Young but mighty: creating a stir through journalism and activism.
Sixteen-year-old Katy Brennan lives with a host of chronic illnesses. She has Ehlers-Danlos syndrome (EDS), celiac disease, postural orthostatic tachycardia syndrome (POTS), chronic fatigue syndrome, hemiplegic migraine, and severe low back pain from kyphosis and mild scoliosis. All of these conditions limit Katy’s ability to be a “typical teenager.” Many in her position would be angry at the world, but not Katy. She is finding a way to make a positive societal impact through her experiences.
Growing up, Katy seemed to have constant problems with her joints and spine. She was diagnosed at 12 with mild scoliosis (a 16- to 20-degree curvature) in her spine. In eighth grade, she needed surgery to repair a dislocated left shoulder. As she recovered, she managed to dislocate her right shoulder carrying her backpack. Six months later, she underwent another surgery to repair the right shoulder.
This didn’t seem normal to Katy, but those treating her kept saying she was fine. They brushed aside her complaints as growing pains or normal joint hypermobility for children.
It wasn’t until her freshman year of high school when her knee gave out causing her to fall down the stairs at school that her orthopedic surgeon questioned Katy’s loose joints. She was referred to a geneticist to look into a probable EDS diagnosis; following a nine-month wait, that geneticist confirmed her surgeon’s suspicions, diagnosing Katy with hypermobile EDS.
“I ultimately was lucky,” says Katy. “Fourteen is considered relatively young to receive an EDS diagnosis.”
Unfortunately, she cannot say the same thing related to her lower back pain. She believes this is due to her having multiple diagnoses. “I would say that my back hurt really bad and get the response, ‘Well, what’s new? All your joints hurt,’” she shares. Because of this reasoning, it took Katy over three years to receive a kyphosis diagnosis.
“That’s the difficult thing about having widespread chronic pain; when you complain of a new pain, it is treated as normal, and it is difficult to obtain treatment.”
Managing the day to day
Katy’s pain is constant, but the intensity can vary by the day. Her back pain can be so excruciating that the only way to cope is through tears. These hour-long meltdowns happen a few times a month. During these periods of intense pain, she uses heat and music to get through the pain
Additionally, her episodes of hemiplegic migraine (a rare and serious type of headache causing muscle weakness mimicking a stroke) are torturous. Without fast treatment, they can last a long time; one lasted six weeks for her. Thankfully, her episodes are becoming further apart (every three months or so) and Katy is learning to catch the symptoms early to avoid the longevity of the attack.
She also has widespread joint pain in every major joint including her lower back. “A few years ago I thought of it [pain] as a leech,” shares Katy. “It was literally draining the life from me.” After adapting to it, getting some treatment, and turning it into a positive influence in her life, she now describes it as static: sometimes it’s louder and sometimes it’s quiet.
After much trial and error, Katy relies on specific therapies for relief. An anti-inflammatory medication reduces swelling. Progestin-only birth control balances her hormone levels, which has helped to significantly improve Katy’s POTS, joint dislocation, and hemiplegic migraine. Heat helps her back, and she tries to get as much sleep as possible while using a weighted blanket.
The most important part of her wellness routine is physical therapy. “PT is critical for maintaining joint stability,” she expresses. “It also improves my back by strengthening my spine and working on keeping it in alignment. That lowers my pain.”
Not finding the support she needed
What has been disheartening are the obstacles Katy has encountered in order to receive necessary care. On multiple occasions, Katy’s voice was discounted by those treating her.
A therapist once told her that being a type-A perfectionist was the root of her intense pain. Then there were doctors who only wanted to treat with medications like opioids; they also refused to listen to Katy when she said they were not touching or helping the pain. After a year of being unheard, Katy stopped the medications on her own with no withdrawal or increase in pain.
Wanting real answers, she kept insisting on a drug-gene test. But her pleas were ignored by those treating her. It took Katy’s POTS specialist recommending this test (for a separate matter) for her to get the information she had been requesting. And just like she had been telling her doctors for years, her body is unable to process most medications.
Another huge hurdle for Katy was getting people to take her back pain seriously. It was her physical therapist who referred her to a spine specialist after a particularly rough session where Katy broke down from the pain and lack of acknowledgment from the medical system. On her first visit, she was diagnosed with kyphosis. While there aren’t any treatments to help the excessive outward curvature of her low spine, Katy says having a name to describe the pain is validation.
While these challenges impeding her care are frustrating, she refuses to let them break her spirit or psyche. In fact, she is still hopeful for advancements in pain medication (which her body can process) and medical cannabis legislation. (She is unable to obtain a medical card for cannabis in Illinois due to her conditions not being covered under current law.)
In the meantime, Katy has become more outspoken. She is using her experiences to educate, support, and empower others in similar circumstances.
The power of her words
When Katy came to the realization that attending law or medical school would not be feasible because of pain and her limitations, she was upset. Being a lawyer or doctor is all she had wanted to be and pain had taken that dream from her. Yet quickly a new focus entered her life; one she now believes is for the better.
“Between my freshman and sophomore year, someone shared a story from ‘The Mighty’ with me,” explains Katy. “I have always liked writing. Learning ‘The Mighty’ was an online hub to connect people facing health challenges, I decided to submit a piece.” It was accepted and published.
“That was my defining moment. Having my work out there showed me that people cared about my voice and wanted to hear my story. In return, I became an advocate for myself.”
Since then, she has contributed over 30 articles that encompass her honest, raw feelings about who she is, her pain, and the need for societal compassion and change. “It has led me to find a more positive connection with my pain. Rather than looking at it angrily as something that ruins my life, I began to see it as a motivator and a driving force in everything I do; even if it kicks my ass (pardon my language) pretty often,” laughs Katy.
With this newfound change of direction in her life, Katy plans to pursue a double major in college in journalism and political science. Interested in connecting the personal advocacy story to the political side, she wants to better understand the political game to make health care changes.
To intermesh these worlds, Katy interns with political campaigns. She is highly aware that many judge her for aligning with conservative politicians. But she won’t let assumptions deter her. “I work with people I feel are most honest,” shares Katy. “I think many would be surprised how they lean socially liberal in this arena; they just might not make that comment publicly often.”
Finding peace, joy, and support in today
Despite living with low back pain and a myriad of other chronic illnesses, Katy has managed to find positives in her life. She might not be as physically active or able to cheer anymore, but she has a purpose. She has new life goals and objectives that bring her meaning.
Katy is fortunate to have her parents, especially her mom, by her side since day one. Due to her dad’s work travels, he hasn’t been around as much to see the day-in and day-out pain like her mom. Katy’s mom is her rock—she helps her find the right doctors and does tons of research to better understand Katy’s conditions and also the therapies available to her.
She also found some incredible resources. The online sites Suffering the Silence, Diversability, Sick Chicks, and Yoocan provide community support, informative materials, and strength. (Katy now interns with Suffering the Silence and is the digital content manager at Diversability.) She also turns to Invisible Disability Project, Blanket Sea, and Deaf Poet Society for inspiration. She explains how helpful it is to connect with other people with pain: “Through their stories, you see your own and you feel less isolated and alone.”
Katy Brennan is a passionate individual with wisdom greater than her 16 years. As a writer, she is motivating others to tell their stories in hopes of finding acceptance and support. She will not let pain override her story; instead, she is using her experiences to make a difference.
“I wish the general public understood that every individual pain matters. Just because I live in widespread chronic pain does not mean that a flare up in my lower back is less significant. If you want to be helpful, don’t pity me but also don’t say, ‘Oh well, you’re always in pain.’ Every pain is different, and every pain matters.”
The Mighty: themighty.com
Suffering the Silence: sufferingthesilence.com
Sick Chicks: thesickchicks.com
Invisible Disability Project: invisibledisabilityproject.org
Blanket Sea Magazine: blanketsea.com
Deaf Poet Society: deafpoetssociety.com