Becoming an advocate, researcher and spokesperson for people with chronic health conditions was never the role Julie Hill thought she would one day have when she embarked on her career as a preschool special education teacher.
Today, she is an assistant professor in Auburn’s College of Education. She is the clinical coordinator for the Clinical Rehabilitation Counseling master’s program, a certified rehabilitation counselor, a national certified counselor and an associate licensed counselor in Alabama. She also works with the EAGLES program—a post-secondary education opportunity at Auburn for students with intellectual disabilities—providing group and individual counseling, as well as supervision of clinical rehabilitation counseling masters students who are completing their practicum with EAGLES at employment sites as job coaches and in classes as academic support.
But nearly 12 years ago, her life was on an entirely different path.
A physical therapist first alerted Hill to the fact that her overly bendable joints and ligaments, frequent dislocations, bruising and clumsiness and translucent skin and stretch marks—which had become so commonplace for her—were not normal and required medical attention. The first rheumatologist dismissed her concerns, but the second doctor confirmed them.
“So, this doctor comes back in the room after examining me and says, ‘You have EDS. There is nothing we can do for you. You need to quit your job and go on disability. Find a clinical trial and don’t come back unless you have a new problem,’ and then she walked out the door,” Hill said.
Ehlers Danlos Syndromes, or EDS, are a group of genetic connective tissue disorders. According to the Ehlers Danlos Society, these disorders are generally characterized by joint hypermobility, joint instability, dislocations, scoliosis and other joint deformities, skin hyperextensibility—or skin that can be stretched further than normal—abnormal scarring and other structural weaknesses.
Although there were many uncertainties for Hill after her abrupt diagnosis in January 2011, she did know two things with certainty—there is no cure for EDS, and her life would never be the same.
“I remember walking out of the building, sobbing as I went to my car and then calling my mom,” Hill said. “I asked her, ‘What am I supposed to do now? I’m only 25 years old.’”
Her new normal began that Friday. The leadership team at her preschool responded to the news of her diagnosis and desire to finish the school year with concern for her well-being, agreement with her plan and offers of help and support. But soon, fear about liability and risk caused them to backtrack and immediately terminate her contract.
“My first thought was, ‘What are you talking about?’” she said. “I work with low-income kids with disabilities. Every single adult in their lives has abandoned them, and now you’re going to pull me—the only stable adult many of them have—out of their classroom? I just couldn’t believe this was happening.”
The next days, weeks, months and years were like this for her—two steps forward and one step back, or sometimes even the opposite. This is often the dance for those with chronic illnesses.
Sometimes it’s a zebra
With most illnesses and disabilities, early diagnosis is key to treatment, support and success. EDS is no different.
The average length people search to find a diagnosis is 10 years, and those diagnosed vary in age from children to adults in their 60s. People often spend years of their lives battling misdiagnosis, frustration and mental health struggles.
“In medical school, new doctors are taught to look for the simplest solution,” Hill said. “So, if you hear hoofbeats, assume it’s a horse. But those of us in the EDS community have learned that sometimes, it’s a zebra.”
The zebra has become a symbol for the EDS community, and it represents thinking outside the box, strength and resilience for Hill. It also represents one of her primary motivations in her work today—hope.
“The whole reason I earned a Ph.D. and wanted to become a professor, researcher and counselor was to help others not go through what I did,” Hill said. “I didn’t want anyone else to feel powerless in the face of a diagnosis, to be invalidated by doctors or employers or to be stuck for a decade trying to recover from those things. I wanted my story to help people find hope and to realize that their lives aren’t over because of their diagnosis.”
Hope is hard to come by when you’re unemployed with a recent life-changing diagnosis, but Hill found it—in education. She began a master’s degree program in education and human resources studies at Colorado State University in Fort Collins.
“I took a year longer to finish than most of cohort because I had a major surgery every semester and did a thesis on adolescents with chronic illnesses in schools,” she said.
It was there she found new purpose in her professional life and a mentor who helped her discover true north on her new journey.
The student becomes the teacher
“Julie’s passion and dedication to those with chronic health conditions initially found its path through research,” said Jackie Peila-Shuster, associate professor and program coordinator in Colorado State University’s School of Education and Hill’s mentor. “She also realized that she wanted to combine her research knowledge with her desire to provide practical ways to serve these individuals because Julie is as passionate about serving people as she is about her teaching and research.”
Peila-Shuster’s work with Hill included teaching her career theory and the career construction interviewing technique. This technique transformed Hill’s career trajectory and later informed her research involving people facing a forced career transition due to chronic illnesses.
“This technique allows people to remember who they are at their core,” Hill said. “When you live with a chronic illness or disability, you’re constantly seen as that illness and you think of yourself in terms of your limitations and what you can’t do. With this approach, you focus on what you can do and how to make those things possible.”
The work Hill does today as a professor, researcher, counselor and advocate stems from a place of knowledge only found in direct experience and hard-fought perseverance.
“It is very gratifying to know that Julie has combined her passions and strengths in her role at Auburn,” Peila-Shuster said. “I am excited that her work involves teaching, researching and applying evidence-based practices with individuals coping with disabilities in ways that honor their unique struggles while celebrating their strengths. I am just honored that I was invited into a part of her journey.”
Paving the way for work, hard work
Hill’s work is rooted in a practical goal of helping those with chronic illnesses and disabilities live purposeful, productive lives. And meaningful employment is the foundation.
“As a social scientist and the father of a daughter with EDS, I believe Dr. Hill’s work is critical to better understanding the social, emotional and psychological dimensions for individuals with rare chronic illnesses,” said Jeff Reese, professor and head of the Department of Special Education, Rehabilitation and Counseling in Auburn’s College of Education. “My daughter was told she likely would be unable to attend college, but we eventually found the right specialist who offered hope and a way forward. She has a college degree and has begun a meaningful career—one which fits her physical limitations but allows her to flourish professionally.”
Hill recently spoke at the EDS Society 2022 International Scientific Symposium in Rome and is a credible voice offering insight into the connection between employment and disability. She insists the issue is more than earning a living or making lifestyle choices.
“It gives you identity and purpose,” Hill said. “It provides structure and a reason to get out of the house. If you ever doubt this, all you have to do is observe our EAGLES students and how excited they are about going to work. It’s a powerful thing.”
Mary Morton is a sophomore EAGLES student who works at Summer Village and All for Children Speech.
“I love working because I get to see a lot of great people when I go to work,” Morton said. “Working is important to me because I feel useful and helpful.”
Disability Employment Awareness Month is celebrated in October each year, but for researchers and practitioners like Hill, every month highlights this topic. Learn more about Auburn’s programs to equip students to help those with disabilities and chronic illnesses by visiting this web page.
Original source can be found here.
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