Amirah Tapia-Howard

Young, Joyful, and Living with Unpredictable Pain

Amirah Tapia-Howard’s voicemail recording is just three simple words, but it’s impossible to listen to them without getting an instantaneous picture in your head of a buoyant, bubbly teen as she chirps, “Leave a message!” It’s a sound bite of only a few seconds, but it radiates energy, enthusiasm, and so much contagious joy you can’t help but smile hearing it. This audio snippet gels with the fact that Amirah is a high school student, a competitive dancer, and a talented musician, but it’s definitely not what you’d expect from someone who has lived with chronic pain for nearly a third of her life.
However, Amirah, who was diagnosed with painful facial conditions trigeminal neuralgia (TN) and geniculate neuralgia (GN)
at age 11, has found that living with these neuropathic conditions has made her more optimistic. “The fact that I can live with such a terrible disease and still smile, laugh, and engage in exciting experiences has assured me that I can achieve whatever I want in life,” she says.
She wants to carry that message of optimism to others who live with chronic pain. “I want to do anything I can to ensure that other young people who suffer from pain are heard, respected, and attended to in a way that I wish I had been,” she says. “People with chronic pain need more representation in this world.”

JOURNEY TO DIAGNOSIS

On an average summer day in Tucson, Arizona, the mercury hits 102 degrees Fahrenheit, a temperature that’s sweltering and uncomfortable for most people. But Amirah, whose condition is triggered by cold and wind, likes it just fine. “I’m enjoying summer so much right now,” the 16-year-old says in July. Her mother, stepfather, and two younger sisters avoid her bedroom because of how warm she keeps it.

It was the summer just before she entered fifth grade that Amirah first experienced a stabbing pain in her right ear that she initially mistook for an ear infection. It eventually spread to her jaw, gums, scalp, and neck, mostly on the right side.

Like so many people who have disorders that cause chronic pain, Amirah had incredible difficulty getting a diagnosis. In her case, it was further complicated by her young age. “It seemed implausible that a 10-year-old could suffer from something that is not supposed to affect people under 50,” she says. “I felt as though my age made it harder to receive a diagnosis, and harder for people around me to really believe me and listen to me when I said I was in serious pain.”

It didn’t help that she wasn’t always able to describe her symptoms to the various health care professionals she saw, or that those symptoms were sporadic, which is a hallmark of trigeminal neuralgia. “I get pain multiple times a day, but the severity and length of the episodes changes,” she says. It is most often a stabbing sensation affecting the right side of her inner ear, jaw, gums, teeth, scalp, neck, and sometimes her shoulder. One neurologist suggested that the cause was psychogenic, implying that Amirah was imagining it. The entire experience, she recalls, was traumatic.

Finally, in December 2016, Amirah received a diagnosis. “I was relieved to know that I wasn’t crazy, that I did have something wrong with me,” she says. But that relief didn’t last long. The reality that she did have a serious illness with no real cure hit hard. “At first, I didn’t really know how to handle it,” she says. “I got depressed for maybe a year or two after my diagnosis.”
That would be an understandable reaction from an adult, let alone a pre-teen just entering puberty and dealing with a ton of other life changes. “I couldn’t picture going the rest of my life with this condition,” Amirah says. Often, the pain comes unannounced, and once it’s there, she says, “You can’t just press pause and give yourself time to adjust.”
Initially, she missed a lot of school and had to sit out and watch during dance classes, causing her to fear she’d have to drop out of dance entirely and be homeschooled.

“I was angry and confused about why I had gotten TN, and I wrestled with my faith for a while because of that too, blaming God for not healing me or hearing my prayers,” she shares. But then she realized, “If I let this disease stop me from doing one thing, I would let it stop me from doing everything. So I try not to let the pain get in the way of doing anything I want to do.”

LIVING WITH HOPE

In the early days after her diagnosis, Amirah tried multiple medications; later, she tried a nerve block. Nothing helped ease the pain, which came in sudden, severe, unpredictable spasms. Cannabidiol (CBD) was the only treatment that seemed to have any effect, but then the disease progressed and even that stopped being effective.

“Trying different things was becoming more stressful and disappointing than just dealing with the pain,” Amirah says, so she has stopped active treatment for now. “When the pain occurs, I typically just brace myself and try to remove any triggers like cold air and immense stress, and I usually try and read a book, watch a TV show, or talk to someone to distract myself from what’s happening,” she says.

Her mother, who had always presented Amirah with the options but left the final decision up to her daughter, even when she was a pre-teen, supported her choice. “Without my mom and stepdad, I wouldn’t have been able to get through it,” Amirah says. “She is my emotional support. She will help me if I need to take a break, and cheer me up when I’m down.”

At school, Amirah has special accommodations. She receives extra time for tests and assignments and can wear hats to cover her ears. Because stress is “a ginormous trigger,” she tries to stay active. Dance is a major stress reliever, and playing music also proved therapeutic: Amirah practices the violin, piano, and guitar.

It helps to have the support of her family, friends, and a new neurologist who “has never doubted my pain,” she says. Not everyone on her journey has been as accommodating, though. “There have been people—teachers, medical professionals, even people I thought were my friends—who treat my pain like a burden instead of trying to understand it,” she says.

That experience has made her a strong advocate for educating people about chronic pain. “I never, ever want to make someone else feel unheard or disbelieved,” she says. “I wish the general public could understand how much chronic pain sufferers have to push to be able to do the things that people without pain can do very easily. For someone with pain, there are many challenges, big and small, throughout the day.”

Something as small as brushing your teeth, certain weather, or even smiling can trigger pain for someone with facial neuralgia. “You don’t think twice about it if you aren’t struggling with it,” Amirah says.

She’s found comfort in online support groups. “I wouldn’t wish this experience on anyone else, but even as supportive as my friends and family are, I also need to know there are people who know exactly what my pain feels like and to what degree it affects my daily life,” she says. “That’s comforting and has made me feel less alone.”

Amirah says she sometimes worries about college, thinking about how the stress will affect her condition. Not as much as her mother worries, but enough. Then she remembers all the obstacles she’s overcome so far, and how she’s remained a good student and danced in spite of the pain. “I figured if I’ve been able to handle all those things,” she says, “I can handle college, too.” And whatever comes after.

—Jill Waldbieser