Personal Life · Social Justice

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.

(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. This has 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 with the fibromyalgia, only noticeable once they became severe. Certainly, the issues I had with running, as discussed in my original fibromyalgia story, are more understandable now that I know I have postural orthostatic tachycardia syndrome (POTS).

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 with chronic fatigue syndrome (CFS) and the aforementioned POTS. This meant, with my four main conditions, 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 have a form of autism. Echoes of this reality can be seen throughout my mental and chronic illness stories. This self-diagnosis brings my chronic illness crisis full-circle, as will be discussed a bit more in a future post. I believe autistic burnout also contributed to this chronic illness 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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