Does a disease impact your identity?

This is the fifth in an ongoing series by Center for Medical Ethics and Health Policy summer interns, undergraduate/graduate students interested in emerging ethical issues.

What are the intricacies of patient experiences? How do patients navigate who they are, how do they define themselves (values, beliefs, personalities) and how does a medical diagnosis fit in? This summer I had the opportunity to take a closer look at these questions, building off of existing work with Dr. Jennifer Blumenthal-Barby, with a specific focus on adolescents who are experiencing advanced symptoms of obsessive compulsive disorder (OCD) and may be contemplating deep brain stimulation (DBS) to alleviate symptoms.

DBS is a treatment that involves brain surgery to implant semi-permanent electronic nodes to give stimulation to afflicted parts of the brain. It has been used in adults for dystonia, however, its further use is regulated to an FDA Humanitarian Device Exemption (HDE). An HDE allows for use without robust FDA approval, meaning that the OCD patients who elect to undergo DBS have typically exhausted all other treatment options and may have varied outcomes.

The specific nature of identity exploration in children and identity exploration with OCD and the convergence of the two produces a highly specific experience. The identity exploration phase in your life exists all through adolescence. From the ages of 11 to 17 years, adolescents are grappling with self-confidence, understanding roles and competency. Their thoughts and behaviors are intensely tied to who they are, and they tend to categorize themselves in an effort to fit in. What does it mean for a child to have a disease that impacts the functioning of their brain and make it impossible to control their actions?

Having OCD at an early age often means that repetitive, suicidal and fearful thoughts are included in the identity exploration phase. For adolescents with OCD, it can sometimes be confusing to know what thoughts are your own and what thoughts are reflective of OCD. To not have an established identity before the onset of symptoms can be disorienting for young patients. Everything about who you are – thoughts, feelings and behaviors – is being ridiculed and probed.

Some common OCD treatments like cognitive behavioral therapy (CBT) serve to mitigate the response to OCD symptoms by teaching patients how to think differently and to monitor stress levels. Ideally with CBT, there is a steady improvement of symptoms and the development of confidence in identifying OCD thought patterns. After utilizing both CBT and medications, if there is no improvement, pediatric deep brain stimulation (pDBS) may be an option proposed by the clinician. With pDBS, the goal is to see instantaneous change. Almost overnight, once turned on, the symptoms are drastically lessened, the very symptoms that were once indicative of their personality and identity.

Therefore, what’s viewed medically as a success is ripe with conflict. Although the symptoms associated with OCD can be negatively impacting a child’s quality of life, it’s a part of who they are. It can be difficult for children and their families to invest in a treatment that directly rejects the constructed positive narrative around the disease that is associated with their identity.

In all, understanding how identity integrates with one’s diagnosis, especially in adolescence, is necessary when evaluating the ethics of pDBS and other emergent technologies. Research that follows the lives and identity formation of patients after receiving DBS is imperative to understanding whether a disease can impact your identity.

– By Taylor Montgomery, summer intern at the Center of Medical Ethics and Health Policy at Baylor College of Medicine and currently pursuing a master’s degree in Public Health in Health Services Organization at University of Texas Health Science