A therapist’s perspective on the value of personalized healthcare
How a mental health practitioner approaches conditions like Huntington's
One of the many issues my wife, Jill, faces as she battles Huntington’s disease (HD) is dealing with mental healthcare providers who treat HD patients by the book. Here’s what I mean: They follow a very specific, rigid protocol that makes her feel like she’s not being seen as an individual.
But she’s had the good fortune to have Alexis Ryan, a psychiatric nurse practitioner, as her therapist. We recently reached out to Alexis and interviewed her via email. Jill thinks highly of her, and the reason is simple: Alexis treats her as an individual rather than as a “protocol” who fits in a box.
Alexis agrees with Jill that therapy shouldn’t be protocol-based.
Alexis Ryan is a board-certified psychiatric nurse practitioner. (Courtesy of Alexis Ryan)
“With any specialty or focus in healthcare, we see a very top-down approach, where the data — no matter how well-researched and vetted — becomes this inflexible standard against which each individual patient’s experience must be tested,” Alexis said. “You report symptoms to your doctor and are either validated, because your experience matches the data, or dismissed because it doesn’t. Racism, classism, and sexism flourish in this kind of dogmatic and authoritarian approach, and we see the heartbreaking results of that all the time, with unique or marginalized individuals having consistently poorer health outcomes.
“It perpetuates the significant power imbalance within the doctor-patient relationship,” she continued, “and encourages some practitioners to devalue the experience of their patients, which — aside from making all of us hate going to the doctor — truly delays or altogether prevents adequate treatment and care.”
As I mentioned in a recent column, we can use our collective voice to encourage positive change within the medical community. Many doctors, nurses, and therapists still lack a deep understanding and awareness of HD and its mental and physical effects on their patients.
A case in point is Alexis, whom Jill considers a model of the kind of deep, empathetic listening that is needed more in the medical community — mainly because so many healthcare professionals, like Alexis, are clueless at first when it comes to HD.
“I think I had about five minutes on Huntington’s disease from one lecture in a single class in all of nursing school, and that’s it,” Alexis said. “I couldn’t have even made an educated guess when I first met with Jill. Even if I’d been more familiar with this pathology, though, no method could have possibly taught me more about it than just letting Jill — in her own words, at her own pace, and with her own indelible wealth of experience — tell me about Huntington’s.”
This mindset, Alexis said, is something she “passionately” applies in her practice.
“I absolutely despise the wholly outdated model of healthcare that’s very hierarchical and paternalistic, where the healthcare professional has all the authority, and the flow of information goes in one direction only: from provider to patient,” Alexis said. “I have expertise in psychiatry, sure, but that expertise on its own doesn’t really get us anywhere. It’s when we combine it with the expertise possessed by each and every one of my clients — their knowledge of what it’s like to be them — that we’re really able to heal and grow. I view my partnerships with my clients as collaborative and wholly equal.”
But, to her credit, anytime she encounters a condition she’s not familiar with, Alexis said she spends a few weeks researching it on her own during her off hours, which is a mindset Jill and I hope more medical professionals adopt when dealing with HD patients.
Alexis added that almost every clinician has some sort of routine supervision, or peer-to-peer consultation, that provides an opportunity to pick the brains of a medical director or fellow practitioners for any relevant experience or insight. At her current job, that equals one hour per week. But she emphasized that her go-to source of information is her clients.
“Over the first handful of sessions with Jill, I was just riveted listening to her describe her own experience and eager to learn everything I could from her about it,” she said. “And it was most of what we talked about during each session. Now, after three-plus years of working together, though we might go months without discussing Huntington’s at all, when the subject does come up, it’s like grabbing an old book off the shelf and opening it to the dog-eared page. We just start the next chapter and keep learning. Together.”
In future columns, I will share more from our interview with Alexis as we hope to inspire more gene-positive people to find the kind of empathic and inquisitive therapist that Jill has found in Alexis. No one should have to settle for mediocre mental health help, if they choose to go down that route. Stay tuned in the months ahead.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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