Medicine X explores the relationship between mental and physical health: “I don’t usually talk about this”
on September 8th, 2014 No Comments
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.”