This year, Medicine X examined the relationship between physical and emotional well-being with three breakout panels. Psychologists and ePatients came together in two of the sessions to discuss depression in chronic illness and coping through online communities, as well as the topic of mental health and the whole person.
The conversations centered on five themes: how the uncertainty, fear and overall stress of living with a chronic illness, or being a caregiver, can lead to depression and anxiety; why patients’ desire to be empowered can prevent them from seeking help; why eliminating the stigma associated with mental health conditions is so important; the need to better integrate the training of future doctors and mental-health professionals; and ways patients can identify that they may need mental health services and how to find them.
Ann Becker-Schutte, PhD, a Kansas City-based psychologist who participated in both panels, told the audience, “Living with any of these illnesses, whether it’s rare or well-known, requires a lot of work. There is a burden of gilt, fear and shame that are all rolled into one. It’s not unusual for anyone facing these conditions to get tired and just say ‘I’m done’.”
Sarah Kucharski, a Medicine X ePatient advisor diagnosed with depression, anxiety and fibromuscular dysplasia, gave the audience insight into how depression can take over – explaining that she was shocked to learn during a therapy session that a recent string of major life events (getting married, having bypass surgery and buying a house) had elevated her score on the Holmes and Rahe Stress Scale to roughly 500. “I had no ideas that such things had a rating or that they could be cumulative,” she said. “As a result, I try to be more cognizant and slow down.”
Other ePatients spoke candidly and courageously about some for their darkest moments, with many saying it was challenging to discuss their experiences with depression and anxiety outside their inner circles. “I don’t usually talk about this,” said Hugo Campos, an ePatient with an implantable cardiac defibrillator in his chest. “This will be particularly difficult to admit in public.”
Campos opened up about the severe depression he encountered during the month following a procedure to implant into his chest a cardiac defibrillator, which shocks the heart to control life-threatening arrhythmias and prevent sudden cardiac arrest. Since the device was implanted preventatively, he felt that by having the surgery he had somehow failed himself and continued to be unsure if the device was necessary. There was also anxiety and fear about the device spontaneously shocking him. He turned to his online community to learn how to cope with these feelings. “I felt I would be better of speaking with my peers online, rather than a professional who did not have an implantable device and didn’t know what I was going through,” he explained.
Scott Strange, who was diagnosed with Type 1 diabetes in 1970 and also struggles with chronic depression, also turned to the Internet for support. “My journey to acceptance started when I found my online community. Until I found them, I never really faced it.”
Strange talked about growing up with the knowledge that not properly monitoring his glucose and insulin levels could be fatal. He also addressed the shame and exhaustion that results from “busting your rear end and trying to do everything your doctor says” and not seeing an improvement in your health.
While some turned to their patient communities online, others turned to someone outside of their social networks. When the demands of being a caregiver began to overwhelm Erin Moore, the mother of a four-year-old son with cystic fibrosis (CF) and three other children, she opted not to discuss it with someone well-versed with her situation. “Initially I sought help outside of the CF community because I was aware of how many people rely on me for my strength and I didn’t want to admit a weakness.”
Campos echoed this sentiment saying, “As ePatients we wonder: How can I be empowered if I am weakened by my depression? How can I ask for what I need and want?”
The cultural stigma associated with mental-health disorders is a major barrier, said Schutte. “We shouldn’t be afraid to say that I’m suffering today, this hurts today or I don’t know which way to go. Because that is honesty and it takes courage to be honest,” she added.
Becker-Schutte’s solution is to cross-train medical and psychology students. Integrating the curriculum would allow psychologists to learn and better understand medical issues, while teaching physicians how to talk more effectively with patients about their emotional well-being and make appropriate referrals, she said. “Physicians have a really important role in normalizing mental health services,” she said. “They need to reassure patients that what they are feeling is really natural and encourage them to talk with someone that specializes in their health condition.”
Patients chimed in on this issue and added that they wanted physicians to refer them to mental-health professionals with who they knew well, trusted and felt would be a good match with their personalities. In addition, panelists advised interviewing potential therapists and talking to two or three people to determine which professional they feel the most comfortable with. “Getting help is one of the hardest decisions to make,” said Gonzalo Bacigalupe, EdD, MPH, a psychologist and professor of counseling and school psychology at the University of Massachusetts Boston. “I tell patients, ‘Give me three sessions and if your gut says I’m not going to be helpful then don’t continue to see me.'”
Finding a mental-health professional with whom they connected posed a significant challenge for many of the patients involved in the panels. Liza Bernstein, a Medicine X advisor and three-time cancer survivor, has had several therapists during her lifetime. One of the more positive experiences came while she was receiving treatment at a community hospital where she worked with a therapist who specialized in with cancer patients. “Develop a protocol for interviewing a therapist,” Bernstein advised. “It’s the most empowering thing you can do.”
Schutte and others plan to continue the conversation about how mental and physical health are intertwined during weekly Twitter chats on Tuesdays at 6:30 PM Pacific time. Follow #Medpsych to participate.
More news about Stanford Medicine X is available in the Medicine X category.
Previously: At Medicine X, four innovators talk teaching digital literacy and professionalism in medical school, What makes a good doctor – and can data help us find one? and Medicine X aims to “fill the gaps” in medical education
Photo by Stanford Medicine X