Graphic by Kayleigh Woltal
This is not a movie type of sickness. It doesn’t go away when there’s no one there to watch. It’s not Christmas miracles or a diagnosis within 15 minutes or less. It’s not hot doctors flawlessly performing life-saving surgeries to a Snow Patrol song. No, the realities of being disabled at the age of 22 are way less romantic.
There’s no real story behind it, at the dismay of able-bodied people who seek tragedy so they can pout their lips, squeeze my arm and say, “you’re so brave.” I played sports all my childhood until an unexpected and debilitating hip pain sent me to a sports medicine specialist. And then a radiologist. And then a physical therapist. And then back to sports medicine. Then, finally, back on the basketball court where I thought I belonged. I was injured during my first game back. And this happened every time I was cleared to return to the various fields and courts of adolescent sports teams. By age 15, I had done irreversible damage to my body.
There is no one true cause of fibromyalgia, but it can be traced to genetic, physical and emotional trauma, stress and infection. About 64% of people with fibromyalgia experienced physical trauma as children. Despite this, according to CDC, only 7.1% of people aged 18-44 get diagnosed with any kind of arthritis. Because older people are most often diagnosed with fibromyalgia, it is unknown the exact amount of children living with fibro because of consistent ageism in medical fields. A majority of the time, age is one of the biggest factors in medical decisions about medication, treatment and even what tests they run for diagnosis. I was 20 before anyone even thought to take a blood panel to test me for an autoimmune disease or anything else that would cause my pain. The first symptoms of fibromyalgia are often thought to show themselves around the age of 28, but for people like me, it’s much earlier. It can often be passed over as growing pains, which can very easily be the first sign of chronic pain or the result of “playing too hard.” These misconceptions about age and chronic illnesses result in a heartbreaking lack of concrete diagnoses in children and can lead to patients not wanting to go to their doctors with pain issues because of the lack of training, testing and empathy. In fact, veterinarians get more training in how to treat pain than doctors do.
I endured flare-ups because of weather changes, diet and physical activity; I was plagued by uncomfortable sleeps that would impact my waking hours. Pain that sent able-bodied people to the emergency room was the baseline of my pain threshold, and I was forced to operate high school and much of college as someone with an undiagnosed, painful disability. My hips were always the worst. The best way I can describe it is a quick, burning stab of pain through my hip bones, around my lower back, and down my legs with every step. The inflammation in my knees and ankles would join the pain party and effectively ruin my day. Sitting didn’t make things much better. The pain would become stiff concrete blocks and make it impossible to get comfortable, no matter how or where I was sitting. When I went to the doctors, they didn’t believe me because I could stand, walk and even run if I needed to. I was accused of lying, given physical therapy exercises and told to return in six to eight weeks. In fact, many rheumatology researchers believed that fibromyalgia was a figment of one’s imagination and would not be recognized by the World Health Organization until 1994. It would take 10 years for a doctor to diagnose me with fibromyalgia, a chronic illness that affects muscles, sleep, memory and mood. There are even cognitive issues associated with fibro, often called fibro fog, that make it difficult to focus and, in my case, leads to becoming disoriented. I can’t tell you the number of times I’ve had to ask people to repeat what they just told me or walked in circles around Target because I forgot what I came in to buy, and if I do remember, I then realize I have no idea how I ended up in the beauty department when I was supposed to be in the grocery aisle. Fibromyalgia symptoms also get worse right before and during menstrual cycles. I’ve gotten cramps that have literally knocked the wind out of me and have even made me dizzy enough to feel like I was going to lose consciousness. My rheumatologist, a doctor specializing in musculoskeletal issues and autoimmune diseases, told me I’m one of the youngest people he’s ever diagnosed with this disorder. So, that’s fun.
The differences between visible disabilities and invisible disabilities can be a trip if you don’t know. When we think of visible disabilities, we think about people who use mobility devices such as canes, walkers, crutches and wheelchairs or people with paralysis, cerebral palsy, muscular dystrophy and more. Basically, a disability you can see with the naked eye. Invisible disabilities are the opposite. They are disabilities that you can’t see, and are “hidden” or “non-apparent.” Such disabilities include fibromyalgia, autoimmune diseases, mental illnesses, attention problems, diabetes, pulmonary and cardiac conditions, and more. Being young with an invisible disability is one of the most unique experiences of my life. It’s required me to have difficult conversations with friends and family, mostly about what I can’t do and when. There’s nothing more humbling than having to explain to your classmates that, no, you can’t go see the art installation at the student center because the walk is all uphill and half a mile away from where you need to be. “If I go, I won’t be able to enjoy it because I’ll be in so much pain.” Recent construction on my college campus has only exacerbated my chronic pain and has caused me to either turn around and not go to class or push through, taking alternate, hilly routes that make the pain so bad I can’t focus once I’m in class. This has led to awkward emails with professors and classmates to apologize for my tardiness or absences because of the lack of communication from the university. Then, there’s the inevitable discussion surrounding the idea that I don’t “look disabled.” To which I usually respond, “the Icy-Hot and knee braces weren’t enough to tip you off?”
Much of my interactions with others when it comes to my fibro are talking about what I can’t do. I can’t go on hikes through the beautiful Texas hill country because my knees can’t handle the incline. I can’t sit in a car for too long because my sacroiliac joints will make me feel like the seat is made of nails. I can’t immediately pop out of bed when I wake up because my body is too stiff for sudden movements. All of these experiences are valid, and I have no problems talking about them, but sometimes I want to talk about all the things I can do as a disabled person. Because of my disability, I am creative and mindful of how I spend my time in a way able-bodied people aren’t. I’m more connected to my body — knowing all the sacred ins and outs, what can cause a flare and what can relieve pain. I am especially grateful for the days I feel good and especially gentle on the days I feel bad.
If you love someone with a disability, it can be really easy to feel helpless or not know how to help your loved one. Everyone is different, but the thing I always tell my loved ones is that most of the time, I just need someone to listen and believe my pain. Don’t offer solutions unless they ask for them. Don’t tell them about your cousin’s roommate’s boyfriend who did hypnosis and was suddenly cured of their chronic allergies. Don’t assume that they hate you if they cancel plans due to a flare. Ask what you can do to support them. Offer flexible, accessible plans for hanging out. Let them cry and wallow and know that they’re not being pessimistic. They’re in pain 24/7/365. They’re allowed to be sad, angry and frustrated with their disability. Most of all, love them fiercely and wholly because they deserve it.
I didn’t expect to be 22 and tracking my pain via two separate apps, or scheduling specialist appointments or spending days in bed fighting a flare-up. But that doesn’t make me any less creative, loved or worthy. It’s just a part of me and my story. In the same way, the hot doctors will always find the cure, win the award and fall in love all by the end of an episode. No matter how hard or scary the stories get, there’s always hope at the end. There has to be. Otherwise, we would never turn on the episode or get out of bed or find ways to keep living despite all the pain.