Brittney Clouse is on a mission to "expose chronic illness to the mainstream culture," and along the way she's learning about herself, her life with cerebral palsy (CP), and, more recently, her chronic pain.
Clouse, 21, is a featured blogger for Cerebral Palsy News Today, where her "Living Life With CP" column appears regularly. Recently, Clouse was a guest on Move Forward Radio, APTA's consumer-oriented podcast series from MoveForwardPT.com.
In the interview, Clouse describes the ways she pushed herself to gain greater mobility with no assistive devices—at what she thinks is a cost. Clouse believes that her insistence on walking without the aid of a walker from age 10 to 15 ("I just wanted to get rid of it because I hated it"), may have contributed to the chronic pain she now experiences in her hip. "Sometimes I get a little jealous of the people who embraced their wheelchairs or their walkers early on, because I didn't do that and now I have other struggles," she tells Move Forward Radio.
Those struggles have been channeled into her writing but were also central to Clouse's changed perspective on physical therapy.
As a child, Clouse says, her relationship with her physical therapist (PT) was "love-and-hate." Now, "As an adult they've become my friends." She attends sessions 3 times a week and is trying to work in more to help her address spasticity, balance, gait, and chronic pain. And while she admits she used to lie about the amount of prescribed home exercise she did between sessions, she's now diligent about following her PT's recommendations.
Her advice about physical therapy for people with CP? "Do it and don't lie about it. I've only started doing it recently and realized how much it helped."
The onset of chronic pain has added another dimension to Clouse's perspective on disability, leaving her feeling "trapped" and subjected to care that at times seemed disconnected—something she didn't feel as strongly with CP alone. Clouse adds that in seeking treatment for pain "a lot of times you end up feeling invalidated, and you have to advocate for yourself in ways that shouldn't be [necessary]."
Although the pain she is experiencing may lessen or become more manageable with treatment, Clouse knows that her CP will never go away. And she's accepting of that fact.
"I've become more confident and self-aware, and just OK with my body and everything that happens—the environment around me, and people and their reactions," Clouse says. "CP isn't something that defines me anymore. But of course it affects my life every single day."
APTA members are encouraged to alert their patients to the radio series and other MoveForwardPT.com resources to help educate the public about the benefits of treatment by a physical therapist. Ideas for future episodes and other feedback can be emailed to consumer@apta.org.
Want to explore more on the PT's role in the treatment of pain? Join 2016 Maley lecturer Steven George, PT, PhD, for a March 16 live webinar on musculoskeletal pain management principles.