embracing this 'new body': navigating an invisible disability
i cherish my body. every time i look in the mirror, i thank God that this is the vessel i reincarnated in during this lifetime. so when my body’s functionality began to betray me in late march, i couldn’t help but wonder if taking away my able-bodiedness was a way for the universe to humble me. as i write this, i recognize that i have to stop viewing random things that happen to me as punishment of some sort. not everything is related to karma, but i’ll save that for another post. i also began to wonder why my life path insists on being excruciatingly painful and this hard. why is the constant theme of my life pain? and why does it seem like i can’t escape bad things?
i have…
so many sad stories. so much trauma. so much stress. so much pain, first emotionally now physically.
i also have…
many things that i used to pray for. great friends. a beautiful family. a therapist that teaches me more about myself every time we speak.
i know that i write this in every piece, but i remind myself of these things everyday because i practice gratitude. gratitude helps me move forward. gratitude lifts my spirits. every time.
but anyways back to story time.
i tried to ignore it at first. i would wake up and have difficulty walking to the living room. it would hurt to bend my knees to sit down. i’d overdose on advil and feel okay until the next day. one night, i woke up and my whole body felt inflamed. imaginary needles were poking at me. everywhere. my insides were burning up. i couldn’t turn in bed and when i got up, the floor was glass. the next day, i couldn’t turn my neck. i googled my symptoms and self-diagnosed myself with rheumatoid arthritis, an autoimmune condition, that only affects 1% of the population, and is highly uncommon in people under 30. i didn’t want to believe i had it because google is normally wrong, but there was nothing else that fit the description of my ailment.
i moved back home for the month of May because of my unstable living condition and it actually turned out to be one of the best decisions i’ve ever made, an unforeseen blessing if you will. on the second day of my time at home, i realized that i could barely move my knees. i started limping around the house and could not explain to my parents what was going on. all i could say was that i was in an extreme amount of pain and it came out of nowhere. by the end of the week, i could no longer get out of bed. i would grasp at the end of my bed in order to get up. sometimes i’d call my sister to hold my hand so i could launch myself into the air. my knees could no longer support my body weight. i was afraid that i would fall every time i tried to get up. i relied on advil to regain my mobility. i would wait for it to kick in so that i could go on a morning walk. during the walks, my shoulders would start hurting. it got to a point where my whole body was hurting consistently. i also felt sharp pains everywhere. it took me forever to fall asleep because i couldn’t move my neck. my condition was so unbearable that i couldn’t put the pain into words. each day felt worse than the day before. i was fatigued, so i began sleeping all day. i lost my appetite as well. i lost fifteen pounds. i went from 135lbs to 120lbs within a month. i couldn’t look in the mirror. i couldn’t take pictures. i became a fraction of my teenage sister. all of my pants sagged off me and i hated going outside because i looked so frail.
my family did everything they could to help me. my mom and sisters rotated cooking for me. my little brother would do small but very meaningful things like tuck me into bed because i couldn’t lift anything with my fingers. for the first time in my life, i felt warmth from my father when he spoke to me. in the time that i spent physically hurting, i was able to do so much emotional healing with my family. it’s crazy how trauma can bring people together. when i would pray with my family, i gave up on sitting fully on the ground because my knees wouldn’t allow it. i told my parents i couldn’t move comfortable and began completing my daily prayers in a chair, something really reserved for the elderly. then i just started skipping prayers because it didn’t feel like God was listening anyway.
i wasn’t against going to the doctor by the way. i had a fear of hospitals because i got sick at the peak of coronavirus cases here in nyc. but when my hands stopped working though, that was the confirmation that i needed to get help immediately. i booked an appointment with a local rheumatologist. i couldn’t write. when i picked up a pen to write in my journal, my hands were shaky and my handwriting was illegible. i couldn’t hold my phone properly, and i couldn’t open anything by myself. i started panicking and started thinking of the worst case scenarios. as a writer, my hands mean so much to me. by the time i went to the doctor to get diagnosed, my toes and fingers were swollen to the point where she suspected that I had RA before even ordering the blood tests.
i cried every other day for 30 days. not even soft and silent cries. ugly sobs that made everyone in my home pity me. i felt helpless. my mother tried to comfort me with statements like “sometimes God puts people through things” and “you will be okay”. both things are true, but they offered me no relief at the time. i was so ashamed to be 23 and disabled. i had worked so hard to gain my independence and to show my parents that i was making something of myself just to come back home and not be able to do anything by myself or for myself. i felt defeated. normally most of my suffering could be traced to something i did, but not this.
i couldn’t even bend my knees to sit on the toilet. i squatted for a month and a half. i was going through so much and i barely told anyone. i told my friends some shit like “my legs have been hurting recently”. i didn’t want anyone to view me as weak. i’m still struggling with caring about how i am perceived as i write this. i know that i am not weak and neither are disabled people. i also know that i am not currently disabled, but i was for a short period of time. my illness is invisible because you don’t see it when you look at me and you would probably never guess that i can’t even open pill bottles or wine bottles anymore, but it is very real.
here is a reminder to practice kindness because you never know what people are going through in private.
here is a reminder to dive deeper than “how are you?” when you are checking in on your friends. ask them questions like “what’s new?”, “any life updates,” or “has anything changed recently?” make it easier for your friends to be vulnerable with you.
here is a reminder that life comes at you fast. things can change at any instant and not everything is your fault. live to the fullest. every day if you can.
i’m no longer in an unbearable amount of pain or much pain really. i get random sharp pains sometimes and that’s about it. i probably won’t ever be able to open most things without struggling for five minutes, but that’s okay, my knees work again; i can write, and for that i'm grateful. my life has changed drastically and now i have to navigate this world with this condition that sprung quite literally out of nowhere, but that’s okay. i never had to take meds before and now i do, but that’s okay.
here is a reminder that pain is temporary. if things are not okay now, they will be soon. from rock bottom, there is always a beautiful view, you just have to climb out to see it.
i accept that this is the body i was given so this is the body that i will work with. chronic illness is shitty. there is no other way to describe it, but many have lived happy lives with it, so i won’t let it define me.
a friend of mine who suffers from chronic illness told me that i have to learn how to re-love my body, so this is something i am working on. sometimes, i’ll just randomly think about how i have rheumatoid arthritis at 23, and i’ll just start crying. it hurts to have your body reject you. this is a type of rejection that nobody prepares for you and it is so very unfamiliar.
i stumbled down a rabbit hole when trying to figure out why this happened to me and found that there is no answer. no one knows what causes chronic illnesses. all that we do know is that black women are most likely to suffer from it.
BE KINDER TO BLACK WOMEN.
some research suggests that there is a genetic link, but no one in my family has rheumatoid arthritis so i had to cross that off. i did note that flare-ups, a period of immense pain, are triggered by stressful situations. i know that life hasn’t been easy for me so i know that it makes sense that my stress would have have triggered an autoimmune disorder. i don’t know if that was the cause of it, but i can’t dwell on why it happened, i have to move forward and intentionally.
because of this diagnosis, i am more aggressively committed to living a less stressful life. i took it a little too far at first though. i took the pain i was feeling on the outside and ignored everything going on in my personal life. beyond my own, i couldn’t deal with anyone else’s emotions. i just didn’t have the capacity at the time. i began to cut people off quicker than before under the guise of strengthening my boundaries, but really i was just too much of a coward to have certain conversations. i realized it then and i am writing it now to take accountability. i can’t use this condition i have to evade responsibilities and growth and i won’t.
right now i am working on:
letting people leave. some of my longest friendships crumbled during this pandemic, i let them all go. “what is meant for [me] will reach [me] even if it’s between two mountains. and what isn’t meant for [me], won’t reach [me] even if it is between [my[ two lips.” - arabic proverb.
saying what i really mean.
projecting less.
running away from experiences and people that look like lessons.
speaking to myself with kindness.
loving my body even when it doesn’t work properly.
being more honest to my friends.
i think mastering these things in my list will help me lead a less stressful life and hopefully contribute to reducing stress in my body.
this was really hard for me to write and i haven’t even expressed all of my full feelings yet. if you read this, thank you. i am doing well. please don’t pity me. life happens.
let’s all work on living more fulfilling lives and loving the bodies that we have.