I think it's time for me to share the story of my experience with fibromyalgia. I hope it will help more people understand what sufferers of this condition face. Keep in mind that the condition has a whole slew of symptoms, and each sufferer has their own tale.
Fibromyalgia (FM) is a medical condition characterized by chronic widespread pain and a heightened pain response to pressure. Other symptoms include fatigue, sleep problems, trouble with memory, digestive problems, and sensitivity to noise, lights or temperature.
-- via Wikipedia, the free encyclopedia
Even before I developed fibromyalgia, there were warning signs.
Before the diagnosis, it was easy to dismiss how ill at ease I've always been 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 mother calls it "the Kira shuffle." When I did walk, I put all my weight on the balls of my feet. All of this, as I remember it, was to avoid pain in my heels. I did it until sixth grade, when. I retaught myself to walk in the hopes of looking more normal.
My mother put me in ballet at age three because of my toe-walking, but my clumsiness kept me from excelling in any physical area. Starting in elementary school, I had to undergo occupational therapy because my hands struggled so much with fine motor skills. Many teachers had me type so they wouldn't have to deal with the awfulness of my handwriting. Holding a pencil just didn't work well for my fingers.
Having my hair brushed also caused severe pain throughout my childhood. 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. Once I learned to brush my own hair in a way that reduced the pain I experienced, things improved.
Nonetheless, I was an anxious, moody child. After a bad episode of melissophobia in fourth grade, I started having a tension headache that has yet to stop. I also began struggling with running, which now 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 found it all very frustrating.
When my period started in sixth grade, I had to deal with irregular cycles, moodiness, and extreme abdominal cramps 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 started taking birth control pills in eleventh grade, which has helped a lot.)
That same year, as my youngest brother began the diagnostic process that would end with autism, my mom came to the conclusion that he and I both had Sensory Integration Disorder. It would explain my emotional issues, my clumsiness, my awful handwriting, my strange walking habits, my headaches, and the fact that I couldn't stand to wear regular jeans. I accepted the self-diagnosis easily. For a while, I carried around with me a bag of calming sensory items, including a fragment of my baby blanket and sprigs of lavender.
I ended up throwing that out when I decided to try to be more normal, which also resulted in regular jean-wearing. 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. In doing so, though I don't generally recommend conformity, I did find a better version of myself. It was a massive cultural expansion for me, introducing me to many of the things I love now, and it helped me to gain some greater faith in myself. Self-confidence is something I've always, and still do, struggle with.
I ran into a new problem in seventh grade PE, where they required kids with asthma to use an inhaler so they could fully participate. The inhaler had no impact on my symptoms. I spent the first few months of school struggling through PE and my migraines in math class afterwards. Finally, although she had no idea what was going on, my doctor gave me another medical excuse from running. Halfway through eighth grade, soon after my brother was diagnosed with autism, I got a new diagnosis too: vocal cord dysfunction, a little-known breathing disorder where the vocal chords constrict due to stress or exercise. Since my throat hurt when running, I figured it was a rational explanation.
In ninth grade PE, however, I was confused by the discovery that I could use a stationary bike without setting off those symptoms. Exercise still wasn't fun, but I could handle it. Ever since then, I've used an exercise bike to stay in shape, and nowadays, I think I probably didn't have VCD at all. Instead, I suspect that this relates to my fibromyalgia somehow.
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 trauma to the body or the mind. Sometimes, it's a car wreck. Sometimes, it's rape or abuse.
Sometimes, fibromyalgia is set off by disease.
During my tenth grade year, a swine flu pandemic occurred. People had two different 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. Then 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 their illness because normal teenagers are irresponsible. Like most teenagers doing stupid things, I had no idea what the consequences of that would be.
When my friends and I went to check out the decorations down the street, I had a coughing fit. I almost choked, and my friends had to rush me back inside. I went home with an 101 degree fever. The next day, I stayed home from church, incredibly sore and ill 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 my fever came and went. After one relapse, I went to Urgent Care, where I was diagnosed with 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 (a common nemesis of mine).
Eventually, I recovered, except for one thing: my hips wouldn't stop hurting. I'd wake up in the middle of the night, in too much pain to even scream, feeling as if a burning sword had been thrust into my hip. I'd flip over and then lie there, shaking. It kept getting worse, even moving into my left knee by February. I was losing sleep and becoming more stressed during the day. 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 virus or bacteria. It was supposed to go away by June.
The pain lasted through the summer, but I stayed hopeful. Then, on the first day 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. That 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. I might be permanently disabled before I'd even gotten to live.
My doctor started what would end up being a half a year of blood tests and medical scans. I was lucky. The average fibromyalgic spends something like seven years trying to find a diagnosis. Still, I hit disappointment after disappointment as each result came back normal, offering me no answers.
Meanwhile, as the weather grew colder, I found myself struggling even more as the low temperatures bit through to my bone, worsening all my symptoms. I'd never been sensitive to the cold like this before. I'd always loved snow, but that was changing. I had to go to bed at nine every night. 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 also failing. I needed extra help in math class. I kept forgetting to do basic tasks. One time, I put the ibuprofen in the refrigerator.
In mid-October, I decided to research something my doctor had mentioned but that I'd rejected, more out of fear of the strange word than anything else. "Fibromyalgia." I'd 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 for fibromyalgia. .
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. (Nowadays, diagnosis requires the other symptoms but no tender point test.) I presented as having 15 of the tender points.
I had fibromyalgia.
(My doctor also diagnosed me with mixed irritable bowel syndrome, or IBS-M, which commonly occurs alongside fibromyalgia.)
It's hard to describe the mix of feelings that came with my diagnosis. At first, I was ecstatic because finally I had an answer I could give people to explain my symptoms. Then came the shock and grief, leaving me a confused mess of laughter and tears that my mother found quite alarming.
Fibromyalgia is one of many chronic illnesses that currently have no cure. All you can do is manage the symptoms. To this day, science doesn't really understand this condition, although it's clear that the entire nervous system of a fibromyalgic is overactive due, at least in part, to a strange combination of chemical imbalances. 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. I now have to prioritize everything I do, figure out what the cost of those actions are, and then give up as many of the lesser priorities as is necessary for me to be able to keep doing the greater ones.
The diagnosis set off a grieving period for the death of possibility in my life. Every day, I'd think of ten more things I'd never be able to do without an excess of struggle: skiing, giving birth, playing basketball, rock climbing, riding a bike. Before I developed full-fledged fibromyalgia, I'd gained an interest in hip-hop dance. That was no longer feasible if I wanted to be able to do higher priority activities. I had to limit my social engagements and leave events early. I had to be more careful about chores and practicing cello. Every action I took reduced my ability to attend school and go to church and write my books.
Naturally, my relationships with others changed too. When you love a fibromyalgic, their illness becomes a third person in your relationship. I myself sometimes think of my body as a separate individual, weak and yet incredibly demanding, a parasite and a victim, whose needs I have no choice but to meet. With my diagnosis, I had to transition from my previous life into one in which I have to constantly consider 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.
During my grieving period, three people said something that I needed to hear in order to move on. 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 monstrous 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 standpartner, who, when I started crying in orchestra one day, came over and hugged me. He didn't say a word, but the gesture was worth a thousand of them.
After those three events, I knew I couldn't give up. 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. That was my turning point in this process.
By the end of eleventh grade, I'd fallen 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 unlucky 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, Mom 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 today. For the first time in a year,, there was a moment where I wasn't tired and I didn't hurt. (I scared my mother half to death when I woke her up in the middle of the night full of excitement, but how could I not celebrate?) The symptoms continued after that, of course, but my overall level of sickness improved. Through the magic of medicine, I was able to graduate high school on a normal schedule--with a 4.13 GPA, no less!--and now I'm in my first year of college.
It's still hard sometimes. I'm still disabled. I still have to take really good care of myself, and people still don't understand my reality. But I'm stable for now. I can do all of the activities that matter to me the most, and though I have to fight through pain and fatigue, I know that I'm willing to make the effort to live my life in a way that allows for true happiness.
That's my story. I hope you've learned something from it, whether you're also chronically ill or not! I ask that you all do what you can to support people with disabilities and to acknowledge the realities of our lives. So few people understand, but maybe this blog post will help you to. 😊
(My chronic illness story continues in this post written on 13 October 2018.)
Previous: People Who Inspire Me
Next: Hunger Games Humor
Why I Hate James Pat...
The Lesser Evil: Femi...
PTSD and The Hunge...
Guest Post: 5 Fandom...
My Mayo Clinic Experi...