninth grade, we have tried pretty much everything to figure out what is wrong with my ankle. i have had cortisone injections, lidocaine injections, every kind of imaging on the planet from x ray to mri to bone scan to flouroscopy. i have been in physical therapy more than once, and tried more than one kind of custom orthotic. finally, one podiatrist tells me he just has no idea what's causing my pain. he can't find anything wrong. if i was older, he would just fuse my ankle joint, but at the time i am not even 14. (years later, i will learn joint fusions are incredibly common in eds patients). at one point, in ninth grade, they put a cast on my ankle for six weeks, just to see if complete lack of movement would fix it. it didn't. at this point, we pretty much give up on my ankle, and i resign myself to a life of vague joint pain and an inability to exercise.

around this time, i start developing a different problem. i'm not sure, honestly, if it's connected to my eds, but it has to do with a situation that almost certainly is. i start noticing a bump on my right knee/outer thigh that hurts when i press on it. i tell my mother, who takes me to the doctor. things like painful lumps are always a concern when you have a history of cancer, which i do. tests are run, scans are taken. you know the drill. eventually, it's decided a biopsy is needed. but it's my thigh, right, so it's fatty tissue, which is hard to biopsy. the doctors decide the best thing to do is just remove the whole lump in order to biopsy it effectively, which will require surgery. the surgery is scheduled for the end of summer vacation. i sleep in a cot while i recover, because i cannot climb the ladder of my loft bed. it's a minor procedure and recovery is easy, but i am, even more so than usual, banned from physical exertion, including when i get back to school to start tenth grade. my pe coach for that year is not thrilled with my limitations and makes this very, very clear.

come september, my incision has healed, and i can minimally participate in pe once more. but, as always, i cannot run, jog, jump, or do any other high impact activity. since my high school is in another city, i can no longer do swim team. i have also taken up theatre by this point, and wouldn't have the time for sports even if i could have participated. a few weeks into my recovery, i am at a friend's birthday party when something happens.

there i am, in the first hour of my friend's party, standing in her kitchen doing absolutely jackshit nothing when my knee makes a horrible popping sound and i fall immediately to the kitchen floor. instantaneously i am in agony and my knee is swelling. it takes several people to help me off the floor and over to the sofa. my friend's mom is a nurse, tells me it probably dislocated, and gives me some ice. i call my mom, but she's at work and can't come get me until she's off, so i spend the next five hours on my friend's couch with an ice pack.

around nine, my mom picks me up, takes one look at my knee which currently resembles one of those enormous french grapefruits, and takes me to the er. at first, i struggle to walk through the parking lot, until the pain overwhelms me, and i allow my mother to push me in a wheelchair. this is when she realizes something is very, very wrong. i am equal parts stubborn and independent, and the moment i gave in and let my mom help me that way, she knew i was in a truly enormous amount of pain.

the people at the er don't do a whole lot. they give me an isolation brace, tell me to use crutches, and to make an appointment with my gp. we go home, grateful we have crutches and painkillers on reserve from my surgery over the summer. in fact, the cot is still in my bedroom, which turns out to be a blessing, because it will now be months until i can climb my loft ladder again.

i spend the next two months in an isolator brace and on crutches. i was also completely fucking miserable. the crutches hurt my shoulders and gave me bruises all over my arms. with my left knee injured, i was putting most of my weight on my damaged right ankle. my campus was big and hard to navigate in a timely manner. i was kicked out of my pe class for being unable to participate. weeks pass, and my knee is just not getting better. this kicks off a year and a half of appointments, trying to figure out what's wrong. trying to get doctors and physical therapists to believe me when i tell them i really was just standing there when it happened. at this point, i am in constant pain. i manage to keep up with school and theatre, and that's it. when i am not doing those things, or with friends, i am at home with my knee up and iced.

just when it seemed like we'd it an impasse, i made a demand of my doctors through my mother, i wanted to see a different physical therapist. specifically, i wanted to see the physical therapist i'd seen for my ankle, back in middle school. the man i'd been seeing for my knee had never quite meshed with me, and i didn't feel like any of his advice was helpful. but i'd loved my old physical therapist. we managed to get an appointment with him.

when i arrived at the appointment, i gave him my history regarding the knee injury, including the fact that when it dislocated, i wasn't moving. i was standing, perfectly still, in a kitchen. he asked me to get up and walk down the hall, and then back towards him. he watches me walk, and when i'm finished he tells me he knows what happened.

a year and a half of bullshit, and this guy watches me walk for like 45 seconds and solves the whole damn mystery. if you don't think your doctor is paying enough attention, follow your guts and see someone else.

he tells me that my hips rotate and tilt inwards when i walk. this caused my muscles to strengthen at an angle instead of straight down my legs, which caused my knee caps to be off center, crooked, and prone to dislocation.

(i will remember, after he points this out, that when i was in preschool i had a foot that turned in when i walked, and when we went to a doctor about it, he was worried about my hip muscles)

he orders imaging, and we discover i've also been rubbing the cartilage off the back of my knee cap for the past year and a half. he suggests surgery, a distal patellar realignment, and tells me it may limit my range of motion, but it should reduce the pain. i have the surgery the summer between my junior and senior years.

the surgery takes longer than it's supposed to. when i wake up, i vomit a lot, because we have not yet discovered i am very, very allergic to morphine. it's nearly midnight, and the doctors want me to stay overnight, and i just want to go home to my own bed, because i have been in this hospital since one in the afternoon. my mom takes me home, but we end up having to call the 24 hour advice line within hours because i am in so much pain. for most of the summer, i am on a strict regimen of painkillers, even setting alarms to take them in the middle of the night so the pain doesn't overwhelm me.

my recovery also takes longer than the surgeon expected. this, i now know, is typical of eds patients. i spent almost the whole summer in bed with my knee in a hip to ankle brace that doesn't allow me to move it at all. when i returned to school in the fall, i was off my crutches, but only barely, and still in a fair amount of pain. we just figured it would go away eventually, and i moved on with my life to the best of my abilities.

i go to college. i am still suffering with knee pain, though not as much. i start having episodes of intense and debilitating back pain that will later turn out to be gallbladder attacks (gallbladder dysfunction is common in eds patients). i go through a period of about a year where i faint several times and struggle with blacking out, feeling dizzy and unwell. my right ankle still bothers me. i start having general all over joint pain, especially in my knees, hips and ankles.

between late 2011 (the year the back aches and fainting start) and the end of 2016 (when a geneticist diagnoses me with eds) a whole bunch of shit happens. my mom's best friend dies. my mom has breast cancer, my grandma's health is fluctuating. i am living in southern california, miserable and incredibly depressed, struggling to force myself out of bed most days. i leave my school, go home for a semester, and decide to transfer. i move to oregon. i change majors. my emotions and mental state improve but i am struggling more physically. i end up in the er with a gallbladder attack, and end up having it removed later that first semester in oregon. when i wake up, i cannot stop vomiting, and this is when we realize i am allergic to morphine. i go on meds for depression and anxiety. one makes me so tired i am missing class because i am physically incapable of staying awake. the next one works better, but causes me to put on weight.

things reach a breaking point in the middle of 2016. i have a painful red welt on my left shin, near my surgical scar, which one doctor tells me is bursitis. another doctor tells me it's a hematoma. my pcp back in california tells me, after i send her a picture, that there is no way that's a hematoma and i need to go back to the doctor. the red welt swells, spreads, and causes me intense pain. i see multiple doctors and have a million blood tests and imaging tests. i am in so much pain i have trouble standing, let alone doing much else. eventually, months after i first went to the doctor, a rheumatologist tells me i have idiopathic erythema nodosum and gives me a prescription for prednisone. it gets rid of the welt on my shin, and the one that later formed on my ankle and sent me in tears to the urgent care, desperate for pain relief. but it makes me miserable, and it makes me starving.

the erythema keeps coming back, and i keep getting put back on prednisone. eventually, i have to change my birth control, because estrogen sensitivity to my combo pill could be causing the flare ups. i go off my psych meds. i switch to progestin only birth control, and it makes my body ache, but the welts stop. i get onto a different medication, but the weight gain damage from lexapro and prednisone have been done. in the time between my fainting episode and the clearing up of my welts, i have gained over a hundred pounds.

i started reading about eds during the time when doctors were trying to figure out what the hell the welts on my legs were. i read down a symptom checklist, and it was like a lightbulb went off as all these random things about my life started to make sense. i mention it to the rheumatologist who diagnoses my erythema nodosum, and he doesn't write me off immediately. i go home for christmas, and i mention it to my pcp. she refers me to a geneticist. the geneticist listens to everything i have to say, asks my mom and i questions about my medical history, about our family.

he does not mention my weight until the very end of the meeting, after he has already diagnosed me with ehlers danlos syndrome, hypermobile type. he is the first doctor i have ever seen who seemed to understand that while, yes, my weight probably did contribute to my pain, the relationship went the other way as well. my constant mysterious pains growing up made is difficult always and impossible at times for me to exercise. i struggled with medications that made me gain weight, and with what foods my body would let me eat. he gently suggests a few safe exercises that might help ease my pain, and that's it.

so i was diagnosed with eds in december of 2016, and it is now march of 2019. i am 25 years old. i graduated from college with a bfa in creative writing. i live with my very understanding partner of nearly 7 years. i work part time. i used to work full time, but it ended up being too much strain on my body. i am still in pain, every day. my feet, ankles, knees, and hips give me trouble all the time, and my shoulders, ribs, and hands have also begun bothering me in recent years. i do my best to eat healthy, and do the exercise i can (essentially just walking and swimming), but i don't always have the energy or strength for these things.

i often feel out of place in the chronic illness/disability community, especially the eds community, as a fat person. the 'marfanoid' (tall, thin, long limbs and fingers) body type is even considered a symptom of eds. i am just barely 5'4 and no part of me could be called long or skinny. my stretch marks, while numerous even for a person of my size, do not count as diagnostic criteria because i am fat. when i go to a new doctor and tell them my entire body aches, and that i have this chronic condition, this genetic condition i cannot control and have had my whole life, their first suggestion is still, always, to lose weight.

i am not completely oblivious. knocking off some pounds would ease the strain on my joints, yes. this would, probably, help ease my pain. but it's hard to count calories and go swim laps when just after a five hour shift at work, my entire body feels like it is moments from falling apart.

weight is not an indicator of worth. weight is not an indicator of health. and health is not an indicator of worth. i will always be sick and i will always be fat, and it would behoove society as a whole, and especially the world's medical doctors, to think of ways to help people like me besides telling me to magically drop half my body weight when the only exercises i am allowed to do are weight machines, ellipticals, and swimming, and some days the pain and fatigue are so bad i can't even eat, let alone cook a healthy meal.