"Anorexia and ARFID were all I knew; I had few memories before my eating disorder began." ©Oier / Adobe Stock
I became fascinated by psychology at age ten, around the same age that I began listening to the nagging thought in my mind: If you eat, you’ll get sick.
I grew up a skinny, androgynous child, buried in thick books and too-large clothing. I had sensory issues, and could not tolerate changes in temperature or clothing that “felt wrong,” or any aspect of the environment that I deemed “too loud,” “too bright,” “too crowded,” or “too overwhelming” in any other capacity. I was described as “difficult,” by my parents, “weird,” by my peers, and “interesting” by adults who I’d strike up conversations with about whatever I was reading or writing.
Social clues eluded me, and my mind struggled to make sense of the world around me; the expectations and unwritten rules of how to interact. I didn’t have interest in making friends; people were too dynamic and changing, and I preferred rules and routine within which I could exercise control. It is perhaps fitting, then, that I developed a phobia of vomiting, what I perceived to be the ultimate loss of control. I began struggling with anxiety and panic attacks when I was seven years old, all focused around getting sick.
Eventually, the fear of vomiting manifested in chronic stomach aches and nausea (in hindsight, likely a combination of anxiety and lack of nutrition), and I became convinced that any food other than packaged Hostess cupcakes, dry ramen noodles, and jelly beans would make me ill (I still have yet to identify why these three foods were the only “safe” options).
I quickly lost weight, unintentionally, but I was already small for my age, so it didn’t take much to land me in the hospital for malnutrition-related concerns. I had no body image issues, but what we now understand to be the symptoms of ARFID [avoidant-restrictive food intake disorder]-- fear of food making me ill, lack of body image issues, sensory difficulties, weight loss in the absence of an underlying medical condition, fear of foods other than those considered “safe”-- was diagnosed as anorexia nervosa.
I was shipped off to an inpatient eating disorder unit at age twelve; amongst adults and older teens in a barely-supervised cesspool of self-starvation, I learned how to restrict, how to count calories, how to avoid the dreaded “tube,” and why my prepubescent body, all angles and straight edges, seemed to be the envy of a group of much older individuals. I developed significant body image issues, which morphed into anorexia
Amongst adults and older teens in a barely-supervised cesspool of self-starvation, I learned how to restrict, how to count calories, how to avoid the dreaded “tube,” and why my prepubescent body, all angles and straight edges, seemed to be the envy of a group of much older individuals. I developed significant body image issues, which morphed into anorexia. I was diagnosed with ARFID at age nineteen, the same age at which I first heard the label “severe and enduring” applied to my diagnosis of anorexia.
I was diagnosed with ARFID at age nineteen, the same age at which I first heard the label “severe and enduring” applied to my diagnosis of anorexia.
The years went by, with brief stints in outpatient programs and one helpful stay in a residential program, but I always slid backward and ended up losing the small amount of weight I’d managed to gain, and my rituals, now including exercise, became more entrenched. My world consisted of counting, panicking, and academics, the latter of which I clung to like a lifeline. I suppose this brief explanation does not do justice to even a fraction of my story pre-2022.
But I am writing to discuss not the ten years that preceded recovery (maybe I’ll do that at a later time in a later essay), but to share how I managed to save myself, and ideally provide some hope to those in similar situations, perhaps telling themselves they’ve been sick “too long,” or their cases are “too complex,” for recovery, perhaps lacking access to professional help, perhaps medically compromised, perhaps beaten down after hearing from yet another person that they’ll “never get better.” Hopefully, if you are reading this, you want more for yourself than that.
" I was diagnosed with ARFID at age nineteen, the same age at which I first heard the label “severe and enduring” applied to my diagnosis of anorexia."
My recovery came from a place of self-love, but rather a last-ditch attempt to save my own life (and of course it could be argued that this is indeed a form of self-love, but I didn’t recognize that at the time. I just knew that after being told I didn’t have long left, well, I had to give it one last go.)
I have always been hyper-independent, reluctant to rely on anyone. If I was going to recover, I knew it had to be sustainable, a method that wasn’t dependent on the variable nature of others. I loved structure, I loved routine and rules. People are not static. They are complex and changing and confusing to figure out. Psychology helped me make sense of my interactions with others and gave me a context within which to socialize. I craved not to be taken care of, but to take care of others. I wanted to be the help that I wish I had been able to access for years.
But that was part of the problem. As much as I craved the structure, the routine, and the support that a treatment program provided, I was unwilling and unable to tear myself away from school and work, which both centered around my one love, psychology. As much as I wanted to leave my struggles in my tiny studio apartment in Philadelphia, leave the soul-draining routine of endless exercises and stepping on and off the scale, leave the familiar yet sickly purple and yellow of the Planet Fitness Logo I saw every morning…it would be there when I returned. I was not eligible to take another term of medical leave if I was to graduate on time, and starting a new job and then immediately seeking treatment wasn’t an option, either. I had tried that, and fought tooth and nail to re-establish myself amidst the aspects of my life that tied me to my passion. They wouldn’t wait for me.
School, work, and the career I had dreamed of since I was a child would slip away, move on without me as I languished in a treatment center that may help in the short term, but would thrust me empty-handed back into what I knew. The real world was unforgiving. The world of my eating disorder, however, the world of restriction and exercise and compulsions and rituals, that world would welcome me back with open arms, and I’d be back to square one.
In October of 2022, my body began to shut down. I collapsed while out for yet another walk and was brought to the emergency room, where I was hooked up to an IV and heart monitor that sounded an alarm every time my pulse dropped below 40. I was told that I likely wouldn’t make it to the end of the year. The toll that 14 years of malnourishment had taken on my body was too great. “I’m not going to die,” I said. “I don’t want to die.” It didn’t occur to me at the time that I may not have a choice anymore. I couldn’t think myself out of organ failure.
I signed myself out of the hospital as soon as my vital signs stabilized.
I began the long, arduous process of calling treatment centers yet again, desperate for help. I could not find a residential program willing to accept me due to my cardiac complications and low body weight. At this point, I understood the medical necessity, but the thought of being held in a hospital bed, dependent on others to provide for me, made me squirm with discomfort. That wasn’t what I wanted for myself. I wanted to do it on my own, because I needed a reason to get better, and once I was released from the hospital…then what? Then what was my motivation?
I was no stranger to the risks of refeeding syndrome. It seemed daunting, the punishment for being so ignorant as to attempt to save my own life. But as weeks passed, and I continued searching for an inpatient unit that would accept my insurance, my options began to dwindle. I didn’t want to die, but I didn’t have anything left to give to the world besides the fact that I wanted to live.
So, I applied to work for the suicide hotline.
It was a fully remote job, 988 had just been launched, and I felt a draw to the position. Ever since I was young, I have experienced considerable anxiety answering and making phone calls, but I loved the intensity of the work, loved that my voice and time could impact the lives of others. I wanted to give all I could, even when I felt as though I had nothing left. I slowly began to feed myself enough to stay alert through my shifts, and as I got stronger, I was able to consider the possibility that I would, in fact, make it to next year. I set myself a weight goal, and decided that if I was medically stable, I would submit my applications to work as a counselor at a psychiatric hospital that I believed I had no chance of working for, but that had been my “someday, if I could work anywhere” dream for many years. At this point, I would still be far from weight restored and far from recovered. I spent days writing down the pros and cons of taking the risk to apply. Eventually, it occurred to me that I was again waffling back and forth, as I had for years, creating plan after plan but failing to enact any of them because it wasn’t the “right time.”
Still medically unstable and unable to walk up the stairs without losing my breath, I understood that I still had a long way to go. I knew that if I got an interview, if I got the job, I had to push myself the rest of the way to get healthy. Employment wouldn’t make me recovered, but it would give me a reason to recover and stay recovered. If I got the job and I couldn’t keep it, then this wouldn’t be a door that would open again. Working for this particular employer and failing to keep my job due to my eating disorder was the most soul-crushing thing I could imagine. But if I got it, I had something to keep fighting for, and I could fulfill my purpose that I had imagined all those years ago.
I got the interview. And at the start of the new year, I got a job offer.
I had to adapt my environment to reflect a situation in which losing whatever was motivating me at the time was far scarier than gaining weight. Academics, as much as I’d hoped they could, would not suffice in providing the high-stakes reinforcement that I needed. Throughout my middle, high school, and college years, I’d been told “you can’t succeed in school while undernourished, you can’t devote time to your degree while you’re spending hours each day at the gym, calculating and recalculating your calorie allowance for the day, you can’t have the energy to write the substantial amount needed for your papers and projects if you aren’t eating.” But I could, and I did, and this very fact seemed to reinforce the mindset that I could survive off coffee and energy drinks and the adrenaline that came with walking 30,000 steps per day (my arbitrary “quota”).
Academics came easily to me, but everything else in my life suffered. For over a decade, I experienced little social involvement, few hobbies outside of my passion for psychology, and never a break or any type of vacation. I skipped holidays, opportunities to make friends, and isolated myself within the confines of my schoolwork, sitting, and rigid exercise routine. I viewed each day as a challenge to be endured without passing out (I was not always successful in this; I passed out quite a few times and chastised myself for becoming “soft,” pushing myself even harder the next day to make up for the momentary lapse in machine-like autopilot that I had become used to.) Punished myself for unintentionally feeling humanly exhausted.
I didn’t know how long I could keep it up, but I hadn’t crashed and burned yet. I didn’t experience the mental collapse that I was told would be inevitable. I graduated with a 3.97 GPA, and without academics and the deadlines of papers driving a seemingly endless force to create, write, and keep moving, my body began to crumble. My weight declined rapidly as the time that I spent writing, researching, and enjoying the brief glimpses of happiness that my passion brought was replaced by more time to exercise, count my steps and calories, and focus on avoiding food. I no longer needed to eat the bare minimum required to focus on my studies, so why eat at all?
But working for an employer that I’d dreamed of for years, I HAD to eat. Losing my job was scarier than gaining weight. I had to set the stakes high for myself, and create a rigid structure where none previously existed. Forced myself into a recovery that I was still unsure I wanted. I wanted to work and needed a body that could handle it. I tried to adopt the machine-like adrenaline that got me through school, through years of denying myself food, through grueling workouts. I am working to get the body I need. But this body must be healthy enough to help others; it is not an ornament; it is a vehicle that I must use to perform CPR, to take vital signs, to ensure everyone’s safety, to talk to people who have been where I am and will hopefully never be again.
I forced myself to eat things I felt safe with, things that my stomach could handle. I forced down Gatorade and hoped every night that I would make it out of this alive.
I threw my entire self into my job, knowing full well that if this door closed, that was it. I was working at a psychiatric hospital that I’d dreamed of being employed for since I’d first heard about them as a child, all those years ago when I began to wonder what my future could look like if it wasn’t solely consumed by anorexia. I knew that if this door closed, another wouldn’t open. If I let my eating disorder take this from me, it truly had won. I had not been able to be convinced by doctors, therapists, or treatment centers to “trust the process.” I couldn’t wrap my head around the idea of recovering just for the sake of recovering. Anorexia and ARFID were all I knew; I had few memories before my eating disorder began.
There was no “before the eating disorder.” Only an unknown, ambiguous “after, if at all,” which, as someone who thrives on concrete directions, structure, and routine, frightened me more than staying in my inhuman, self-created concrete world. I have never understood ambiguity, nor been receptive to following a path or structure that I didn’t understand or create. I understood, at this time, that I had to manufacture my own “after,” throw myself into it, and hope for the best. It seemed as though I had been in a mental fog, on autopilot, for the past fourteen years, and I was inching my way toward becoming a flesh-and-blood human being again.
Slowly, my job became more important than my weight. Slowly, I began to feel the same satisfaction while driving back from work as I did when I hit my step quota or successfully starved another day, but this satisfaction was coupled with an exhaustion that appeared sustainable, rather than draining.
"Anorexia and ARFID were all I knew; I had few memories before my eating disorder began."
I still struggle to fuel my body, and I still do not enjoy eating. The behaviors associated with the ARFID part of my eating disorder are still very entrenched. I have not shared this part of my life with my coworkers, because I tend to be more reserved when it comes to my personal life, and I don’t know how they’d react. Social cues and interactions are still hard, but I love my job, and interacting with patients each day reminds me why I pushed myself to get better just as hard as I pushed myself to disappear. I know that this is what I was meant to do, I knew that since I was a kid, and though my passion for psychology never wavered, it took battling through an eating disorder for me to develop the empathy and attitude necessary to understand people’s struggles. I learned all I could, and I gave all I could, and if continuing to give my entire self to my work means recovering, tolerating (not loving) my body, giving up my rigid exercise routine, and tolerating (not loving) food, then so be it. I want to continue to give all I can.
“Y3 dede (make some noise), y3 dede, y3 dede….It’s a miracle! It’s a miracle! It’s a miracle! Somebody scream!!!”
“Ushers, grab the mother away…Grab her...Good...Good. Everyone calm down...Now, the last question... how many fingers am I holding?”
When I woke up today, of all the things I had thought I’d be doing, faking healing was not on my to-do list. And yet here I was- in front of a crowd of five hundred or so people with a million-dollar question to answer - knowing fully well the only way this was going to end was with me lying with my eyes wide open. Now, I imagine that you’re confused, so let me give a bit of context for how I landed in this mess in the first place: my mother is a chronic church hopper, though not by choice.
This habit of hers began after I was diagnosed with Glaucoma in 2006; the doctor told me I had about 2 weeks left to see and my left pupil had moved from the center of my eye to the corner. I ended up going partially blind a few weeks later. And while that was an interesting time (mainly due to the fact that I became the human equivalent of a badger mole), I bring it up because of how it gave members of my family newly defined job titles. My grandmother, father, and aunties became self-appointed doctors, prescribing carrot concoctions that were good for the eyes one day and sketchy yeast powders that cured blindness the next. Sometimes, they’d blame my TV-watching for my loss of vision. I would have almost believed their daily diagnoses if they had actually gone to medical school at some point in their lives. They had barely completed high school.
While the rest of my family clung to fake science during this period, my mother dove right into religion for a cure, but in her own special way. Anyone who knows my mother knows one thing for sure: when I say special, I really mean exceptionally dramatic. My mother, Sade (pronounced Sha-adey), is a woman born for drama. Her whole existence - how she walked, talked, even breathed - screamed melodramatic telenovela energy. Sis could have been starring in Nollywood movies, but instead she made the world her stage and ran with it. If that wasn’t enough, I was always a forced front-row audience member in her real-world shenanigans. I’d never forget that day outside the doctor’s office when I was sitting on the side, casually minding my business while the doctor predicted that I was going to go blind. Sade’s first reaction to the news was to dramatically grasp her chest, gasp like she was the lead in an Oscar-nominated performance before proceeding to...roll on the floor… continuously and hysterically like the poor doctor owed her money. Seven-year-old me was just puzzled, lollipop in hand, while this middle-aged woman cosplayed as a human football. Internally, I was like “Huh? I am the one going blind. Madam, chill”. But that was Sade for you, and that day in the doctor’s office wasn’t the last of my mother’s theatrics. Now combining her flair for melodrama with religious fanaticism was like adding Mentos to a bottle of Coca Cola: a mess all round. The greatest manifestation of this was when we began church hopping for a miracle, or better yet when my mother went church hopping and I just happened to be forced into the mix.
“Sade kept our church visits on the down low since she believed the more people knew of our mission, the less likely a miracle was going to happen.”
The first time Sade pulled me along, I honestly thought we were going on vacation so I was in for a big shock when the destination of our two-hour taxi ride was an open pasture with almost no housing, in the middle of nowhere. If I didn’t know Sade was my biological mother, I almost thought I was being trafficked or she was pulling an Abraham. The biblical kind. After ten minutes of awkward silence where I ran through a thousand escape plans in my head, an unknown man popped out of some shrubs and took us to a rundown mud thatched house which honestly kept worsening my trafficking suspicions. We were led indoors and the man locked the door before searching for something in the corner of the room. It definitely did not look like a good sign but my mother seemed calm so I kept my anxiety to myself. In the midst of panicking about whether my subscription to life was going to expire some time soon, the man found what he was looking for and walked towards me with a bottle of strange yellow liquid. He opened the bottle… I stilled…he poured the liquid on his palm…reached for my forehead…and then began to pray while tossing my head around until it became clear I was here to see a pastor, though I got more of a headache than a healing, if I’m being honest.
That shady first visit opened up a new reality for me. One where my mother would take me to churches and I’d go no question asked. By the time I was ten, I’d been to more churches than the number of years I’d spent on Earth. I’d also built a routine for how our church-cations would go: my mother would first find a charismatic pastor on TV. She’d watch this pastor’s station for a few weeks to see if they were legit (her scam radar was broken for sure because she always ended up picking the sketchiest people). Then, she'd plan a secret out-of-town “trip” with me where I’d drop everything (including school) and follow her. Sade kept our church visits on the down low since she believed the more people knew of our mission, the less likely a miracle was going to happen. We’d show up to a dingy, remote settlement built by the pastor for people coming from all over the country for a miracle. Staying in these settlements often lasted a week. My lot during that time was to stay quiet, line up, get shoved around during prayer, and leave before the next person in line was towed to the pastor. If I got healed during the session - which had never happened - it was expected that I’d come with my mother a day or two later to give my testimony, but usually not within the same-day’s service. This was what I grew to expect of all my church visits until the day we went to a church that didn’t play fair.
“For a few seconds after that slam, I couldn’t tell if an eclipse of the sun happened or if I had temporarily lost the ability to hear or see. All I knew was that I was going to go totally blind first, before anything else, by the time this healing ended.”
Right off the bat, I should have known this church would be different by how disorganized the services were. Instead of a fixed structure of preaching, healing, and testimony past churches used, services in this place were more open-ended. The first two days of sermon consisted of very short Bible teachings that would end suddenly because the pastor received a “vision”. With extra pizzazz, he would reveal his received prophecy to the crowd for someone who fit the description to show up for prayers. His visions were often vague enough to always have someone fit the bill. Vision tellings were also accompanied by a hype man who screamed and made sound effects with the microphone to drum up the atmosphere. By the fourth day, it was clear to me that this “Man of God” probably decided service by throwing a random pair of dice when he woke up.
On the sixth day, however, the pastor decided to spice things up with an out-of-the-blue healing session for the sick. So, those with any form of disease were arranged to the front of the church auditorium for prayers to begin. My enthusiastic mother who had been waiting for this moment pushed me to the stage where I lined up with other sickly looking people. The pastor began to lay his hands on each person starting from one end of the line. In half an hour, it was soon my turn and I prepared myself for the usual shoving and a bit of screaming before I got to return to my seat. I knew the drill well enough. Or at least I thought I did. The pastor approached, his sweaty hand speeding for my eyes. And then, a moist whack strong enough to move mountains was all I felt.
For a few seconds after that slam, I couldn’t tell if an eclipse of the sun happened or if I had temporarily lost the ability to hear or see. All I knew was that I was going to go totally blind first, before anything else, by the time this healing ended. I wasn’t given enough time to prepare myself or recover my senses before another slap hit me. At this point, it was clear that whatever was happening was uncharted territory and I had to deal with it. I struggled to open my eyes so I could be prepared for any sudden attacks. An usher removed my glasses, leaving my face with ample surface area for future slaps to hit home more. When my hearing returned, the first thing my ears registered were screams of “Be healed in the name of Jesus! Out in the name of Jesus!”. After every scream came a slap. This time, I knew better than to stand still waiting for a beating.
The next few minutes were a repeated cycle of dodging, “Out in the name of JesusI”, and ushers rushing to hold me down so my healing went more smoothly. To the outside world, it probably looked like whatever demon was supposed to be causing my partial blindness was being exorcised while I was twisting and writhing away. So, the pastor applied more strength to the slaps. It was tiny me against two ushers and a screaming pastor and I had already decided after a few minutes that the battle was no longer mine to fight.
In the middle of my existential crisis, an usher shoved a microphone in my face. The pastor’s voice rang throughout the auditorium, “Can you see?” And on the inside, I fought the urge to scream “No I cannot! Thank you very much for asking, considering how you slapped my remaining eyesight away.” Instead, I opted for staying silent. The microphone went away and the slaps continued. Of course with more intense “Out in the name of Jesus!” Then the mic made a return. “Can you see?” Nobody had to tell me twice this time. I responded enthusiastically. “YES! YES!” The designated hype man started to scream in reply to my answer, “Y3 dede! Y3 dede! Y3 dede!” In between the applause from the church, cheering, and the drummer going ham on the drums in celebration, the pastor asked a follow-up question: what is the color of my shirt? This was a much quicker one to answer. My eyesight was bad but not terrible enough to not see color, even without my glasses. I squinted for a bit. “Red?” The cheers returned, letting me know I had answered correctly.
At this point, I was feeling fairly untouchable. It seemed like I had single handedly managed to lie my way out of a beating-healing and it felt like the world was truly an oyster, my oyster. Who were Megamind, the Joker, and Lex Luthor in front of my genius? My mother ran towards the stage, wrapping me in a suffocating hug, but I honestly didn't mind because my brain was floating on clouds of relief, excitement, and a whole lot of ego. If my life were a movie, I think this would have been the part where the theme music played while I heroically walked off into the sunset like the main character. Except I had forgotten with my life being a comedy, there was no way I should have expected any moment of coolness.
“I had always assumed I went blind for a reason beyond human control, so what was the point in trying to overthrow the Creator's grand design?”
The pastor humbled me pretty quickly with the next question: how many fingers am I holding? I heard this sentence and I knew the gig was up. Context alert: the best my vision goes is being able to recognize color. While with my glasses I can do things like count or read, I still rely on being super close to things to be able to see them a bit clearly. And now this “Man of God” standing a far, far distance from me was asking me to count his fingers…without my glasses? That would have been the true miracle. I desperately prayed for the ground to swallow me while I thought of what to say, but considering how firm the floor was, my wish wasn't going to happen anytime soon. I'd already gone too far enough to turn back, so I decided to give the next answer my best attempt: by lying obviously. The choice now was to pick a number between one and five that felt like it could be the right one. Which number sounded like it could be the number? Number one didn't feel cool enough. Two was close enough but was it the winning number? It didn't feel like it. Three? Three! The more I said three in my head, the more it just felt, like it made sense. Three, three, three. I went for three.
The church was silent for what felt like an eternity. Time ticked slowly in between me panicking as to whether I had messed up big time. Five hundred or so people not making a sound while I sweated like a pig going to the slaughter. And then, the loudest screams I've ever heard filled the church. My guess was right. I don't remember much after, probably because I blacked out after all the pressure I had been under. When I finally recovered, my mother and I were standing at the bus station some hours later, waiting for boarding time. In the period I had been mentally absent, she had managed to call all the millions of relatives we had to announce that I had regained my ability to see. A part of me wanted to tell her that I hadn't, but I also wasn't ready for that conversation (and the possible beating I'd get for lying) just yet. I figured she'd find out later anyways when she was calm enough to realize I was still blind as a bat.
Our bus started boarding soon after and set off, aggressively overtaking other vehicles on the highway. Even though I could barely see past my fingers (Sade refused to give me back my glasses), I looked out of the open window at the blur of vehicles we passed by. Each vehicle reminded me of myself: slow and moving at my pace on the road called life only to be hurried out of my lane by bigger, more aggressive road occupants - in this case, my mother. And how it was always Go, go, go! with no space for my input when it came to our dynamic. Go to this church, go see this pastor, go get your healing. Never Price, go at your own speed. Do you want to go to this church? Or the most important of all questions, Do you even want a healing? And to be fair, I didn't. I had always assumed I went blind for a reason beyond human control, so what was the point in trying to overthrow the Creator's grand design? My mother never agreed with my views on faith, and though I'd always muddled along to each service because I had no choice, faking a healing this time was the straw that broke the camel's back. And the straws had certainly piled up over the years. I never wanted to show up at any religious establishment Sade picked ever again. Right as I was in my feelings, Drake-style, my mother cut my musings short.
"What does the billboard outside say?"
"I don't know, the bus was too fast."
"Okay. What about the next one?"
"Maa, I'm tired. I want to sleep."
Granted, it had been a long and eventful day, but was I truly sleepy? No. Was I going to stay awake to quicken the process of my mother finding out I couldn't see? Also no. I leaned on the bus window and closed my eyes in preparation for my pretend nap. The bus kept swerving and swooshing, making it hard to keep up my fake sleeping, especially with each knock of my head on the window as the driver switched lanes. The same head recovering from a post-healing headache. "It would be nice if I never have to sit in one of these buses again", I thought. And if wishes were horses, I'd own a stable. Two months later, we were on a similar bus on our way to the next church.
This article - A story about glaucoma: feeling the anointing - was previously published on WellSpringsWord and is republished here with the author's kind permission.
"Remember that everyone experiences fibromyalgia pain differently, so it's important to personalize your description based on your own symptoms." | Photo Credit:©peopleimages.com / Adobe Stock
As someone living with fibromyalgia, I can tell you that describing the pain isn't as easy as saying, "it hurts." It's like trying to explain a color to someone who's never seen it or a sound to someone who's never heard it. The pain we feel isn't just physical - it's a complex symphony of sensations that can be overwhelming at times.
"When I explain fibromyalgia pain to my friends, I often find myself lost for words. How can I make them understand the constant, unending fatigue, the sharp, unexpected jolts of pain, or the dull, relentless ache that never seems to go away?"
I remember one time, I was at a family gathering. My cousin asked me why I seemed so out of it, why I wasn't my usual lively self. I struggled to find the right words. I said, "Imagine you've just run a marathon. Your body is completely spent, aching with fatigue. Now, imagine feeling like that all the time, even when you've done nothing more strenuous than making a cup of tea."
That's fibromyalgia pain. It's a marathon without a finish line, a battle without a victory. It is a challenge to describe because it is so much more than just pain. It is a persistent, all-encompassing experience that defines every moment of our lives.
But how can we express the full spectrum of fibromyalgia pain to those who don't live it? This article aims to provide you with the language, expressions, and metaphors that can help you articulate your personal experience of fibromyalgia pain. With this, you can help your partner, family members, friends, and co-workers not only understand your physical discomfort but also the emotional, mental, and social repercussions of living with fibromyalgia.
Consider this your guide to communicating the uncommunicable, to making the invisible visible, and to fostering understanding in your personal and professional relationships.
Before we discuss how to describe fibromyalgia pain, let's remind ourselves of some key facts about fibromyalgia pain:
Knowing how to describe fibromyalgia pain begins with understanding that fibromyalgia pain differs from other types of pain in several ways. Unlike acute pain, which is a normal sensation triggered by the nervous system to alert you to possible injury, fibromyalgia pain is chronic and often widespread. It is not caused by a specific injury or illness and can be difficult to pinpoint. Additionally, fibromyalgia pain is often described as a deep, dull ache that is accompanied by stiffness and tenderness in specific areas of the body known as tender points.
Another way that fibromyalgia pain differs from other types of pain is that it can be unpredictable and fluctuate in intensity. Some days, a person with fibromyalgia may experience mild pain that is manageable, while other days the pain may be so severe that it interferes with daily activities. This can make it challenging for individuals with fibromyalgia to plan and participate in activities, as they never know when their pain may flare up.
Fibromyalgia pain can also be accompanied by a range of other symptoms, such as fatigue, sleep disturbances, headaches, and cognitive difficulties. These symptoms can further complicate a person's ability to manage their pain and communicate it to others.
Finally, fibromyalgia pain is often misunderstood by others who do not have the condition.
Because it is an invisible illness, meaning that there are no outward signs of pain or disability, some people may doubt the severity of the pain or dismiss it altogether. This can be frustrating and isolating for individuals with fibromyalgia, who may feel like their pain is not being taken seriously.
Explaining the pain of fibromyalgia to a partner can be challenging since it is a pain that is often elusive and difficult to articulate. Imagine waking up feeling as if you've spent the entire night running a marathon, only to realize that your day has just begun. That's a glimpse into what fibromyalgia feels like.
To help your partner understand, you might want to use vivid, relatable analogies. Here are some examples:
I find it's also helpful to discuss the variability of fibromyalgia pain. Your partner must understand that your pain levels can fluctuate from day to day, and even hour to hour.
Pain is often at its worst upon waking and may ease slightly as the day progresses. However, any increase in activity or stress can also lead to a flare-up, making the pain more intense.
Lastly, using a pain scale can be beneficial. A pain scale is a tool that doctors use to help assess the severity of pain. By using a pain scale, you can communicate your pain in a quantifiable way that your partner can understand.
Pain Level | Description |
---|---|
1-3 | Pain is present but manageable and doesn't interrupt daily activities. |
4-6 | Pain is discomforting and can disrupt concentration, but still manageable. |
7-10 | Pain is severe, hinders daily activities and requires rest or medical attention. |
Remember, communication is key. The more you talk about your experience with fibromyalgia, the better your partner will be able to understand and support you.
Initiating a conversation about fibromyalgia pain with your children may feel like an uphill task. However, it is a crucial one which can help to create an understanding and supportive environment for you. Communicating about your pain not only fosters empathy but also aids in maintaining a harmonious relationship within the family. It also encourgaes your children to be open about pain that the may experience in their lives. The method of explanation, however, may vary depending on the age of your children.
When it comes to young children, simplicity is key. Their developing minds may struggle to comprehend complex medical terminologies or concepts. So, it's best to use comparisons or analogies they can easily relate to.
With teenagers, you can delve more into the particulars of fibromyalgia. They are capable of understanding more abstract concepts and are likely to appreciate your honesty and openness.
Remember, the goal is not to burden your children with your pain, but to help them understand why you may have good days and bad days. The more they understand, the more supportive they can be.
Age Group | Method of Explanation |
---|---|
Young Children | Use simple analogies and visual aids. |
Teenagers | Provide detailed explanations and encourage self-research. |
Explaining fibromyalgia pain to family members can feel like an arduous task, but it's crucial for fostering understanding and empathy. The approach you take might differ depending on the family member you're speaking to. For instance, the way you'd explain your pain to your parents might not be the same way you'd explain it to your siblings. It's all about finding a balance that suits both your comfort level and their understanding.
When it comes to your parents, let's consider a more formal and comprehensive approach. You might want to:
Imagine explaining to your parents, "Fibromyalgia is a chronic condition that causes widespread pain, fatigue, and cognitive difficulties. It's like waking up every morning with the flu, combined with the ache of an intense workout from the day before. Despite this, I'm working closely with my doctor to manage my symptoms."
On the other hand, when explaining your fibromyalgia pain to your siblings, you might want to adopt a more conversational and relatable tone. Here's how you can go about it:
You could say to your siblings, “You know the feeling when you're really tired, but you can't sleep? Or the soreness after a long workout? That's what fibromyalgia feels like, but it doesn't go away. But don't worry, I've found ways to cope, and I'm always open to talking about it if you have questions.”
If you're like me, you've probably found yourself in the awkward position of trying to explain your fibromyalgia pain to your colleagues. It's not always easy to convey the intensity and the pervasive nature of the pain to people who've never experienced it.
Imagine the worst flu you've ever had. The aching, the fatigue, the feeling that your entire body is under siege. Now imagine feeling that way every single day, with no end in sight. That's what living with fibromyalgia can be like.
It's not 'just a little pain'. It's a chronic condition that can be debilitating, and it's often accompanied by other issues such as sleep disorders, cognitive difficulties, and emotional distress. Being open about this with your colleagues can help them understand and empathize with your situation.
Here are a few ways you can describe your fibromyalgia pain to your colleagues:
Fatigue: This is not just ordinary tiredness. It's a deep, pervasive fatigue that can make even simple tasks seem overwhelming.
Remember, everyone's experience with fibromyalgia is different. The key is to be honest and straightforward about your symptoms and how they affect your day-to-day life. Here's a simple table to help you articulate your pain:
Pain Type | Description |
---|---|
Constant dull ache | A persistent, all-over body ache that's always present. |
Flare-ups | Periods of intense pain that can be incapacitating. |
Morning stiffness | A feeling of heaviness and stiffness upon waking, making it hard to get out of bed. |
Fatigue | A deep, pervasive fatigue that can make even simple tasks seem overwhelming. |
It's important to remember that while fibromyalgia is not visible, it is very real. Your pain is valid, and it's okay to ask for the understanding and support you need.
As a fibromyalgia patient, when trying to describe fibromyalgia pain you may frequently encounter comparisons between your pain and that of arthritis. While on the surface, both conditions share similarities, such as chronic pain and fatigue, in truth, they are fundamentally different.
Fibromyalgia, as we know, is characterized by widespread muscle pain and tenderness, often associated with other symptoms such as fatigue, sleep disturbances, and memory issues. Unlike arthritis, it is not an inflammatory condition and does not cause damage to the joints, muscles, or other tissues.
Note: Fibromyalgia doesn’t cause joint deformations or damage. However, the constant discomfort and fatigue can significantly affect your quality of life.
On the other hand, arthritis is a broad term that covers over 100 different disorders affecting the joints. Most forms of arthritis are inflammatory and result in swollen, tender joints that can eventually sustain damage. Additionally, certain types of arthritis can affect other organs in the body.
Describing the pain of fibromyalgia can be as complex as the condition itself. Indeed, those living with fibromyalgia often describe their pain in a variety of terms, ranging from a dull ache to a sharp, stabbing sensation. Moreover, some individuals have likened their fibromyalgia pain to a burning sensation. While these descriptors might differ between individuals, they all underscore the pervasive and often disruptive nature of fibromyalgia pain.
"I frequently tell people it's like a thousand tiny needles pricking my skin, or like a slow, constant burn. On the worst days, it's like someone is repeatedly stabbing me. It's a pain that's both relentless and unpredictable."
The following table provides a range of descriptors often used by individuals with fibromyalgia to describe their pain. Though it's important to remember that this is not an exhaustive list, as the experience of pain can be very personal and subjective.
Sensation | Description |
---|---|
Burning | A feeling of heat or a sensation similar to a sunburn. |
Stabbing | A sharp, intense pain that can feel like a knife or a needle. |
Aching | A constant, dull pain that may be widespread. |
Throbbing | A regular pulsating pain that can range in severity. |
As you can see, the descriptors vary widely, reflecting the complex pain experience associated with fibromyalgia. So, if you're trying to explain your fibromyalgia pain to someone else, don't be discouraged if you struggle to find the right words. Remember, your experience is unique and valid, and it's okay if it doesn't fit neatly into a single descriptor or category.
In conclusion, fibromyalgia pain is a deeply personal and unique experience. The wide range of descriptors we've discussed just goes to show how complex and varied the pain can be. Remember, it's perfectly okay to struggle to find the right words to describe your pain. Your experience is valid and significant, and you don't need to fit it neatly into a single descriptor or category. Never be discouraged in your quest to help others understand your pain. It might be challenging, but with patience and perseverance, those around you can begin to grasp what you're going through.