Living with an invisible disease — my struggle with fibromyalgia
A day in the life of a teenager in America is full of both physical strains and social strains. Whether it be clubs, drama, debate tournaments, or just plain studying, all teenagers (or at least all of them I know) share the experience of being exhausted by all of the expectations we strive to meet. Unfortunately, there are teenagers who deal with the added distress of struggling with fibromyalgia. I am one of them.
In 2010, I turned 13 and thought that my world would change for the better. My world did change, but sadly, not in a way I would call better. While my friends were enjoying the end of middle school, I spent the majority of my eighth grade year traveling in my grandmother’s Camry to downtown Raleigh for doctor’s appointments. Pain rippled throughout my body and I was extremely confused. What could be causing pain so intense in a 13-year-old girl that she wasn’t even able to go to school? Ten different specialists, dozens of x-rays, neurological tests, four MRIs, 20+ vials of blood, countless prescriptions, therapy, truancy charges, and false diagnoses revealed an explanation as invisible as my disorder. The question mark over my medical dilemma lingers over my present day, but since I’ve suffered and stuck to my “story” of being in pain, doctors are less reluctant to confirm that I have fibromyalgia.
Fibromyalgia is a neurological disorder that concerns pain processing in the central nervous system. Fibro causes immense distress in the way it shows the body how to perceive pain. Along with the incredible amount of unnecessary pain, fibro brings anxiety, depression, difficulty with memory and concentration (fibro-fog), fatigue, increased menstrual pain, trigger points, swelling, muscle spasms, headaches, and other overlapping chronic pain disorders. I cannot begin to elaborate on the extended side effects of these side effects, but as if fibro is laughing in my face, I cannot fully remember what symptoms I encounter.
The recollection of pain comes in avalanches of distress for me. I usually experience the intense turmoil of fibromyalgia in the winter, or whenever cold fronts shatter the air and its frail victims. My limbs cannot contain the strength possible to function during those cold spells. Fibromyalgia’s lengthy sentence comes and goes for some, but, as a teenager, it’s disheartening. For the rest of my life, I will never be able to remember living without every waking moment marked by pain.
The abnormality of fibro weighs on my shoulders when I’m asleep, awake, or anywhere inbetween. I wake up at 5:45 each morning in order to be shuffling around by 6:20 a.m. The heaviness of my body pulls me down and pains me as I take a shower, put on my clothes, and put my totebag on my shoulder to head out to school. Any sense of touch creates extreme levels of pain for me. Touching my arm, poking my leg, and brushing against my back hurt as much as twisting my ankle. My distraught reaction is a lot like a dog crying in pain and distrust after you accidentally step on its paw.
The pain prohibits me from being a teenager. Thanks to fibro, I cannot dress up in my favorite lace jazz pants, black sweater, and Converses during the winter. My hands are crooked and shake too much to apply makeup. I struggle with applying eyeliner, because my hands hurt too much wrapped around a brush. The uncomfortable school chairs make me weep when I return home, because they destroy my concentration, forcing me to focus on the overwhelming pain I feel. I used to excel in school, but now, I can barely think fast enough, and come off as ditzy. I feel like I’m constantly struggling to maintain the fragments of my intelligence I lost due to fibro medication (Lyrica) and fibromyalgia itself.
My GPA (a 4.25 weighted), became my ball and chain in school, rather than an accomplishment worth sharing. During the year, my schedule is dictated by the weather. Cold weather causes agonizing, excruciating pain that races down my spine and branches through my limbs. If a cold front passes, rain falls, snow falls, or temperatures drop, I freeze like the Tin Man, except there isn’t any oil to move my joints. The way I get sleep should be considered a torture method. Many people feel refreshed or renewed when they wake up after 8 hours, but I feel completely restless and exhausted. I toss and turn for hours in pain, because the pain signals interrupt the sleep cycle. I cry intensely whenever I think of sleep; school usually means a lack of sleep, but I am further deprived without choice. My biological system cannot allow me to rest, and continues to tense my muscles in a constant state of flight or fight.
With most schools starting at 7 a.m., my body struggles to run on six hours of sleep (which really feels like two). The exhaustion prevents me from hanging out with some of my closest friends. In the early stages of having fibromyalgia, I used to be able to do debate, hang out with my best friend, Claire, and journey with my friends across Cary. Now, I spend my time huddled down, trying to make up for the nights of lost sleep. The lack of sleep and the endless pain contribute to extreme depression. The pain yearns for my thoughts to leap toward suicidal thoughts, and I was obsessed with death for years. There was a time when I searched for ways to end my life, because nobody could help me and I couldn’t face living the rest of my life knowing that I’ll always be in pain. I still have these thoughts, and I believe I always will as long as I emit pain. The whole idea of having fibromyalgia embarrasses me. I’m embarrassed that I am constantly being called crippled, disabled, or chronically ill. I’m embarrassed that fibromyalgia makes me feel like I’m 67 instead of 17. I’m embarrassed that I will never be able to be an artsy beat poet like Patti Smith, or a rock ‘n’ roll guitarist like Keith Richards.
Some close-minded people do not believe in an invisible pain syndrome and act as if my fibro isn’t a real thing. When the pain first started, nearly everybody I knew said I was faking it. Multiple doctors said I was too young to feel pain and that it was just “depression” or I was making it all up. Nobody advocated in my favor, and everyone allowed the healthcare system to give my abusive father a reason to harass me over my pain syndrome.
My estranged father thought I was making it up so that he would have to pay extra money for medical procedures. He thought I enjoyed having my blood drawn, taking new medications, going through MRIs and questionnaires, and being told that I shouldn’t feel how I felt. His views were held by my social worker, who forced me back into school with truancy charges, even though I had medical paperwork documenting all the tests my multiple doctors were putting me through. Nobody believes a 13-year-old though, and it wasn’t until this year, at the age of 17, that my doctors finally acknowledged that I do suffer from fibromyalgia and multiple other chronic pain syndromes. Hell held no candle to the medical and emotional trauma I went through trying to gain validity in feeling my debilitating pain. The ordeal of being put through the system with an unknown pain syndrome left me frustrated beyond my comprehension. The whole world pits itself against chronic pain sufferers, and I’ve fought very hard to get nowhere and everywhere with spreading awareness for a disability that over 5 million people have.
In my life, the struggle of fibromyalgia played out ugly at school. The Wake County School System did not accommodate my needs as a disabled student during the year I discovered I had fibromyalgia, and I taught the whole 8th grade curriculum to myself and passed the end of grade final exams. Even today, I have to advocate and provide help for my needs on my own. I watch the school system laugh at my struggle to be the best student. Most of my teachers don’t believe me when I talk about fibro, and disregard it entirely each semester as I rip my hair out in stress. I could not count the mental breakdowns I’ve had trying to keep up with the rest of the class. I always manage to make it work without my teachers knowing how hard I sobbed nearly every night fighting pain. Our schools need to change how they receive students who suffer chronic pain. We need more time to cognitively process assignments, complete assignments, and extra days of absence when the pain becomes too tough to bear. Fibromyalgia exists, and I demand our school systems recognize our battle with a lifelong struggle between manageable and unmanageable periods of pain.
People who falsely claim to be in pain give those of us with fibromyalgia such a bad reputation. My pain does not exist for perks, closer parking spots, or pain medication. If I had a choice, do you think I’d go through almost a dozen medical professionals disappointing me with their confusion? Do you think that it is easy to accept how much pain I am in, and that all of that pain has no cure? There isn’t a day I live that I don’t wish I didn’t have fibromyalgia. I want to go on impulsive trips to the beach, or the mountains, and I can’t. I can’t go anywhere without bringing my medications, and if I go too fast, my body recoils and retracts in spasms of hurt.
I’m tired of living in a world without a cure for fibromyalgia. Treatments never last long, and I ache for the erasure of the everlasting pain. I exist among everybody else in my school, only to be isolated by fibromyalgia. All the hands that reach to help me literally hurt me, and more than ever, I need the public to acknowledge that over 5 million people feel that way. If I can’t live in a world without fibromyalgia, I’d appreciate a world that had more tolerance toward fibromyalgia. Fibromyalgia lives within the girl who cannot wear jeans often, who cannot be stylish, and who struggles getting in and out of her seat. Fibromyalgia lives within invisibility, and I hope that each and everyone of you expands your kindness to anyone who tells you that they have fibromyalgia. You’ll change their world.
Erika Christiana lives for hedgehogs, breadsticks, rock ‘n’ roll, debate, Netflix, and writing. When she isn’t listening to David Bowie or The Rolling Stones, Erika hangs out with her best friend and boyfriend at Kroger. Although introverted, she loves displaying her quirks to the world.