About Disabilities · About My Life

Chronic Illness Crisis: My Story Continued

This post tells the story of how I came to be diagnosed with three additional, significant chronic illnesses in the crisis that turned my life upside down. It thus acts as a part two of “Fibromyalgia: My Story,” which can be read here. Since it addresses some mental health topics, it also can be seen as adding to “Obsessive-Compulsive: My Story,” which is linked here. Note that this post contains discussion of ableism, suicidal and self-injurious thoughts, and traumatic chronic illness experiences.

The story of how I developed three more chronic illnesses on top of my fibromyalgia, pushing me into a life-changing crisis, is a complicated one. This is partly because the trauma has caused persistent problems with my long-term memory.

In the past few months, I’ve been typing up the stretch of diaries that covered most of my college and post-college years. It’s been quite the experience! Multiple bits of memory I hadn’t previously had access to have floated back up, bits of memory I had no context for are being put into place in a larger narrative, and some other events have proved to be gone entirely. I’ve written this post as I’ve read, laying out the story of how I descended into my chronic illness crisis.

Another reason this story is so complex is that I can’t tell you for certain, even now, when these illnesses began. My fibromyalgia, despite various pre-symptoms in my earlier years, had a definite starting point with the 2009 H1N1 pandemic. These conditions? They may have been here all along, hidden under the fibromyalgia and only noticeable once they became severe.

But let’s begin where the fibromyalgia story left off: at the beginning of my time at college. At this point, I had my symptoms well enough under control that I lived a full life. I played cello, I sang, I went to church, I spent time with friends, I wrote my own novels, and I attended school full-time with two majors. Yes, I had definite limitations in terms of physical ability and sleep requirements, and I didn’t feel great living in my body. But I was doing pretty well.

Me kneeling next to a bed in a college dorm, in the middle of unpacking
Moving into my first college dorm, Fall 2012

Starting college was difficult, of course. It’s a major transition for everyone, and I was still struggling with an undiagnosed and untreated mental illness. On top of that, Adams State University proved to be the wrong college for me. I made the best of it. I had some good moments! But on top of my increasing problems with mental health, I was also dealing with the larger world and its constant failure to accommodate people with disabilities.

I wasn’t unfamiliar with ableism, though I didn’t yet know the word for it. At college, though, the problem became more obvious. I struggled to get a healthy diet at the school dining hall with my food restrictions. My roommates often failed to take my need for sleep seriously. In fact, many of them took offense. They decided I was lazy and a burden. The disability offices weren’t very helpful, and teachers sometimes questioned, ignored, or even fought my official accommodations. School apartments required extremely thorough cleaning on a regular basis. Taking fewer college classes per semester also wasn’t an option because of scholarship requirements and high college costs.

The stage was thus set for me to become incredibly sick. I was already a perfectionist who put an enormous emotional burden on my own shoulders. I pushed myself hard, and now I was surrounded by people who weren’t willing to give me what I needed to protect my fragile body. They insisted that I work as hard as I possibly could–more than I could. Even doing that, I wasn’t enough. To them, I was a problem; I was boring; I wasn’t contributing; I should just try harder. I heard it from so many people: family, roommates, church members, teachers, even my friends’ parents.

And I listened to them. Even as I spiraled down into mental breakdown throughout my freshman year, I tried so hard. It breaks my heart reading my diaries from this time period because of the extent of my suffering. I was putting forth so much effort that I could not afford to give. I simply didn’t value myself. My somewhat dysfunctional family added a lot of strain as well, with their own high expectations and emotional burdens.

Close up of me holding a hippo stuffed animal toy in front of my face
Me having a sick day, Early 2013

Amidst all this, though my fibromyalgia seemed stable enough, I experienced two strange bladder episodes where for hours at a time, I couldn’t get rid of the somewhat painful feeling that I needed to pee. The first happened in February 2013. The second happened in December 2013. I wrote them off as “weird cramps” and never even connected the two episodes. After all, I had a lot going on. I also experienced at least one episode of low blood pressure that was caught when I tried to donate blood. I was used to having slightly low blood pressure and slightly low temperatures, but the 80/60 number scared me a bit.

In January 2014, I transferred to BYU – Idaho, and immediately, my fibromyalgia blew up. I was used to experiencing serious flares the first and the last weeks of school semesters, thanks to the increased stress and heavy workloads, but this was worse than usual. One contributing factor was that I could not for the life of me find many of the elevators Maps didn’t show them, few people knew their locations, and they were often hidden in the strangest places. It certainly took more than that first week to figure them out, which meant I had to use the stairs. Within the week, I ended up in such severe pain in my hips and legs that I had to go to a local urgent care and get a butt injection of an anti-inflammatory.

My mental health was also acting up from the stress, so I set up a counseling appointment and was diagnosed with obsessive-compulsive disorder. This brought an entirely new perspective to my life. For the next year or so, I focused on overcoming the mental illness that had been tormenting me ceaselessly. I switched from my original low-dose antidepressant to a higher dose of Zoloft, with no apparent side effects. I was determined to excel at school, now with just one major, and to keep writing my books. The reality of my fibromyalgia, which continued to flare throughout that difficult winter semester, took a back seat. My physical health? Definitely not the priority.

I experienced one particularly notable episode of ableism from a teacher that semester, which I’ll talk about more in a later post. Then, while doing a semester online, I fell ill with a high fever, extreme abdominal pain, nausea, and other symptoms. Various doctors prescribed different antibiotics, though they weren’t sure what was happening. My family was annoyed at me for being a problem. But I was really suffering. It was… not good. There truly was this heavy expectation in the family that I be functional and helpful and that I emotionally take care of the others, particularly my autistic brother, who at this time was often violent. Me failing to uphold that was never taken well. Even me going to college was often treated as a betrayal, despite it also being seen as the only acceptable path.

I ended up having an allergic reaction to one of the antibiotics I was put on. Once I got off of it, my symptoms improved. A specialist concluded that I had experienced a gallbladder infection.

Me, with face out of frame, holding a small black and white kitten to my chest
Me and my emotional support cat Spartacus, Summer 2014

Meanwhile, in counseling, the priority became for me to learn how to set appropriate boundaries, communicate effectively, and generally disentangle myself from negative patterns my family had developed. That process, however, would take a very long time, and all the stress I experienced in the meantime definitely contributed to my worsening physical health. I had one less severe episode that was either my bladder or my gallbladder in September 2014. Then, I continued on into my junior year at BYU – I.

At that point, my physical condition took a downturn. I didn’t notice it at the time because it was so gradual and because I was so used to feeling sick and ignoring it, but in reading my diaries now, the pattern is clear. I experienced many serious flares. As winter returned, I began taking naps more and more often. Soon, it was a daily occurrence. In my diaries, I started skipping words, confusing dates, referencing events I hadn’t written about, and showing other such indications of mental confusion. This presented itself in my daily life as well, with me writing essays on the wrong books, blanking out for short stretches of time, and placing items in illogical places. I had horrific, graphic nightmares; night sweats; and nighttime teeth clenching that flattened my molars.

But I continued pushing myself just as hard as before. I wrote #OCDStory during this time, and was surprised at how difficult I found it. It has been my most challenging novel so far on many levels and for many reasons, but one was that, during my junior year, I was having trouble focusing or maintaining motivation. Though I did take notice of that, I didn’t understand what it meant. I thought I was just being lazy. My head did seem clearest in the evening/early night, so I took to writing my book and my school essays then.

I had another gallbladder-or-bladder episode in March 2015, an infected cat bite that put me in the hospital in May 2015, and a tenacious intestinal blockage in July 2015. I was alarmingly blasé about all of it. I returned home for the summer and then was back to school for my senior year.

I am incredibly grateful that the first semester of my senior year is also when I had my best set of roommates. Though some of them were unnecessarily loud at night (which I literally paid for in pain), they did like me. More importantly, the girl who actually shared my room was the best friend I ever had at BYU – I. She took such good care of me. She would nap at the same times as me, bring me food, do chores when I couldn’t, remind the others to keep quiet, sit with me while I cried, and even help me get undressed on the days I hurt so much I couldn’t do it myself.

I needed that help, badly, because that first week I became so sick I couldn’t walk for two days. The struggle would only worsen from there. This semester was the first where I felt ready to play cello again after my mental breakdown freshman year. It was also the only semester at BYU – I where I had a part-time job. My body made it known that I had taken things too far.

Me amid others playing cello on a stage
My last orchestra concert, Fall 2015

I repeatedly had horrific flares with severe pain and chills; I needed multiple naps a day; and I started forgetting or simply being unable to do basic tasks like showering, cleaning the kitty litter, shopping, and cooking. The deeper we got into the semester, the worse it became. I was constantly late to classes and church. I couldn’t remember my medications. My mental health was worsening again. I also ended up gaining 40 pounds because the only thing that kept me awake was food. The fatigue got to the point where all I could think about, every second I was awake, was when I could go back to sleep again. I was nothing short of miserable.

Thinking that my fibromyalgia must be worsening again, I started making adjustments. I bought looser clothing that hurt less. I rearranged my work schedule. I made more use of the accommodations I’d been allowed (my orchestra teacher was particularly kind in giving me a lot of leeway–most days, I couldn’t even play anymore because of the pain). I attended a later church across the street. But none of it proved effective, and winter was coming.

Finally, I realized I had no choice: I needed to quit orchestra entirely and stop trying to work on #OCDStory temporarily. These were huge sacrifices for me, since writing and cello have been my two major passions in life. The fact that I unknowingly came to this conclusion on the last drop day of the semester seemed like a sign. But I still sobbed and sobbed when I dropped orchestra. After all I’d been through to become emotionally well enough to play, my body had snuck up from behind and taken cello away anyway.

I haven’t been well enough to play cello since that day.

Making that change did improve many of my symptoms, thankfully. But now I had the brain capacity to realize that I was experiencing worsening bladder pain and frequency and probably had a UTI. When I went to the doctor, she said there were no definite signs of an infection, but there were minor discrepancies that could indicate I was healing from one. I took an antibiotic, which didn’t much help. I returned to the doctor and was told I was dehydrated. I forced myself to drink significantly more, and that helped. However, at this point, I started having to use a heating pad to reduce the pain enough that I could sleep, a practice that continues to this day.

In between semesters, I continued to confuse my symptoms for other issues. By March 2016, I had at least admitted that “the fibro may be getting worse than I can manage.” But the pressure from others didn’t let up.

A picture of me sitting in my room with my head tilted
My 22nd Birthday, Spring 2016

My last semester as an undergraduate student continued in a steady downward spiral. I told myself that I would push through to the end of my degree before figuring out how to stabilize my health. Within that first week flare, I had some strange symptoms, including proprioception issues that caused me to veer left and walk into walls. But that passed. My other symptoms remained, including a feeling like all the energy had been sucked straight out of every muscle cell. Moving was hard and slow, and people often got mad at me for walking so sluggishly, though I tried to keep out of their way. I also struggled more and more mentally. Doing schoolwork was like trying to swim through Jello to reach my own thoughts.

On top of that, I was facing an empty black hole of a future that I didn’t know how to define. (Apparently, that’s normal for people nearing their college graduations.) I told one of the doctors at school, and he upped my Zoloft, which helped for a little while. For the sake of my happiness, I also started writing my first fanfiction, about Wanda Maximoff and Vision from the MCU developing a romance in between movies. And I’m so glad I made that choice, because it likely helped save my life.

I crawled across the finish line of my Bachelor’s in English in July 2016. I had accomplished almost nothing I had hoped for during my degree, and I was very sick, but I had made it through. So I headed back home. There, I started working online, one class at a time, towards a Master’s in Library and Information Science. I also restarted counseling to better cope with the “empty future” struggle.

But in September, I realized that my motivation was no longer strong enough to overcome my body’s resistance to action. It made me furious. I hated my body for its limits. I began thinking about violent self-injury. I wanted to show my body what pain was really supposed to look like, what it was to really be hurt. Just as my nine-year-old self had experienced a major loss of innocence in learning that the mind can create hell from within, my twenty-one-year-old self was experiencing that now with her body. I could feel the cage of it closing in on me, smothering all the glory of my mind and soul. For an idealist like me, that kind of restriction is very hard to accept. But trying to fight a war against basic physical reality, as I had been for too many years, only leads to brutal, mutual destruction.

I started seeing doctors in hopes of finding better treatment, but it never occurred to me that my symptoms were anything more than fibromyalgia–until late October, when my pelvic pain went from severe to get to an emergency room right now. Over the span of two weeks, I saw multiple doctors, who were confused by my vague descriptions of my symptoms. But I was quickly diagnosed with severe interstitial cystitis (IC). When I went to pee a couple of days after my first hydrodistension, I was stunned at the difference. I actually had to look to see if I really was peeing. Up until that moment, I hadn’t even realized I had been hurting when I peed.

That’s the unfortunate reality of having a condition like fibromyalgia–you become so used to pain filling up your head with noise that you stop noticing it, even when you really need to.

A picture of me sitting in my room in a ScarletVision shirt looking miserable
One of many bad days, Fall 2016

I’ve had similar experiences since then, including a bad strep infection that was discovered by my dentist after I failed to recognize it myself. For that reason, if none other, people shouldn’t urge chronic illness sufferers to “push through it.” You can’t know what it’s like living in someone else’s body. You can’t know how sick they really are. We chronically ill people often don’t even know how sick we are!

A whole variety of adjustments and treatments helped with the IC. Among other things, I had to begin an extremely restricted diet, which has been a consistent frustration since then. But my body still did continue worsening on me. In December, I started having truncal spasms and muscle shakiness that no one could explain, and my balance became unsteady. Every time I was upright, I experienced greyouts and a crushing, caving feeling in my chest. I began using a cane, which made me even more aware of how much stigma surrounds mobility aids. (Remember canes and walkers and wheelchairs are good because they provide freedom!)

The IC also continued causing excruciating pain as my bladder struggled to recover from the years of trauma and inflammation I’d put it through. I wouldn’t realize until I’d gotten much better exactly how nightmarish that pain was. But I knew even then that it was something no one should ever have to go through.

Soon, when I wasn’t in various doctor’s offices, having my other symptoms shrugged at, I was in bed. At the end of the semester, I went on medical leave. My life became little but Netflix show after Netflix show, constant suffering and exhaustion, with the main bright spots being the two chapters of my fanfiction I wrote each week. I had never written a novel-length piece so slowly before, but it meant everything to me.

Still, it couldn’t make up for the stagnation of my life, and as time passed with no answers, I became suicidal for the second time in my life. This was shameful to me; since I’d already been suicidal and come through it once, I’d thought I’d never feel drawn to that “solution” again. But suicidal thoughts are what happen when pain begins to exceed resources for coping, and there are many things that can cause that level of pain.

In this case, I was suffering from both physical and emotional pain. If I hadn’t had my mom and my expert urologist on hand to treat my IC during the many times it became unbearable, I’m certain I would have made an attempt on my own life. Emotionally speaking, I was also losing hope. My life lacked meaning; without visible accomplishments, it felt like I had stopped developing as a person. I wasn’t sure I could ever do so again while trapped in my failing body. Additionally, I was dealing with some serious internalized ableism that caused me to see myself as nothing but an immense burden on my family. I was ashamed to be so needy. I was ashamed to be doing so little. My existence basically seemed like a cost-benefit analysis weighed too heavily on the cost side.

Thus, the winter of 2016 and 2017 was one of the darkest times in my life. But in reading these diaries now, I can see that there were also so many small good things that got me through it. There was support and companionship from my friends and family. There were tender mercies from God. There were snuggles with my cat Spartacus. There were stories that I loved with fierce joy, including my own fanfiction. There was medical treatment to give me some hope.

In early 2017, a psychiatrist switched me from Zoloft to Cymbalta, which is an antidepressant designed for fibromyalgics. My mental confusion improved dramatically. My mom said it was like I suddenly became present in my life again. Some of my mental confusion had apparently been a side effect of the Zoloft, though it came on so gradually, the connection couldn’t be made independently. The vivid nightmares, night sweats, night jaw-clenching, and gallbladder issues also seem to have been related.

A picture of me sitting with a small smile in loose grey clothing
Moving towards recovery, Spring 2017

Since none of the doctors I’d seen had answers about the other symptoms, we made a late July appointment at Mayo Clinic up in Minnesota. My interstitial cystitis was starting, very slowly, to improve, thanks in part to regular instillations of a Heparin cocktail. Between February and July 2017, I experimented with diet eliminations and discovered various food intolerances, which resolved my pre-existing digestive issues into a more minor case of chronic constipation. Eventually, my suicidal thoughts stopped. Shortly before I went to Mayo Clinic, I finished my fanfiction. It continues to be a project of which I’m quite proud–even more amazing when you consider that my brain was missing in action for most of it!

At Mayo Clinic, I went through a whirlwind of tests and appointments. My initial diagnosis of fibromyalgia was confirmed, and I was further diagnosed as having postural orthostatic tachycardia syndrome (POTS), with possible complications from chronic fatigue syndrome (CFS), which is the “sister condition” of fibromyalgia. These diagnoses meant I had been placed firmly in the middle of a confusing blob of comorbid illnesses that modern medical science doesn’t yet understand. So far, what we do know is that there are clear signs of damage to the immune and nervous systems with mitochondrial involvement. There are also strong associations with various forms of physical and mental trauma.

I was told, for the POTS, to wear compression stockings, drink more water, and eat lots of salt. ✨🧂 At the fibromyalgia/CFS clinic, I was told to find my limits–how much I could do without setting off flares–and then stay right at the edge of those limits. Over time, with the help of other treatments, the limits tend to expand, and patients with these conditions can do a little more. This core lesson, for me, was underscored by the fact that, while in Minnesota away from the daily exercise routine I had stubbornly clung to all this time, my tremor, spasms, and balance issues disappeared.

Wow, I realized, I guess I’ve been pushing myself too hard?

Back at home, I set to work making the recommended changes. With the compression stockings in particular, I saw an immediate improvement in my fatigue. As the months passed, I was able to restart both my Master’s program and my #OCDStory edits. Unfortunately, my novel did continue to confound me.

In July 2018, with the addition of gabapentin as an IC pain treatment, I hit a plateau. I had made all the large improvements that could occur without an unexpected change in my body or a new advance in science. This was my new norm as a person with multiple chronic illnesses–very far from where I was when I wrote my original fibromyalgia story, but also a long way from where I was before Mayo Clinic.

I was able to leave the house for up to six hours a week, including for church. I could even handle a day trip every couple of months. I didn’t need naps most days, which meant I wasn’t sleeping 14+ hours anymore. I could do intellectual work for most of the day, albeit at a slower pace than before and with particular difficulty in the mornings. I could also more or less keep up with a few basic chores. And I wasn’t in agony anymore.

Me sitting outside with a red, white, and blue flower painted on my cheek
Me on the 4th of July, Summer 2018

Though I could now see potential for a happy and fulfilling life, I wasn’t happy. The realization that I’d hit my new norm set off another grieving period where my mental health took a major hit. As I would discover, I also had traumatic symptoms left over from the initial excruciating IC pain, including occasional episodes of derealization and depersonalization, a lingering terror of ever returning to that level of pain, and the aforementioned long-term memory problems.

So I got to work beating my unhealthy depression habits back with a broom. My counselor continued to guide me through the irrational and self-critical thinking patterns that had built up. I discovered that editing #OCDStory a little bit daily, instead of trying to speedrun it the way I once did, improved my mood. This also led into an important realization about my writing career, which I will talk about in more detail in a future post.

Then I made the decision, in late 2018, to quit my MLIS degree. I knew I was unlikely to ever be able to be a librarian, and it didn’t feel like the right path for me anymore. Instead, I found a way to do a little part-time work as a freelance editor online. Self-employment, as it turns out, is often the only working life that disabled people can manage.

Thanks to all of that, my mental health stabilized, and I’ve been living in much the same way since. With continued improvement in my IC inflammation and the use of various supplements, I’ve seen some of the more minor progress the fibromyalgia/CFS clinic promised me. It’s not much, but it’s noticeable. I’m able to do a little more every few months than I could do before.

I may never be as well as I was before college. To quote Mockingjay, “It takes ten times as long to put yourself back together than it does to fall apart.” But I’ve gotten somewhere. And all of this has taught me a lot. (As it turns out, you still grow as a person plenty even when you’re not accomplishing things in a normative way.)

Some of the most important lessons I’ve learned are in how we need to treat each other, as individuals and as a society. I’ve been able to improve as much as I have because I do have a lot of privilege. I am a white person from an upper-middle class family that, for all its dysfunction, has been able and willing to provide me the time, the space, and the resources I need to heal. So many people out there don’t have that, and it breaks my heart to think about.

Me standing in a living room
My 27th birthday, Spring 2021

For the rest of my life, I don’t think I’ll ever stop fighting for everyone to be given whatever they need to heal–which means we all have to be a lot nicer to each other. We need to stop calling people “lazy” when, most the time, there are very real barriers keeping them from acting. We need to see the incredible innate worth in each other, without accomplishment or financial earnings. We need to stop pushing people who have nothing to give and start pushing everyone else to give in what areas they truly can. We need to recognize our significant interdependence as human beings. We also need to pay close attention to our own health and stop trying to break through very real physical limits. We need to make the best of our reality, together.

Update September 2021: Thanks to my attempts to resolve a binge-eating disorder that started in 2019 as I tried making myself a new adult life, I’ve realized that I likely am on the autism spectrum. Echoes of this reality can be seen throughout my mental and chronic illness stories. This self-diagnosis brings my chronic illness crisis full-circle. I believe autistic burnout contributed to the crisis and that understanding my autism will allow me to finally transition away and finish recovering.

Thanks for reading! However this life story continues, I’m going to continue telling fictional stories about people with disabilities because it’s much needed (and relevant to my interests and experience). I am so grateful for all I’ve been given that has gotten me this far, and I’m grateful for people who care enough to listen and act. 💜

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About Disabilities · About My Life

Fibromyalgia: My Story

Hello, friend! Today, I’m reposting the story of how I developed and was diagnosed with fibromyalgia as a teenager. This was originally written in September 2012, and I’ve made some edits to improve the writing.

Even before I developed fibromyalgia, there were warning signs.

I have always been ill at ease in my body. I crawled using my knees alone, no hands, as soon as I was able to, and I preferred this method of travel long after I started walking. My mom calls it “the Kira shuffle.” When I did walk, I put all my weight on the balls of my feet. My mother had me start ballet when I was three because of my toe-walking, but I struggled there as in basically every physical area.

Me in a black feathered ballet costume as a kid
Me in ballet costume, Fall 2001

Starting in elementary school, I ​underwent occupational therapy because of my bad fine motor skills. Many teachers had me type (even during spelling tests!) so they wouldn’t have to deal with my handwriting. Having my hair brushed also caused significant pain. I wasn’t old enough to take care of my own hair for a while, of course, so Mom had to struggle through me fighting and kicking and screaming at the top of my lungs. On top of all that, I was picky about clothes, foods, and loud noises and cried at the slightest provocations.

After a bad episode of melissophobia in fourth grade, I started having a tension headache that has yet to stop. I came home from school every day and ate half a gallon of ice cream because it helped a little. I also began struggling with running, which caused severe pain in my chest, throat, and side along with shortness of breath and subsequent migraines. Despite a lack of diagnostic evidence, my doctor decided I had exercise-induced asthma and wrote a note excusing me from such activities. I was very affronted by my inability to help my class in the school running competitions.

In fifth grade, my mom theorized that my youngest brother and I both had sensory integration disorder (SID), which is now considered a part of the autism spectrum. It would explain my emotional instability, my physical ineptitude, and my general oversensitivity. I accepted the unofficial diagnosis easily. For a while, I carried around a bag of calming sensory items, including a fragment of my baby blanket and sprigs of lavender. And given the nature of fibromyalgia, it’s easy to imagine how SID might overlap with or lead to it in some way.

Me as a preteen
The glory of being a preteen, Fall 2005

Eventually, though, I decided I didn’t want to be the weird kid, the clumsy kid, the awkward kid anymore. I didn’t want to be the kid who had meltdowns over bees. So I conformed. I set out on a mission to be more like “normal” kids. I threw out the sensory items, I taught myself to walk flatfooted, and I started wearing stretchy jeans instead of leggings. I fought to hide my emotions more. I also underwent a massive cultural expansion, introducing me to many of the things I love now. I was never entirely “normal,” but I did my best.

Meanwhile, in seventh grade PE, I faced a new problem when those of us with asthma were required to use an inhaler to fully participate. The inhaler had no impact on my symptoms, so I spent the first few months of middle school suffering through PE and my post-exertional migraines in math class afterwards. Finally, my doctor gave me another medical excuse from running. Then, halfway through eighth grade, soon after my brother was officially diagnosed with autism, I was given a new diagnosis too: vocal cord dysfunction (VCD), a little-known breathing disorder where the vocal chords constrict due to stress or exercise. Since my throat hurt when running, I figured it fit. In ninth grade PE, however, I discovered that I could use a stationary bike without setting off those symptoms, which didn’t really make sense. I suspect now that I didn’t have VCD at all; it must have been something related to my fibromyalgia.

Also in ninth grade, I started having extreme abdominal cramps during my periods that left me on the floor screaming and throwing up. It’s the worst pain I’ve ever felt, the worst I can imagine, past the reach of rational thought. I’d struggled with my periods before that, with leakage and moodiness and irregularity, but all that was nothing compared to the growing pain.

Though fibromyalgia is complex, multifactorial, and not well understood, there seems to be a genetic element. All the above “pre-symptoms” likely hinted at this. But the full-on disorder doesn’t tend to develop until after a prolonged period of stress followed by an acute trauma, like a car accident or childbirth. Or, perhaps, a serious illness.

During my tenth-grade year, the 2009 H1N1 swine flu pandemic occurred. People had two reactions: either it was the end of the world, or it was a ridiculous thing to worry about. I leaned more to the latter side. In September, I became sick with coughing and breathing issues, but only a low fever. I was told I had H1N1.

Me as a tenth grader in the school hallway
Me at Homecoming 2009, unaware of impending disaster

I doubt that, given what happened two months later.

I woke up on Halloween morning sick–my hips and head hurt badly, and I was coughing. I decided that a “normal” teenager would go to their friend’s party despite being sick because “normal” teenagers are irresponsible. I had no idea what the consequences of that choice would be. When my friends and I went to check out the decorations down the street, I had a horrific coughing fit. I almost choked, and my friends had to rush me back inside. I went home with a 101-degree fever. The next day, I stayed home from church, incredibly sick and sleepy. When Mom came back and woke me up, I had a 103-degree fever.

I spent the next two weeks in and out of school as fever and cough and dizziness and pain came and went. After one relapse, I went to Urgent Care, where I was diagnosed with a Type A influenza and bronchitis. After another relapse, I went to the Emergency Room, where I was told that my flu had worsened. A couple days later, we went to my regular doctor, who told me that, in fact, I now had strep throat–an illness I’m particularly susceptible to and had multiple times in a row when I was little.

Eventually, I recovered, except for one thing: my hips wouldn’t stop hurting. I’d wake up in the middle of the night, in too much pain to even scream, feeling as if a burning sword had been thrust into the side of my hip. I’d flip over and then lie there, shaking. It kept getting worse, even moving into my left knee in February. I was losing sleep and becoming more and more stressed. Finally, in March, after an orchestra performance that ended with me in tears, I told Mom I needed to see the doctor. Just after my sixteenth birthday–which I’d been dreaming about my whole life–I was diagnosed with a temporary form of arthritis set off by a pathogen. It was supposed to go away by the summer.

The pain lasted through the summer, but I stayed hopeful. Then, during the first week of eleventh grade, as the stress from a chaotic new school year hit me, my symptoms exploded. The pain I had been suffering in my hips and knee expanded across my torso and down my legs. The first night, I couldn’t sleep from the pain. I could only cry. As the week continued, the pain spread up my face, through my fingers, into my chest. I hurt all over, all the time. Not only that, but I felt unfocused and distant, like there was a box of glass separating me from everyone else. Sometimes, the energy evaporated from my muscles, leaving them heavy and useless. As a natural result, I became very emotional. No one understood how much of a burden I was carrying. Some people thought I was freaking out for no reason. But it was all I could do to make it through each day.

This wasn’t reactive arthritis. This was something more serious. Rheumatoid arthritis, lupus, ankylosing spondylitis, Lyme disease, leukemia–the possibilities horrified me. I might have to stop doing the things I loved: orchestra, church activities, even school. My doctor started what would end up being a half a year of testing. I hit disappointment after disappointment as each result came back normal, offering me no answers. (The average fibromyalgia sufferer spends something like seven years trying to find a diagnosis, so I was actually quite lucky.)

Meanwhile, as the weather grew colder, I found myself struggling even more. The low temperatures bit through me, yanking my muscles taut and scraping against my bones, and all my symptoms continued to worsen. I learned to hate the snow. I had to go to bed at nine every night to be able to function the next day. I never had a moment without pain–and the kinds of pain! You don’t understand how many kinds of pain there are until you’ve had a condition like this. Between that and the fatigue, my memory and focus were failing.

The smile of suffering, Fall 2010

I needed extra help in math class. I kept forgetting to do basic tasks. I began doing things like putting the ibuprofen in the refrigerator and the milk carton in the sink. When I got my influenza vaccine for the year, my symptoms went into a flare so severe I even developed temporary aphasia. (Luckily, I haven’t had any reaction that bad to a vaccine since then.) I was also having digestive issues, swinging back and forth between diarrhea and constipation with period-level cramps at times.

In mid-October, I decided to research something my doctor had mentioned but that I’d rejected mostly out of fear of the strange word. “Fibromyalgia.” I had told her that my pain was only in my joints, but by now, it was clear that wasn’t true. ​As I read about the condition, everything started to, horrifyingly, amazingly, click. Symptoms I had that I’d not even given thought to matched with the description.

I wrote a long document about all my symptoms and how they’d appeared, making the argument for fibromyalgia. (My pediatrician is the only doctor I’ve had who actually read my extensive explanations.) I was terrified that I was wrong. I was terrified that I was right. After reading all those pages, my doctor just said, “Okay,” and started the official diagnostic test used for fibromyalgia at the time. Most fibromyalgics have at least 11 of 18 “tender points,” quarter-sized areas in specific places on the body that hurt with only the slightest application of pressure. At the time of my diagnosis, you had to have these along with an appropriate combination of other symptoms.

I presented as having 15 of the tender points. I was officially diagnosed with fibromyalgia. (My doctor also diagnosed me with mixed irritable bowel syndrome, or IBS-M, which commonly occurs alongside fibromyalgia. At the time, I had additional thyroid and vitamin D decencies that were easily corrected with little practical result.)

I left the doctor’s office swinging back and forth between laughter and tears, which alarmed my mom–I was ecstatic because finally I had an answer I could give people to explain my symptoms; I was also grieved by the stark reality of my now forever-changed future. The combination of the two was hard to explain.

Fibromyalgia is one of many chronic illnesses that currently have no cure. All that can be done is symptom management. To this day, medical science doesn’t really understand fibromyalgia and the various conditions that often appear with it, although it’s clear that the entire nervous system of a fibromyalgia patient is overactive due to various chemical imbalances and low-level inflammation. Essentially, our bodies process everything as pain. Movement is pain. Touch is pain. Cold is pain. Light is pain. Food is pain. Gravity is pain. Even for those of us who are able to manage the disorder well, an incredible amount of sacrifice is necessary.

My diagnosis set off a natural grieving period. Every day, I’d think of ten more things I’d never be able to do without an excess of struggle and suffering that could push me straight into a severe flare: skiing, playing basketball, rock climbing, riding a real bike, hip-hop dancing, giving birth.

Me in a chair next to a circle of standing women, singing in a Christmassy store
Me sitting bundled up at a choir performance, Winter 2010

Having children had always been a big goal of mine, so that last one hurt badly. I had a breakdown crying in my child development class that year after watching a birth video because it hit me then how impossible that was for me now. I had to give up so many dreams and goals and hobbies, most everything physical, for the sake of my highest priorities. I had to limit my social engagements and leave events early. I had to be more careful about chores and practicing cello. Every single little action had a cost that reduced my ability to attend school and go to church and write my books.

Basically, with my diagnosis, I had to transition from my previous life into one in which I constantly considered my physical self. Sometimes, the thought of having to keep living my life in a body that’s broken seemed impossible to face. Even now, there are days where I’d rather just stay in bed.

But three people said things back then that I desperately needed to hear. The first was my best friend, who offered what I’d most wanted: the simple recognition that my situation was crappy. Even now, what I appreciate most is when people are brave enough face the truth of my situation and acknowledge its ugliness without trying to squirm their way out through health advice or false positivity. The second person who helped me was my government teacher, who told me that that he believed I’d eventually figure out where my limits were and how to balance my priorities. The third person was my orchestra standpartner, who, when I started crying in class one day, came over and hugged me. He didn’t say a word, but the gesture was worth a thousand of them.

Those three events, occurring right in a row, made me determined to find a way to make the best of this new situation. I had to do whatever it took to hold on to the things that mattered most to me, because I deserved them, because I was here, and because I was loved. So by the end of eleventh grade, I found my way into a manageable routine. I started forgetting what it was like to not be disabled.

There were still struggles, however. One statistic I’ve seen says that about a third of fibromyalgics worsen over time, a third get better, and a third stay the same. I’m part of the first group. When I came back in twelfth grade for school registration, I realized that, despite all the changes I’d made, I was no longer able to handle a full school day. As a result, my mother let me try an antidepressant, despite her major and valid concerns about the dangers of antidepressant use in teenagers.

The result? It was marvelous, a true miracle. One of my favorite memories even today is waking up in the middle of the night, a couple days after starting the medication, and realizing that I felt much better. For the first time in a year, there was a brief moment where I wasn’t tired and I didn’t hurt.

My high school senior picture, Summer 2011

I was so thrilled, I went and immediately woke Mom up to tell her the good news. She was scared that the antidepressant was making me crazy, but if she’d been in my body, she’d have understood why I was so eager to celebrate that with her, no matter the time of night. The symptoms continued, of course, but my overall level of illness improved. Through the magic of medication, I was able to graduate high school on a normal schedule–with a 4.13 GPA, no less!

For a continuation of my chronic illness story, in which I later developed multiple other conditions, check out this post.

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