The Dangers of Disbelief

I always hated Tinker Bell as a child. I dressed up as her for my first Halloween, or rather, my mother dressed me up as her. I loved her poofy shoes and I loved that she was a fairy, but I mostly thought she was a bitch. She really dies if someone doesn’t believe in her?

But then I slowly became her as my childhood filled with other’s disbelief. The more they didn’t believe, the sicker I got.

As a kid I thought it was just karmic energy punishing me. When I was in the first grade, my mom would put a little bag of baby carrots in my lunch. Every day. And every day, I put those baby carrots directly in the compost bin. Carrots, in any form, and steamed broccoli were both my archnemeses, and my mother knew it. But every day, they were in my lunch pail, and every day they ended up as food for worms.

So, every day my mother would stand me and my brother next to each other after we arrived home from school and ask if we ate our carrots. Cooper would almost immediately burst into tears and confess. I, on the other hand, would wait for his cries to die down to tell my mom that yes, of course I had eaten my carrots. I’d give her a sweet smile and she would ask me again.

I always held strong in my answer, but Cooper held strong in his obedience and would rat me out.

“No, I saw her put them in the compost,” he’d say from time to time.

Then, I’d have to admit what I had done, and my mother took away all of my stuffed animals and left me with a promise of more carrots every day.

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My mom is a caretaker, first and foremost. Every morning of my childhood, my mom would meet me at the top of our stairs. I would hop on her back and she would sing “Chocolate milk, warm it up, only in the morning!” in her off-key voice as she carried me down the stairs. We would cuddle on the couch or sit on the carpet playing with Polly Pockets, her well past her first cup of coffee and me clinging on to my warm plastic sippy cup of milk.

She was a stay at home mom until the 2008 recession, and even after she started working again, she still treated mothering like a full-time job. In elementary school, she was always the class mom for both me and my brother: she volunteered for all the field trips; she always came in to teach for the volunteer art program; and my favorite role of hers was running the Scholastic Book Fair every year. I rejoiced in bragging to my friends that my mom was in charge of all the chemically scented markers and the hundreds of books, all with their new book smell.

In regard to my health, she was just as involved. She knew my pediatrician's phone number by heart. Every time we went into the office it seemed like she was great friends with Dr. Halaburka; they would talk about their lives and my doctor would talk about her children and my mom about my brother. If I could still take her with me to the doctor, I would. She does a great job of doing all the talking, and as someone who was around me all the time, knew my problems better than I did.

The best, and also worst, moments with my mom were when she really took care of me––sick me.

I started having regular health issues when I was about four years old. It started with a cold that led to restricted breathing in my sleep. It got so bad that I had to have my tonsils and adenoids removed. I remember the hospital very vaguely. My mom told me that I spoke some panicked loud gibberish as the anesthesia did its work to knock me out, and it scared her half to death.

My favorite part was the aftermath. I got to live off a diet of sherbet and cream of wheat for days—my childhood dream.

My throat healed normally, but after the surgery my gut never seemed to be the same. Lots of nights throughout my childhood, I would spend hours on the toilet or sitting on the floor of the bathroom. My mom sat through it all with me. She would kneel on the linoleum beside me and rub my back to try and help the cramping.When it was really bad, she would hold me in her lap and rock me back to sleep in front of the toilet or on the rolling chair that lived in the upstairs landing. I got to use her plug-in heating pads and tuck in between her and my dad in their bed.

When I was about five or six years old, my mom took me to a gastroenterologist that was recommended by my pediatrician. The receptionist told me I had a pretty name and the doctor had special exam table paper that had tic tac toe boards printed on it. My mom and I filled the whole sheet with our mostly tied score games.

The doctor figured I must be lactose intolerant and have irritable bowel syndrome. I was told to take lactose tablets before I ate dairy and was sent on my way. I took the tablets and kept having stomach issues, but after a while I learned to live with it. It just happens to some people, I thought, and there wasn’t anything I could do about it.

That wasn’t the end of my health issues, though. I was quick to get colds and always had a runny nose. It felt like I was always in the nurse’s office of my elementary school, calling my mom to tell her I was feeling sick or that I had a fever. When I was ten, my family went on a spring break vacation over the mountains in Santa Cruz. I had been feeling unwell but was so excited to spend every day at the beach and on the boardwalk that I ignored it.

As it turns out, I had walking pneumonia. If I thought my health issues were bad before… That’s when things really changed. A few months later, I would get my first period. A year after that, I would start feeling depressed. My gut issues would only get worse.

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When I was fourteen, I began to have this ever-present pain in both of my ankles. I noticed it most when I swam. I had just started high school and was in the top tier group of my competitive swim team, where I practiced six days a week and three hours a day––five on Saturdays.

For a few months, I pushed through the pain. I was used to occasional odd pains from my many years in swim, and even more used to pain in my ankles. By that age, I had sprained both my ankles more times than I could count. A bouncy house accident even once left me with torn tissue in my ankle. On top of that, I was at the height of my eating disorder. I had just started a vegetarian diet and was most certainly not getting enough vitamins and nutrients, and it gave me another reason to ignore my ankle pain. Maybe I just needed to eat a banana or take an iron pill—my mom said I just needed more water.

At a certain point, I couldn’t take it anymore. Every push off a pool wall, every dive off a block, every flutter kick of my feet, even just standing began to hurt. I still went to practice every day. I had my own lane and a specialized set that I could do alongside my teammates until my ankles hurt too much to continue.

I went to a podiatrist to try to understand why I was having intense pain without an obvious injury. Swimming is a low impact sport, and I hadn’t sprained an ankle in at least a few years. The doctor ordered x-rays for both feet, examined them and found nothing, and gave me hard plastic insoles for my shoes.

Eventually, I had to quit swim altogether. I went back a few times a week to help train the youngest age group by getting in the pool to demonstrate technique, but even that hurt. I went back to the podiatrist a few months later after the pain continued to grow exponentially. The doctor recommended I get 10,000 steps a day and that I lose weight since I was no longer swimming. He said it would be a starting point––not a solution, but it wouldn’t hurt to try to lose weight either. Maybe it would take pressure off my ankles. Just to be sure, the doctor ordered more tests.

First, we did some in office tests to check my range of movement. After walking around on my tip toes and bending this way and that way, the doctor told me that I had hypermobility syndrome. It meant that my joints could move beyond the normal range of motion and was probably the cause of my clumsy childhood ankle sprains. From there, the doctor ordered two MRIs, one for each foot, and scheduled a follow up to go over the results.

Like the x-rays, the MRIs showed nothing unusual. We were at a bit of a dead end.

Around the same time, both Cooper and my mom were going to a physical therapist––Cooper, because of a volleyball injury, and my mom, because of a bad neck. I managed to get a referral from my general practitioner (GP) and started twice weekly appointments.

Physical therapy (PT) was and probably still is the best treatment I’ve ever received. Drew, my PT, couldn’t give me a diagnosis. He could, however, tell me that there was obviously something wrong with my feet. He measured how far my feet could rotate and told me it was most certainly not enough. Particularly for a swimmer, and especially because of my hypermobility, my ankles should have had a much better range of motion. When I stood straight and closed my eyes, I would fall over, unable to balance. From the tests, he could see that my growth plates had closed, meaning I had grown as much as I ever would. With all that information, we were able to formulate a plan to try and help stop my pain, even just a little bit.

After about a year of PT, my GP gave me a referral to a Stanford Children’s Podiatry specialist. He couldn’t see anything amiss from the tests I already had done, so he ordered a full body scan. A full body scan is a type of CT scan that looks at every part of your body, head to toe. I went to the hospital to have the test done. A few hours before the scan, I had to go see the radiologist so they could inject the contrast dye in through an IV. Apparently, it would show what areas were in the most pain. After waiting for the dye to settle, I returned to the hospital and spent what felt like hours on a flat table while a large donut took pictures of everything.

Like all the other tests, the body scan didn’t really show much. The doctor acknowledged that I was experiencing pain, and that the dye was focused on my metatarsal bones below my ankles on both feet. He still didn’t know why I had such pain. This time, I got a referral to an adult specialist from Stanford who had a very long waiting list, but that meant he was the best they had to offer. I got an appointment a few months out and continued with my physical therapy, not expecting anything from this next doctor.

After almost two years without an answer, I was resigned. But I went through the motions with the new specialist, as with every other appointment. Check in at the main desk. Go to the specialist’s desk. Check in again. This time we brought a fat file filled with pages of tests and disks with MRI images and packets with lots of lines and numbers and results, so they don’t ask for anymore. Fill out a form that the doctor never reads. Let my mom do most of the talking. Follow behind the nurse and robotically step on a scale, stand straight, stick my arm out for a cuff, open my mouth for a thermometer. No prompting needed.

In the office, another nurse asks me all the questions my form could have answered. Then a medical student came in to see me, asking all the same questions. The doctor came in and asked few questions. He had already actually looked at my file––a first. He went on his computer, pulled up an x-ray (the very first image I’d had taken when all of this started two years earlier), zoomed in, and pointed out a spot on the top of my foot.

“Your bones never separated here,” he said as he pointed to the same spot the body scan highlighted. He explained that I had a growth deformity in the same place on both feet. As I was growing as a child, two tiny bones on my metatarsal never separated to form a joint. The left foot had a more serious fusion, so the left foot they would fix. This was a problem they could fix. They could only fix one because the surgery would leave me too weak to support the other foot’s surgery. But one foot was better than neither.

An answer. A feasible solution to a real problem. A surgery date set.

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Around the same time as the start of my foot pain, I started going to weekly therapy with a child psychologist. I went to her as a component of the weight loss study I was a part of for my middle school years. For the first few months, we stuck to easier topics: whatever new YA novel I had read that week, how I felt about not swimming anymore, how my freshman year was going and how my school friends were, maybe only one thing that would make me cry in our hour long sessions.

Dr. Colborn worked hard to gain my trust. When I first started going to sessions, I was beginning to feel as if maybe I was just making everything up. I could just choose not to be depressed or choose to eat normal structured meals. Choose to push through my pain in order to lead a normal, productive life. Once we settled in, she asked about the hard stuff: how my anorexic behaviors evolved into binge eating disorder, the hollowness of depression, how my dad taught me to repress my emotions as a child, my ‘snowballing’ thoughts, that I felt so utterly disbelieved that I stopped believing in myself.

It was the first time I felt truly seen by a doctor. I thought that maybe she was just telling me what I wanted to hear, but it felt better than always hearing the opposite. She could tell, so she focused on logistics and facts. I was put in the weight loss study because of my high BMI; when I started the program, I was questioned thoroughly by the other age thirteen and below kids. Why are you here? Every time we shared our journaling, they asked for my secret to getting over 25 hours of exercise in a week. None of them were athletes. I questioned what more I could do to have the success the study wanted.

Dr. Colborn explained all the flaws of BMI. It was created in the 1830s. It doesn’t take into account muscle versus fat, even though muscle is 18 percent denser than fat. People in the “overweight” category on average show better health and have a longer life expectancy. It was created from research done on men only. We agreed that my doctors had made a mistake. I felt validated.

Eventually, she taught me how to recognize and accept my emotions. She gave me permission to be angry, to be lonely, to be sad without any reason. I was allowed to have moments of happiness even though I was depressed. I sat in her rolling chair and fidgeted with my sleeves while staring at her poster of black and white cartoon faces with various emotions and she made me feel like maybe I wasn’t a burden.

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I got my driver’s license a year late because of my foot surgery, but as a senior I was able to drive myself everywhere. That freedom meant that I had to be responsible enough to drive to school every day. My parents almost always left for work before I left for class, so they couldn’t be there to wake me or remind me to leave on time.

One morning, I woke up feeling sick and took my temperature. I had a fever over 100º, so I filled out my school’s online absence form for illnesses, texted my mom that I had stayed home, and went back to bed. Neither my mom nor my dad was that accessible once they were at work. I got an angry text from my mom around eleven, and she called me as soon as she went on her break.

I understand why she was so upset. I do. When senior year started, I got a summary of all the absences I had from the year prior. I had a three-month mono spell junior year and I missed enough days to have an assistant principal pull me aside to scold me.

So, to miss another day when I had already missed plenty during my senior year, would be a cause of anger for my parents. I was supposed to save my sick days for the mono level sickness. I couldn’t afford to waste them on the mediocre. But the school day was already halfway over, and I had already submitted the form.

My dad called me shortly after and I could have sworn he said he had never been so disappointed in me. He only remembers saying he was disappointed, that he would never say that. I believe him, but that wasn’t what my head told me he said at the time. I was on a new antidepressant that gave me nightmares and made me feel angry any time it didn’t make me feel empty. When he told me of his disappointment, I could only feel the same way. Disappointed in myself.

I was hysterical, hyperventilating in my bathroom. I closed the door and slid down to the floor in a very cinematic manner. Everything hurt. It wasn’t enough. I grabbed my razor and let all five blades cut across my wrist twice. The cuts were superficial and barely bled, but I regretted it immediately and washed out my arm in the sink. I wrapped up the cuts with gauze and called my friend who I knew was already on campus.

“I fucked up. I fucked up. I’m so sorry. I fucked up.” I knew I couldn’t stay home, and he told me to come to campus. Lunch was just about to start, so if I left right away, I would get there just as the last class of the day started. My friend was currently in the class that I would have for last period and asked me if it was okay for him to tell our teacher. I said yes because our AP Lit teacher already knew that I was struggling. I had cried in his class enough to warrant a discussion about my depression.

I told my mom right away, focusing on how I knew it was wrong to do and I regretted it so much. I was okay and wasn’t going to do it again. I told her I was going to campus because I didn’t want to be home alone.

I walked into class a bit late and the teacher, Mr. Patterson, brought me back outside so my classmates couldn’t see me cry. We talked for a little bit while he walked me over to the assistant principal’s office. He couldn’t stay with me long because he had a two-hour class to teach, but said I could come back to class after I spoke with the AP.

The assistant principal asked me why I’d done what I’d done. I told her I was disappointed in myself for missing another day of classes, so she had me write letters to all my teachers along with letters to my parents apologizing. After that, I went back to AP Lit and zoned out in the back of the class.

Even though I drove myself to campus, my mom came to pick me up as soon as she could. We went home and made calls to both my psychologist and psychiatrist. I got my meds changed and went back to weekly therapy appointments rather than biweekly appointments.

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Usually, I went to all my doctor’s appointments with my mom. This time, my dad accompanied me to the GI for another appointment. It was the summer of 2016. I was seventeen years old, had recently graduated high school, and was weeks away from leaving for college. For a long while I had actually stopped going to any GI doctors. I regularly saw my GP and brought up all my problems with her––why go to another specialist when she could do the same nothing that they could?

But my severe diarrhea had lasted for months and I felt like I was slowly deteriorating from the inside. I knew things were getting worse when I visited Cooper at SDSU. When I first arrived, I was furious that he didn’t keep toilet paper in the house. He and his roommates apparently only used flushable wipes. But then I was hunched over inside his bathroom and I realized something was wrong, more than his lack of my necessities.

The one good thing about having my dad accompany me was his intimidating presence. My mother can also be a terror when it comes to her children, but there was something about my dad that made people listen. He was the plan b when the doctors wouldn’t listen to my complaints because he had a way of demanding results.

My father’s demand for results ended with a demand for a stool sample from the doctor, but I’d already gone in the office bathroom before the nurses called me in. They suggested I go eat and come back before five. He bought me an apple and a muffin in the lobby. We waited for maybe ten minutes before we got bored and decided to go across the street to the outdoor mall full of wealth and extravagance.

He comforted me with stories of his own poop problems as we walked around and received glares from shoppers and security guards alike. I had gotten in the habit of wearing only pajamas or sweats to make the stomach cramping as painless as possible. I had always worn my dad’s old shirts to bed, but now I wore them to go out too. The sleeves were long, but not long enough to hide the gauze and bandage at the crook of my elbow. The circles underneath my eyes were deep and I had a yellow tinge to my skin from a lack of vitamins.

You would think the elite of Palo Alto would be used to sick kids with both the children’s and general hospitals right across the street, but maybe that was why they glared.

I didn’t really care with my dad as my protector, and we even went through the entire two-story American Girl doll store. We reminisced about all the things we recognized from my childhood obsession with the dolls and we inspected the toy VW Bug that was relatively new to the collection. My dad comforted me in a time where I couldn’t feel comfortable in my own body.

A week later, my mom got a call from the GI with my results. I had confirmed celiac disease and needed to start a gluten free diet immediately. We would have made a follow up appointment, but only a few days later I was leaving to start my freshman year of college.

I thought that all my problems would be magically solved with the diagnosis. It explained my gut issues and the “autoimmune” part seemed to solve everything else. What I didn’t know was that living with a chronic illness wasn’t just as easy as changing my diet.

I found a doctor at UCI Health who took our insurance and he just went over the basics of celiac disease. In January, I had an endoscopy and biopsy of my throat and stomach to further confirm the diagnosis. I knew I had celiac; I didn’t know all it entailed.

It’s different for everyone. Some people just need to eat things that are made without gluten. That is the basis of what both doctors told me. When my diarrhea continued through my freshman year, I knew something else had to be wrong. I tried eating in the on-campus dining hall because everyone is required to purchase a meal plan, but they were reluctant to accommodate me. I always felt like a burden when I went in and asked for a manager. The dining hall was brand new that year and was constantly packed. I got by on hamburger patties and salads from the salad bar. I still got sick.

I started working as a food service worker at Disneyland in February. I worked at the French Market filling up bread bowls with corn chowder and making French dips.

Nobody told me that cross contamination was going to be an issue. I didn’t know that when the kitchen staff toasted buns in the same place they grilled my burger, I would be eating the gluten particles the space had shared. I didn’t know that the restaurant I worked in had gluten particles in the air, and I didn’t know I was breathing them in during my eight-hour shifts.

When I told the managers of my restaurant, they told me I shouldn’t have taken the job in the first place. If I knew I was sick, it was my fault for staying and they didn’t have to accommodate me.

I returned to the doctor and got him to explain that celiac disease is more serious than I was treating it. It felt to me as if he was the one who wasn’t treating it seriously, but I nodded and smiled so he could fill out my medical leave form for work.

I was able to transfer out of the role at the restaurant to ride operations across the park, but the dining hall never did anything to help. My mom and I spent months trying to figure out why it was so difficult for me to get the food I needed there. We talked to the company that supplied the food to UCI’s dining halls. We talked to the school. We talked to the disability center. Nobody could

solve the issue.

The solution I got was to formulate and plan all my meals in advance. Pick out what I wanted for every meal and email it to the managers at least a few hours in advance. It may have been a solution, but it wasn’t one that was sustainable to me. I had odd work hours and was new to living gluten free, not to mention I was not a cook, nor did I have time to formulate every meal from their list of gluten free foods.

In the final quarter of the year, we got the dining hall to lessen my meal plan and I mostly ate out or tried to cook in the dorm hall kitchen.

The next year I lived in an apartment and thought everything would improve. I had three other roommates and didn’t realize they would be so ‘glutenous.’ One day I walked into the kitchen to see one of them using my toaster, and I had to throw it away. Do you know how many crumbs fall in a toaster? Toasters are my worst nightmare.

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I once had to walk down five flights of stairs of my dorm to get to an ambulance waiting for me. 3AM is a cold hour in a concrete building with concrete ceilings and concrete stairs and an elevator that only worked when I least needed it.

I’ve been through a lot medically, but only a handful of times have I experienced that ten out of ten pain.

It was the final week of spring quarter freshman year and I was half asleep in my bed when I felt a stabbing pain in my stomach. Earlier, on my way home from work, I threw up while I was on highway 55 in the fast lane. Luckily, I was able to keep it down long enough to shake out the contents of a small Disney shopping bag left over from my workday. I threw up in there.

I panicked and called my mom while still on the road, exiting near what looked like the world’s tallest Del Taco sign and pulling into a post office parking lot to throw the bag away. Throwing up is a rare occurrence for me, by the way. I almost never threw up as a child unless I was in severe pain or if I had a particularly phlegmy cough. When I was maybe seven or eight, my parents almost took me to the ER because of severe stomach cramping, but after two hours I was able to throw up and fall asleep.

At this point, I was used to the pain of a cramping stomach. Between polycystic periods and celiac cramps, stomach pain seemed normal. Throwing up––decidedly unusual.

My roommate helped me down those five cold flights. We were both in our pajamas. She was drunk and I was shivering at the cold windy night. We waited on a bench just outside the building, as the on-call RA told us to do. He called 911.

The fire truck showed up first and the ambulance followed shortly after. The firemen asked generic questions and took my blood pressure while the EMTs set up a gurney.

How the ride went or what the EMTs said eludes my memory, but I remember that the lights inside the back were off––as I said, 3AM––and I remember the rocking of the gurney as the vehicle turned. There were no sirens, but I remember the flashing lights.

My roommate came in the ambulance with me, but I didn’t listen to the sounds of her conversation with the EMT. I guess I was too busy thinking about how the straps holding me in place felt and how the wheels on the gurney didn’t lock in place.

The ER ceilings seemed low when I arrived. Maybe my gurney was just tall.

After I got an IV in and a morphine pump pumping, things got fuzzy. J, my roommate, sat with me and complained about her boyfriend to distract me from the pain. Nurses came in and out for a few hours taking a vial of blood here, a check of my vitals there. They replaced my fluids when my body sucked the bag dry.

Then I remember a female doctor, younger than I expected, telling me it was heartburn. I thought to myself that to come up with a diagnosis like that, she must either be suffering from exhaustion from an overnight shift or she must be a bitter soul, like so many doctors I’ve consulted. I knew it was not heartburn. I’d had heartburn before. Now, I had specific pains and a distinct lack of burning, and I knew. But for them, I was low priority. They kept me there, moving me around from center stall to corner room and finally to the hallway.

I continued to point out to them that my mother had boarded an early morning flight and would be there shortly. Once my east-coast mother arrived with her wrath and command, the ER staff ordered a CT scan, followed by a simple urine test, and they discovered I had multiple kidney stones. And a kidney infection. The news was presented by a nurse; the heartburn doctor didn’t bother stopping by again.

Exactly one week later, I had that same stabbing, middle of the night pain. This time, I couldn’t stop throwing up. Every horse pill of pain medication from the last ER trip that I tried to swallow ended up in our dorm toilet stall. I had a friend drive me to a different ER, and I threw up until I had no more to throw up.

This ER trip was considerably easier on my sanity because we already knew the cause. My mom flew in once again and this time the hospital arranged a next day appointment with a urologist. He was able to tell me that as someone with celiac disease my body has an excess of calcium and I should also stop taking vitamin C.

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I think a lot about pre-diagnosis me and how I felt about not being believed—about not having anything visible to tell people “Hey, she is sick.” When I was first diagnosed, I thought everything would change. It did, but it also didn’t. Even in the ER I was treated like I was the girl who cried wolf. Was it suspicious that I knew so much about my health? That I knew my recent blood test results? I could still list off all my diagnoses and procedures while in my supposed ten out of ten pain. That is what hypochondriacs do, right?

Honestly, I thought so. I was taught so.

When you spend twelve years surrounded by people questioning whether or not you’re telling the truth, you start to think your own brain is making everything up. You only say you have a problem because you want attention. Don’t want to be depressed anymore? Decide not to be. Go on a walk. Do a stretch. Take your vitamins. You’re choosing to not get better. It’s your own fault.

And technically it was. My own body was doing it to me, but not because of some manifestation that was all in my head. My parents decided to have a baby and my mom’s worst DNA mixed with my dad’s worst DNA to make me. Then my body decided to attack itself. It isn’t my fault my insides are stupid.

Almost two years passed before I really settled in to being disabled. Even now I struggle using the word disabled to describe myself. I know for myself that I am disabled, but I like to use the more obscure terms of autoimmune disease or chronic illness to describe my health to others. Almost every time I mention celiac in a conversation, I get an abundance of follow up questions. I don’t want to have to add all the discourse that comes with discussing visible vs invisible disabilities. I hate explaining any health issue at this point because none of them can be summed up in a few words. My life would be so much easier if everyone intrinsically understood all the problems I had.

I felt that acknowledgement, that unspoken conversation you have with someone, after I had surgery on my foot. For weeks, I rode around on a four-wheel drive knee scooter with a thick skin colored cast covering my leg from my toes to my knee. Everywhere I went, it was like I was Moses, the blue scooter my staff, and the seas were parting for me. My classmates moved desks and the teachers re-arranged seating charts. I didn’t have to open a single door. People came up to talk to me for the first time in years, all to make sure I was doing okay.

The only class I didn’t get special treatment in was AP Calculus BC—a class I am certain is curated in the depths of Hell. The day of my surgery I had to facetime my friend from the class to take notes for the three-hour lesson. My mom had to prop me up on our pullout couch and set up a T.V. tray table with all my school supplies, but I digress.

I was still using my scooter on Halloween. I had just gotten the cast cut off a few days earlier and it was replaced with a hard black boot. I was still unable to put any pressure on my foot. Halloween is, hands down, my favorite holiday, so I still went full out on a costume. I dressed up as Cher Horowitz from Clueless, thigh high socks, plaid yellow skirt suit, and all. But where I first was Moses, parting the sea, I was now Noah, under floods of rain. I tried to stay under awnings and between buildings, but on my way to fifth period English I was stopped by puddles on all sides. The only way to get to class was to get soaked by the torrential downpour.

A girl that was in my class, who I went to school with for six years and barely ever spoke to, saw my dilemma. She came over, held her witch hat over my boot, put her cape over my head, and walked me to class.

All the great treatment I received while with my scooter or wearing my boot came from people thinking I was injured. A broken leg or something that would heal and go away. When those visual cues went away, the treatment went right along with it.

It felt good to be seen, but it felt worse when I disappeared again.

Now, the only visual cue I have for my celiac disease is the reusable mask I wear in crowded public spaces. I don’t want to be seen when I wear the mask. Everyone stares in the worst way.

You can’t catch a leg injury, but you can catch whatever she is hiding behind that mask.

When I accepted my disability, I had to acknowledge that others wouldn’t. I had to prioritize what I knew over what other people thought. I see my lab results and medical records that prove it, but they don’t.

Just because they don’t see me doesn’t mean I am not there.

Once I really learned everything I needed to know about my celiac disease, I was able to accept truths about my life. When I was first diagnosed, I didn’t bother looking into it. The doctors told me to go gluten free, so I did. And I thought all my problems would be magically solved. They weren’t. Problems could get better, maybe, but go away completely? I had to learn that they would never disappear.

Whenever I tell people I have celiac disease they apologize for how horrible it must be.

“I could never do that. I love bread too much. I would probably just deal with the consequences.”

No, you wouldn’t. You would go gluten-free because the alternative is so much worse. I went twelve years with symptoms of celiac disease before I was diagnosed. After ten years without a diagnosis, celiac disease, untreated, raises the likelihood of other illness. Cancer is the big scary one: lymphoma, colon, intestinal or esophagus. Type I diabetes and MS. Infertility scares me still. But as soon as you eliminate gluten from your life the chances start to decrease.

My whole life is different now that I have a diagnosis. I’ve had plenty of panic attacks about how different my future will be because of it. Any partner I have will have to be gluten free. If I can have my own kids, they’ll have to live a gluten-free life too, and I might pass the disease on to them.

I’ll be sick forever.

I had a college professor who once asked me to give him advance notice whenever I was going to miss class due to illness. I didn’t know how to explain to an English teacher that the chronic part of chronic illness means it is always there. I can’t predict when it will flare up. I can’t predict when I’ll need to skip events or rush off to the bathroom or not be able to get out of bed.

I got better once I accepted that I’m never really going to be okay. And that’s okay.