This year so far has proven to be difficult, though not so much as certain other years. More than anything, I’ve been struggling with a binge-eating problem that has spiraled out of control over the past few years, reaching its peak (I hope!) during the last few months, as I’ve tried to create a new life for myself post-chronic illness crisis.
I’ve restarted counseling because of this, and I’ve discovered that I have a lot of grief about what I lost in that crisis that I still need to process. It’s frustrating because I’ve had to grieve illness-related losses multiple times in the past, and I’d honestly like to move on–but I’m not emotionally ready for that, as it turns out. So I’m processing that grief now, and I’m also trying to reprioritize my writing, since working on my books has consistently been helpful during times of emotional upheaval.
Other updates from the past six months include that I’ve performed and recently finished a significant revision of #OCDStory (🥳), that I’ve finished typing up and rereading my old diaries to help me regain my memory of the crisis, and that I’ve quit attempting to obtain SSI due to the extremely restrictive limits. (I’d love it if you would sign this petition to raise those limits, which is an important issue affecting far more people far more deeply than me!)
Recommended Stuff
BOOKS
Remember that you can see my full list of book recommendations here!
TV SHOWS
MOVIES
MUSIC
My Spotify moods of the month have been as follows:
January: “alternative poprox beats”
February: “alternative beats rise up”
March: “dark, stormy, and fierce femmes”
April: “deep dark indie swagger”
May: “alternative femme fatale beats”
June: “fierce femme salt”
ONLINE CONTENT
Alongside the various short posts I’ve enjoyed on social media the past six months, here are some longer pieces I’d like to recommend:
This article discusses the horrible experience of being a disabled person in the midst of the COVID-19 pandemic.
This thread links to a report about sexual violence at higher education institutions.
This thread links to a website examining the best ways to reduce police violence. (Restructuring the justice system to emphasize community welfare, restitution, and personal growth instead of punitive violence and oppression, as well as addressing systemic white supremacy, is the ultimate goal.)
This website lists alternate resources to call instead of the police in major U.S. cities.
This video explains how best to respond when you see racial (or other) harassments.
This website discusses Palestine and the current need for decolonization.
This article talks about famous artist Frida Kahlo’s experience as a woman with chronic pain.
This Wikipedia page lists different ways different cultures open their fairytales.
Giving the continuing threat of climate change-worsened natural disaster, this thread about dealing with hot weather and this thread about dealing with cold weather seem worth a read.
Thank you for reading! How have your past six months been?
Like everyone who’s been through school, I’ve dealt with a variety of teachers, good and bad. I’ve had teachers who guided me in my writing career and through my chronic illness struggles, and I’ve had teachers who mistreated and disrespected students and who were terrible at actually educating. As a chronically ill person, I’ve also dealt with a variety of ableism. But the worst example of both ableism and teacher misconduct that I’ve personally experienced is that of Kevin and his calculator.
I originally shared this story on my old blog in June 2017, and now I’m posting it here with edits to the writing quality.
During my first semester at BYU – Idaho, I had a religion teacher whom I did not much like. Many of the worst teachers I’ve dealt with have been inflexible people. In general, inflexibility is a toxic trait because we are all different people with our own paths in life, our own best ways of doing things, and it’s important to accept and affirm that. With teachers, inflexibility is especially bad because education is so important and, at the same time, a one-size-fits-all system.
This religion professor may have been the most inflexible (and self-righteous) person I have ever met. He had an extremely black-and-white way of looking at things–and I say this as someone who was first diagnosed with OCD during this particular semester. His assignments were pedantic busy work that displayed no trust in his students’ intelligence or spiritual capacity. He said things like that we would see who was “truly righteous” by whether they chose to watch the Super Bowl on a holy Sunday. (I’m not a sports person myself, but I think that’s a bit much.)
Though I disagreed strongly with his perspective of the world, I didn’t initially have too much trouble with this professor. The worst moment was probably when he said that “disabled people feel entitled.” At least, that was the worst moment, until we reached the last two weeks of the semester.
During the first week of school, as is usual for disabled students, I’d had to work out a set of accommodations with the Disability Office. At this time, as was usual for the first and last weeks of school, I had been verysick. While I’d been in the Disability Office, I’d ended up in tears because of how much pain I’d been in. (They’d encouraged me then to get medical help, which had come in the form of a steroid injection in the butt–a truly delightful experience.)
The accommodation that I used most often while in school was a Kindle for my textbooks so that I wouldn’t have to carry around the too-heavy weight of physical textbooks with my fragile, exhausted body. I was allowed to use this Kindle in classes as an exception to the usual no-electronics policy. When I had given the religion professor the official letter stating that I would be using a Kindle for my texts, he had accepted that with little issue. His dislike of electronics, however, had been quite clear throughout the semester.
Also throughout the semester, we’d had open book quizzes at home on our readings in the LDS scriptures. This required us to page through those scriptures to find direct quotes and minor details. Thinking that the professor understood I did not use physical books, I had used my Kindle for these quizzes–which, admittedly, made it easier to find those pieces of information. I’d aced all the quizzes, which was not something unusual for me. I always did well in school.
Two weeks before the end of the semester, however, the professor called me into his office.
“You’ve been getting better grades than anyone on the quizzes,” he said, “and you finish them very quickly.”
I nodded, unsure where was this was going.
“Have you been cheating?” he asked.
I was blindsided by the accusation. I’d been given hints over the years that teachers might think I was cheating, but my clear integrity and intelligence had prevented any true accusation.
“I’m sorry?” I said to the religion teacher.
“Have you been using your Kindle to take the quizzes?”
I stared at him. “Yes. They’re open book, aren’t they?”
“Yes, but that means a physical copy of the book.”
I shook my head, confused. “But I have a disability accommodation. I told you that at the beginning of the semester. I use my Kindle for my scriptures. I haven’t used anything else on the quizzes, just the scriptures.”
“The rules clearly state ‘no electronics.'”
“But…”
“So I’m giving you a chance to correct this without going to the Honor Code Office. What do you think your grades would be if you hadn’t used electronic scriptures?”
I was not prepared for this, in part because I had been diagnosed only eleven weeks ago for a type of OCD that made me vulnerable regarding moral issues. I tended to mistrust myself and to become deeply self-hating when faced with the possibility of having done something wrong. However, I knew that what this professor was saying made no sense. My Kindle was a disability accommodation. I did not have physical scriptures. How could using electronic scriptures on an open book test be cheating?
Though we went back and forth a bit, the professor was unwavering. He showed no understanding of the unique circumstances. A part of me was almost impressed by his manipulative way of speaking to me and his insistence on posing himself as a magnanimous figure. I eventually gave in and told him that maybe I would have gotten Bs? It was impossible for me to know, but like I said, I was good at school. He accepted that, though with a suspicious look, and I stumbled away crying.
After processing what had happened, with the help of a typical I-have-a-problem-and-no-one-here-to-ask call to my mom, I decided that I needed to push back more. Now that I was away from the immediate shock and could express myself via writing, maybe I could explain in a way the professor would understand. I sent an email to him, my mother, and the Disability Office that I hoped would straighten things out.
Instead, I received a flurry of berating replies. As my mom and I tried to work things out with the Disability Office, the professor repeatedly threatened me with the Honor Code Office, called me a cheater and a liar, and wrote things like, “the guilty taketh the truth to be hard” and “you and God and I know the truth.” I could hardly believe that a fully grown man was speaking this way to one of his students.
I would have given up sooner, especially since I still had an A in the class, but my counselor and my mom encouraged me to continue. Even my dad called the professor “a disconsolate ass,” which was oddly heartening, since my family didn’t allow cursing. We all agreed that what the professor was doing was wrong, and other students needed protection from that kind of behavior. So I continued sending emails throughout the week.
The Disability Office, however, proved to be exceptionally unhelpful, stating that it had been my responsibility to communicate to the professor about my accommodations. Since we had never explicitly agreed that I would be using my Kindle on tests, they couldn’t do anything. Perhaps that was true, but they had to see how inappropriate this all was, didn’t they? I had forwarded all of the professor’s emails to them.
Without structural support, and with my mental health quickly degrading under the stress of this, I finally decided to let the issue go. I sent an email to everyone stating so, though I again pointed out the unique circumstances and the importance of supporting disabled students. The professor replied thanking me for owning up to my cheating and doing the right thing, having clearly not understood any of my points.
I thought it was over. But the next day, in our first religion class during the very last week of school, the professor went off-syllabus with an unexpected case study. He projected it up on the board. It read something like this:
“In a math class, calculators are not allowed while taking quizzes. Kevin has been using a calculator on his quizzes. of taking the issue to a higher authority, possibly leading to failure or even expulsion, he will simply lower Kevin’s grades on the quizzes. The teacher tells him that, instead Kevin insists that he has not cheated and calls on his parents to defend him. Though the teacher has treated him with fairness, Kevin refuses to admit that he has done something wrong.”
Then the professor had the entire class discuss “Kevin” and his cheating ways.
As I sat there, listening to everyone talk about how “Kevin” was a terrible person for refusing to admit his wrongs in using a “calculator,” I had no words. To set aside one of the last class periods to target me, using my unsuspecting peers, and again without acknowledging that teeny tiny detail of my disability accommodation, right after I had let the complaint go, was astounding. Part of me wanted to cry, but things had drifted so far from logical reality that I mostly wanted to laugh. The immaturity! The manipulativeness! The utter audacity!
The professor brought up the issue again briefly the next class period, and then, the semester was over. I considered filing a complaint higher up, but I honestly didn’t want to waste more time, effort, and mental health on a man who, I now saw, was incapable of seeing shades of grey. No matter what I tried, he wasn’t going to acknowledge my point. I knew the truth, and that would have to be enough.
Me and God, but apparently, not him.
After that semester, I was sure to use Rate My Professors before signing up for any classes. In a later year, I came across the professor with his latest religion class, which included a blind student, and I winced. I could only pray that the student would make it through without too much struggle.
Brother Dorman is still a religion professor at BYU – Idaho to this day.
In retrospect, I wish I’d had the resources, emotionally and externally, to continue fighting his mistreatment and apparent ableism. It hurts to think of all the students who are under his power, possibly being manipulated and degraded like I was. You want to talk about “unrighteous dominion”? Look no further. But this all happened in 2014, and I don’t have the emails anymore. Perhaps the school does. I don’t know. I suspect that all I can do is hope that either this professor has significantly changed or a future student who does have the resources will succeed at pushing back.
One of the most important lessons I learned that semester is that rules on their own have no meaning. To follow rules, without question, is to ignore the fact that each rule should stem from an underlying principle.
The principle is what has meaning. Too often, we ignore that principle and let ourselves be controlled by the rule instead, even when it becomes arbitrary or hurtful. When you look at the rules, you see black and white. When you look at the principles, you begin to understand in true color, and then, you are enabled to follow the rules with greater purpose. You become a better, more educated person. You learn how to balance justice and mercy.
There was none of that balance in what happened to me.
Thank you for your time and support in reading this post. It’s wild, right?
Images via Brigham Young University – Idaho on Wikipedia, JamesNichols on Pixabay, Hawaii Open Data on thenounproject, and two unknown artists on pxhere.
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.
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.
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 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.
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.
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 whatpain 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.
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.
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 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.
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. 💜
Now that I’ve reposted the story of how I developed and was diagnosed with fibromyalgia, it’s time to share the story of my struggle with obsessive-compulsive disorder. This was originally posted on my old blog in December 2014 and has undergone some edits.
(This post contains discussion of suicidal thoughts, compulsive self-injury, body image issues, and sexual harassment and assault.)
I’ve had the hallmarks of an anxious personality since I was very little. As a child, I was bossy, stubborn, and precocious, desperate both for reassurance from others and control over my own life. Adults often described me as “high-strung” or “moody.” My first ballet teacher said that I was “the only three-year-old she knew who PMSed.” I had screaming fits about vaccinations and hair brushes and swimming pools and basically everything that seemed somewhat threatening. I cried at the slightest provocation.
Who, me? Spring 1997
The first obsessive-compulsive episode that I remember having was at the age of eight years old, after my mom first told me about sex. Prior to that, I had operated under the idealistic assumption that God magically made you pregnant when it was the right time. The base physical reality horrified me. This aversion to sex is something I’ve continued to struggle with ever since. Distorted societal and religious education about sexuality is one part of the problem. In 2020, I figured out that I’m demisexual, which is also key to this aversion. I’ll talk about that more in a future post.
Because I couldn’t understand why anyone would have sex willingly, my mind jumped straight to rape, and it would not let that idea go. From then on, when I played with my Barbies, they somehow always ended up getting raped by monsters or mythological figures. It was my first real compulsion, and it was both distressing and uncontrollable. Though I didn’t want to do it, I couldn’t make it stop. I ended up throwing away all my dolls to get away from it. Mom mourned the fact that her little girl was growing up, and I let her believe that was the reason because I had no way to explain the truth.
While I was still struggling with my Barbie compulsion, my family moved from the city where I was born to the small town where I grew up. That’s when my mental illness became more public. I went camping for the first time with the Girl Scouts, which was supposed to be all good fun. As it turns out, I am not the outdoor type. After struggling to force myself to use the spider-infested outhouse, I went with the campers to visit a magic tree you could make wishes on. As a girl who loved stories, myths, and legends, I was very excited about this.
But the magic tree was the opposite of magical for me. As we stood listening to its story, a swarm of bees came down from higher up in the mountains and started stinging people. I didn’t get stung, but seeing everyone else hurt and scared set off a panic attack that continued long after they had all calmed down. They tried to comfort me then, but I was inconsolable. All the stress of the past few months seemed to coalesce. Mom had to take me home early, and for four months or so, I suffered from an extreme fear of bees, also known as melissophobia.
When people say that they have a “phobia” of something, most of the time, they’re referring to a regular fear. But a clinical phobia is actually a terror so strong that it destroys your everyday functioning. Panic ruled over me both night and day, seizing control in a deep and instinctive way. I was in a never-ending nightmare where all I could think about was bees. I researched them and came up with a list of rules that I used to protect myself: no wearing bright colors, no wearing the color black, no wearing perfume, no interacting with flowers, no going outside unless absolutely necessary, and definitely no going outside with food. When it came to flying bugs, I ran screaming first and asked questions later. I broke school rules by hiding in the coat closet at recess.
I threw this lovely vest away because of those rules, Fall 2003
During outdoors PE one day, the sight of a bee set off another panic attack. I fled, screaming and crying, to my regular classroom. When my teacher opened the door, my entire body filled with desperate relief. But my teacher looked at me like I was a monster. I was sent to the principal and school counselor, who lectured me about how education was far more important than my silly little fears. It was clear they didn’t understand me. I didn’t understand me. No one ever said the word “phobia.” No one ever gave me the power to understand what I was going through. The entire experience was a major loss of innocence for me–for the first time, I saw how darkness could unexpectedly come from within, and I was shaken and haunted by the reality of my own self.
The phobia ended after I got an accidental dose of exposure therapy. While I was hugging the wall outside at recess, a bee flew by and grazed me with its stinger. The shock of that event snapped me out of my nightmare state. The visceral fear still often welled up. I had to work hard to control myself, conversationally asking all the bees I passed outside not to hurt me. If I was trapped in a room with a bee, I still had a panic attack. But my entire perspective shifted, pushing me past the worst of the phobia. Over time, little by little, my fear decreased.
However, there were many long-term physical and mental effects of my phobia, including chronic headaches and increased sensitivity overall. Something was clearly wrong with me. Part of me shied away from facing it, but another part of me was determined to find the truth. I developed an interest in psychology, and my desire to use creative writing to better understand myself also grew. I needed to understand myself. I was terrified of myself.
When you have obsessive compulsive disorder (OCD), it tends to center on what you care most about in life. My core obsession is personal moral perfection, also known as moral scrupulosity. My secondary obsession, for a long time, was body image, categorized as the separate but related condition of body dysmorphic disorder (BDD). My tertiary obsession is with romance, which is referred to as relationship OCD.
I began developing the body image issues soon after the bee incident. They came from a combination of family issues and my moral OCD making me feel that I had to make up for my lacking integral worth with a beautiful outward image. It started with my nose. Distressed with the way it looked, I began wearing concealer and trying out new facial products that were meant to minimize pores and decrease redness. I hid my face from people, terrified of them seeing it without makeup and even worried of them looking too closely when I did have makeup on. The issue gradually “spread” across my face, though multiple people, including dermatologists, told me my skin was lovely and healthy.
People with body image issues like BDD often suffer from a kind of hallucination where they literally see something in the mirror that isn’t real. In my case, I often saw an eruption of pus-filled pimples, gigantic pores, and general redness across my face, with my nose forming the strawberry-like centerpiece of the imagined disfigurement. My mind basically zoomed in on any small imperfection until it formed my entire image. I was also sensitive about other body parts at various times: my stomach, my hair, my jawline. Sometimes I would have a freakout about something, only to discover the next day that it looked perfectly fine.
I hated this picture, Fall 2004
Meanwhile, I struggled with the feeling that something was deeply wrong with me, that in some way I had broken or ruined the beautiful soul God had given me. I felt unworthy, unstable, and misplaced. With my combined religious and relationship OCD, I came to believe I was destined to “save” someone with my love, and that in doing so, I would be able to “fix” myself.
When I was in sixth grade, our family doctor realized that something was different about my youngest brother. One of the many possible diagnoses was sensory integration disorder, which is now considered a part of the autism spectrum, and for a while, my family thought I had it, too. A year and a half later, my brother was diagnosed with autism. My problems, which seemed so much smaller than his, faded into the background. I had at least discovered through research what a phobia was, but I didn’t know how to make right my inner brokenness.
I did my best to make myself into someone as perfect as possible. As I went through the crucible that was middle school, I struggled to act more “normal” while also strictly adhering to all the guidelines set out by my church, my parents, and my teachers. I strove to excel in my grades, in my cello-playing, in my outward image, in my religious observance, in my every choice. I hoped that eventually this would make me enough, but I knew I would have to work a thousand times harder to be half as good as other people. I wrote thousands of pages in my diaries ruminating on what was right and wrong and planning the details of my life. I was torn between the urge to overshare so people could run in the other direction before I got attached to them and the need to at least present myself as a worthy person. Any challenge to my morality threw me into a spiral of self-hatred where I had to justify myself not only to the challenger but also to my own unrelenting mind. I cried all the time. I constantly sought reassurance from the people I trusted.
This was all exacerbated when I first fell in love. I had always been a romantic who aspired towards marriage, but none of my childhood crushes came anywhere near the intensity of the feelings I had for the guy I met and fell for in seventh grade. I didn’t choose him. I actually hated him at first. He was reckless, brash, and often cruel. We had no interests in common. But I saw a brokenness in him that matched the brokenness in me, and the fact that he was able to be so unrelentingly defiant in the face of that intrigued me. His clever sense of humor, his passionate nature, and his apparent reciprocal interest together pushed me in head-first.
In some ways, this experience did improve my life. The guy I loved inspired me to become a far more prolific writer, taught me to fear myself less, and gave me the courage to push back more against adults who behaved in abusive ways. I needed that defiance in my life. I needed the push to step out more into the world.
But my OCD also turned my feelings for him into a giant twisted mess. I was convinced he was my salvation and I was his, and that led to my romantic feelings becoming a raging obsession. By the time I hit eighth grade, I was spending hours a day writing in my diaries about this boy did. I couldn’t think or talk about anything but him. I don’t know how I maintained any friendships through this; ironically, this was probably the point in my life when I had the most friends because I was trying so hard to be “normal” enough for people to like me.
Portrait of a young perfectionist writer, Early 2007
In a spiral of obsessive energy, everything came crashing down. In retrospect, I think this boy probably returned my feelings, but I became convinced that he didn’t. I fell into the deepest depression I’ve ever experienced. I spent hours writing in my diaries about everything that I had done wrong. I blamed myself for his lack of attention, and I did so with violent self-hatred. I wrote over and over again about how stupid I was, how ugly, how useless, how wrong. Ultimately, it wasn’t simply about this boy–he’d just become the focal point for all the problems I already had with myself.
The situation only worsened. I grew up a Mormon, and the LDS Church recommends against dating before the age of sixteen and having serious relationships before adulthood. The Church also doesn’t recommend dating nonmembers. To me, these statements weren’t just “recommendations.” When you have moral scrupulosity, there’s no room for that. To me, the stuff we talked about in church was all set in stone. I was thirteen, and I was madly in love. The boy I loved was basically the opposite of a Mormon. Someone reminded me of this, and my life fell apart.
Two contradictory obsessions began warring in my mind: my obsession with the boy and my obsession with morality. I desperately wanted us to have a deep and epic romance and save the world from evil together, as you do. But I also knew that the Church said I wasn’t allowed todate him, and therefore, all of this obsessing I was doing over him was wrong. The constant mental anguish of having warring obsessions was beyond any description. I felt nauseated all the time, had panic attacks often, and had no brain space left for other topics. I couldn’t decide whether I was more of afraid of the guy returning my feelings or not returning them. I agonized about it nonstop. It was nothing short of torture.
In mid-winter, I reached my breaking point. I no longer cared about either side of the argument; I only wanted it to stop. But I had no control over my thoughts. I described it to my best friend as “the devil and God fighting a war inside my brain,” and with no alternate explanation, I truly believed it.
Portrait of suffering, Late 2007
The only way out, I thought, was death, and it was getting to the point where I was willing to do just that if it would free me. However, like most suicidal people, I didn’t actually want to die. As time passed, I fell further and further into “magical thinking” and denial, which gave me enough hope to stay alive. The obsessions continued to fight in my head for some time, but eventually, as the weather warmed again, they started to quiet.
The turning point came when a friend asked if I could do “study dates.” My mom’s confirmation that those were okay helped me escape the mental spiral. Another thing that helped was that my history teacher took me aside to say that he had read my free writes for class, which included plenty of depressive obsessing and self-hatred, and that he was concerned for me. I mostly just felt embarrassed, but I did start re-evaluating how other aspects of my life were contributing to my mental health issues. Finally, though it was horrifically hard on me, the boy in question moved away. My feelings for him lingered for years, but my obsession faded.
My mental health never again became as bad as it was in eighth grade, but I continued to struggle throughout high school. When my BDD was at its worst, I was going to the bathroom five or six times a day to “fix my face.” I sat in class unable to think of anything but when I could next reapply my makeup. I arrived to classes, concerts, and other events late because I couldn’t get my face just right. I sometimes took a thumbtack to my skin in an attempt to destroy the “wrongness.” For the entirety of ninth grade, I wore only baby doll tops because I was convinced that my stomach was enormous. This also caused disordered eating, where I allowed myself only 1200 calories a day and exercised for hours on end trying to burn the rest off. The urge to exercise became almost as powerful as the urge to apply makeup.
In tenth grade, I took driver’s ed, which was a horrific experience. I’d never been all that interested in driving, and the responsibility I felt for getting it right so that I didn’t hurt anyone was tremendous. Between my new obsession with staying right on the speed limit and the trauma of seeing gruesome car crash videos in class, I quickly decided that not driving was the better choice. That’s still something I’m working on.
In eleventh grade health class, I learned about the existence of BDD and immediately recognized it in myself. I started trying to get better on my own. I fought every day to see around the hallucinations in the mirror. It was a slow and painstaking process with many setbacks, but the low-level antidepressants I started for my fibromyalgia in twelfth grade helped some. I also tried to “become more confident,” since that was the only way I could explain my other mental health issues. That, unfortunately, was not successful. I continued to have panic attacks and crying fits, I continued to hold myself and the people I loved to an unreasonable standard, I continued to ruminate all over the pages of my diary, and I continued to believe that I needed a guy to make me worthy of life. My hope for that was fading, though.
When it came time to leave home for college, I was nervous but excited. I did struggle to adjust, but for a while, during my freshman year, I thrived like never before. Then, various stressors touched on all my unresolved traumas, and I slid right back to where I was before.
Welcome to adulthood, Early 2013
While my “mental breakdown” then was mild compared to eighth grade, the contrast was striking against how I’d been during my first semester. I was constantly crying and panicking over little things, mostly related to men and misogyny. I had to keep leaving in the middle of classes to get a hold on myself. I also was developing worsening body-focused repetitive behaviors (BFRBs), which are compulsive actions that damage one’s own body. Examples include excessive hair-plucking, skin-picking, and nail-clipping.
Finally, a friend suggested I get free counseling through the college. I argued with her about that, convinced that this was just me reverting back to “who I really was” and that counseling couldn’t fix something like that. After that elementary school counselor, I didn’t have much faith in counselors anyway. I told her that we didn’t have to be friends if she didn’t like the real me. That’s when she said, “But wouldn’t you always like to be the way you were last semester?”
With that surprising thought in mind, I agreed to try. The student counselor I saw turned out to be really kind and thoughtful. She didn’t diagnose me, but she did help me work through some unresolved traumas, she supported me in my decision to transfer colleges, and she got me through to the summer. Unfortunately, I couldn’t seem to find a good counselor at home. I also experienced sexual harassment over the summer that led to me breaking down worse than ever. I didn’t have a lot of support from others with that, and I once again lost all faith in myself. For a while, I had nausea-stricken panic attacks every time I left the house. My BFRBs worsened to the point where I was now getting infections in the places where I had ripped my skin open with tweezers.
I pushed myself through the summer with help from a few friends whom I trusted to protect me outside the house. (Less helpful was a trusted adult telling me that if I had more faith in Jesus, I wouldn’t struggle so much.) When I arrived at my new college for my sophomore year, my mental health immediately crashed again. So I rushed to get into counseling. There was an initial consultation with a woman I didn’t think believed or liked me. But I was then assigned to an anxiety specialist who immediately diagnosed me with OCD.
Somehow, though I had never considered it before, I knew what he was going to say just before he said it. The diagnosis was both shocking and obvious. Though I had previously believed the stereotypes about OCD, which depict it as being all about germs and organization, the counselor’s explanation ofmoral scrupulosity led to everything falling into place.
A girl with a diagnosis, Spring 2014
All the questions and confusion and wrongness that I’d spent so much time agonizing about suddenly made sense. Suddenly, I had the answers to my life. Of course, my OCD didn’t take that lying down; I ended up sobbing on the phone with my mom for over an hour after that appointment about how I was “a liar” because my mental illness was exaggerating my feelings.
But on the whole, things began looking up. My low-dose antidepressant was changed and raised to a dose that was appropriate for OCD. This reduced the strength of my obsessions and made it much easier for me to resist my compulsions. I attended regular counseling, where I unlearned a lot of unhealthy thought patterns and reframed my perspective of the world. (Just knowing that I have OCD makes a huge different for me in being able to control it!) I also named my OCD “Codi” and gave her a separate identity, which helps me distinguish between obsessive thoughts and healthier ones. This concept is what ultimately inspired #OCDStory, with help from my writing friend Julia Byers.
I returned home again after that semester to try and get everything together. There, with a new counselor, I learned about how my OCD helps me as well as hinders me. I figured out how to use it in a healthy way instead of an unhealthy one. I processed more of my past traumas, and I slowly unwove the tangled complexities of my mind. Over time, I realized how much pain I had been in and how very intense my self-hatred had been. It honestly wasn’t until I started feeling better that I was able to see how much I’d been struggling. When I experienced self-love for the first time, I cried. I never could have imagined the incredible beauty of that feeling. I never could have imagined before how happy and at peace I could be.
By the end of 2014, I had my OCD under an appropriate amount of control. I still relapse sometimes. It’s hard to fight the part of you that’s most desperate to protect itself. But I’m BDD-free, which is a huge victory, and I’m able to manage my mental health as a whole. I am incredibly grateful for my diagnosis, for my new understanding of life, and for the people (and the emotional support cat I adopted) who have helped me along the way.
Spartacus the emotional support cat, Fall 2014
I want to pass that joy on to you, too. So if any of this sounds familiar, please seek help. If you suspect that there’s something not right with the way you’re feeling and thinking, get help. You have no idea how much it could do for you. If you have loved ones who are experiencing something like this, I also hope this post will help you better understand. I’ve been fortunate to respond so well to treatment, so keep that in mind.
Someday, I hope my #OCDStory will be available to the public to offer additional insight. Writing this novel has been a difficult, complicated, and revelatory experience that has taught me so much more about my own mental state. I think it really could be The One that gets me published.
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 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.
Aftera 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.
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 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 hipswouldn’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 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.
This week, for my very first repost of content from my original blog, I’m sharing an updated and revised biography! You know, in case I’m famous one day and people want an official life story to refer to. This post combines two previous posts, one from August 2012 and one from September 2019.
(This post contains discussion of suicidal thoughts.)
I was born in 1994 in Albuquerque, the largest city in the state of New Mexico. I was an adorable little thing, talkative, feminine, and precocious, though also sensitive, perfectionistic, and physically inept. When I started walking, I did it entirely on my toes. I also was obsessed with the Disney movie The Little Mermaid, which revealed both my musical skills and my romantic nature.
My first brother was born when I was three, and I started my education at a nice but useless preschool. Later, I moved to a public school kindergarten, where I learned to read. I devoured knowledge, so I’d always loved being read to, but I was pretty average at first with phonics. Then, all at once, while I was looking over Clifford’s ABCs, something clicked. I now could read most words with very little effort, a shift that shocked my teacher with its suddenness.
Me in Spring 1995
In first grade, my mom decided to move me to an experimental school where we were homeschooled half the day and taught in a flexible, mixed-grade classroom the other half. It was fantastic. That schooling setup allowed me more freedom to learn at my own pace and level. It was here too that I first got into creative writing. At the end of the year, we each had to do a big project, and my mom and I chose writing. I was invited afterwards to read one of my stories to my brother’s preschool class. Sitting there, with all those little faces gazing up at me, I knew deep in my soul that this was how I could make the most difference in the world.
The next few years had good and bad moments. When I was seven, my second brother was born, and when I was eight, my mom gave me The Talk, which began my struggle with mental illness(so far as I remember). I’ll talk about that more in a future post. During the last couple months of third grade, my family moved to the smaller NM town where I’ve lived since. It was a good place for me growing up–but the stress of the move was too much for my easily overwhelmed mind.
After a summertime incident at Girl Scout camp, I experienced about four months of melissophobia–an extreme fear of bees–which really shook me. The adults around me, including a school counselor, didn’t know how to deal with it; I only figured out what it was later through research. That pivotal moment led to me developing a few new physical issues along with a more deeply broken sense of self. As a result, I became fascinated by human-related subjects like psychology, and I started trying to write a full-length novel. I hoped it would allow me to help and inspire others and to make sense of myself and my experiences. (I also very much wanted to see my name on a library shelf.) Around this time, I began playing cello, too.
Writing a novel, especially when you’re that young, is not easy. I attempted it many times before I achieved a story of 100 pages, which my eleven-year-old self then considered to be a full-length novel. I was so thrilled to finally have a book written! Soon after, I finished my second novel, herein called #IceEnchantressStory, and in my Gifted and Talented class, I got to work with a publicist from a minor publisher. From her, I learned about query letters. This led to, that summer, me querying publishers and literary agents for the first time, even though I couldn’t really do it correctly. I submitted an early draft manuscript from my mom’s email with the help of our library’s latest copy of Children’s Writer’s & Illustrator’s Market. Of the 12 rejections I received for that novel, I was most upset by Scholastic’s reply, where they said that they didn’t publish children because they might be embarrassed about their writing when they were older. (RUDE.)
Then the culture shock of middle school hit my sheltered seventh grade self hard. As I continued to struggle with a persistent feeling that something was very wrong with me, I put a lot of effort into teaching myself to be more “normal.” I was also gradually realizing that a trusted adult had been and still was abusing me and other people I loved, which made me all the more desperate to have my words be heard. But I wouldn’t be who I am without all that–especially my very intense first love.
That love defined my existence for the next four-and-a-half years, even though it never led anywhere in reality. It was very hard on my mental health, but gave birth to my most prolific period of writing. My mother also gave me permission around this time to join Scholastic’s heavily moderated Write It message boards, where I learned a lot more about publishing and met my best writing friends! As I wrote more books, I started transitioning from writing MG fantasy to writing YA speculative fiction.
Me in Fall 2006
Eighth grade, unfortunately, was probably the worst year of my life. Very quickly, I spiraled into a nightmarish reality of self-hate and suicidal thoughts, which I then slowly recovered from. In the midst of that, I wrote #PsychicStory, which became my next big novel project. I started submitting to literary agents again. This time, I was able to convince my mom to give me my own email address (dolphinwriter@aol.com, good professional stuff 🐬) and more access to literary agency websites with updated submission guidelines. Ultimately, #PsychicStory got the best reception of all the books I’ve queried thus far, though it brought me 46 rejections too.
At the beginning of high school, I wrote the first three novels of the #ChosenFourStory series, another notable project that helped define me as a writer and for which I received all sorts of support from friends and acquaintances. During tenth grade, I emailed back and forth with the agent who had offered a conditional acceptance of #PsychicStory following an R&R. I learned quite a bit from her about how to edit, but then, she stopped responding to my emails. I didn’t learn until years later that her agency had shut down.
Another highlight of that year was that I started having chronic pain in my hips after the 2009 H1N1 epidemic, during which I caught influenza, bronchitis, and strep throat all in a row. Then, when eleventh grade hit, my post-viral symptoms exploded into full-on fibromyalgia. I had to adjust my whole life to an incurable chronic pain and fatigue syndrome. It was a difficult experience that I’ll share more about in a future blog post. I was also trying to overcome, on my own, my severe self-confidence issues, with limited success. Against my will, I fell for my closest guy friend in my typical unrequited way, which added some heartache to the mix.
On the upside, my mom let me join Facebook, and one of the girls from the Write It boards managed to track the rest of us down there! For the first time, I could freely communicate with my writing friends. They cheered me on as I began submitting #ChosenFourStory to literary agents. Ultimately, I received 26 rejections for that one. I also wrote #ProphecyStory, my fourth significant project. Finally, I graduated from high school with honors in May 2012.
I first attended college at Adams State University in Colorado, double-majoring in music and English. The adjustment to my freshman year was difficult, but for a while, life seemed idyllic. I got my first real job as a copy editor for the school paper, which I loved. I started querying #ProphecyStory, for which I eventually received 25 rejections, and I put out a couple of test queries for another project. However, in mid-winter, various stressors brought up my unresolved past traumas. A friend then convinced me to start counseling with a good but inexperienced student counselor.
Me in Summer 2012
In the midst of that, I decided to transfer to Brigham Young University – Idaho. Additionally, I chose to drop my music major and focus solely on English. As soon as I started at BYU – Idaho, I sought counseling again through school services. I was there diagnosed with obsessive-compulsive disorder, primarily in the form of moral scrupulosity, which explained quite a lot about my life. I switched to a stronger antidepressant and worked on my mental health with a counselor there. I also found an effective counselor at home, finally, who continued that work. The better my mental health became, the more I realized how much I had been suffering.
Around this time, I became a founding member of the Chapter One Events team, initially created by my Write It friends, which now runs two writing conferences for young writers. I also wrote #OCDStory, the next big project that I am still editing. However, I found myself struggling with my fibromyalgia symptoms, which seemed to be worsening in leaps and bounds. I had to quit orchestra mid-semester because of how sick I was, and I haven’t been able to play cello since. In July 2016, I finished my Wuthering Heights-focused thesis of 31 pages, and I finally graduated with my B.A. in English.
I returned home to pursue an online Master’s in Information and Library Science program through San Jose State University. It only took a couple of months, however, for my body to give out on me. After ignoring the warning signs for years, I ended up so sick and exhausted, I could only leave my house for doctor’s appointments. I developed upper body tremors, and I needed a cane to walk. The pelvic pain I had been experiencing also became excruciating, which led to a diagnosis of interstitial cystitis in October 2016.
Though treatment for that began immediately, the level of pain I was in was so bad that I still experience traumatic mental symptoms today. Late 2016 to early 2017 was the second time I was suicidal, thanks to that extreme level of pain; my fear that my growth as a person had stalled out, making my life meaningless; and internalized ableism that caused me to see myself as a burden on my family with no worth. Thanks to a variety of supports, however, I was able to keep going. In July 2017, my brother and I went to Mayo Clinic in Minnesota, where I was diagnosed with postural orthostatic tachycardia syndrome (POTS). With the advice I was given there, I started taking my life back. I’ll discuss my experience with this chronic illness crisis in another future post.
As my recovery continued, I was able to get back to editing #OCDStory. However, it was clear to me now that I would probably never be able to work as a librarian. So I quit my MLIS degree, and, in January 2019, I opened my online freelance editing business. I began writing a new book, #SnowQueenStory, a process that continues today. I was pretty disappointed to realize how slow I had become as a writer. With that blow, however, came an important epiphany that I think will be the making of my career. I’ll detail that more in another post.
Me in Spring 2019
I then trunked the only other manuscript that I still was holding onto, leaving myself a fresh start with #OCDStory and #SnowQueenStory, the two books that I’ve written in and after my lifechanging chronic illness crisis. That’s where we are in my life right now! In total so far, I have completed nineteen manuscripts, I’ve trunked eighteen of them, I’ve received 111 rejections in my search for publication, I’ve had requests for more material from four literary agents, and I’ve been through one R&R.
I look forward to updating this biography some time in the future. Thank you for experiencing some of it here right now! 😊
Kira Thurgood 