On March 19, the Amyloidosis Research Consortium (ARC) hosted a webinar to discuss the emotional impacts of transthyretin amyloid cardiomyopathy (ATTR-CM) and other forms of amyloidosis.
The talk was led by Meghan Beier, PhD, a psychologist at the Rowan Center for Behavioral Medicine. Her work focuses on mental health issues faced by individuals with chronic illnesses and disabilities.
Up to half of individuals with amyloidosis are impacted by depression, anxiety or both, though there is a lack of research on this topic, Beier said. In her webinar, she presented a three-tier system for understanding the relationship between physical and mental health.
A primary interaction is characterized by emotional symptoms that are directly caused by the underlying medical condition. For example, hypothyroidism, which occurs in some patients with amyloidosis, can cause anxiety.
Read more about resources for ATTR-CM
In a secondary interaction, emotional symptoms are caused by the physical symptoms of the disease or the treatments for the disease. Individuals with ATTR-CM might experience stress and anxiety as a result of an irregular heartbeat or shortness of breath, for instance.
Lastly, tertiary interactions are described by changes in mental health due to challenges of living with a disease. These may include feelings of uncertainty or frustration.
Beier pointed out that all three tiers are valid experiences that should be considered during mental health evaluation and treatment.
In terms of coping strategies, Beier highlighted two key skills that are essential to develop: Identifying your core values and committing to adaptation in spite of feelings of grief. She introduced the field of dialectics, explaining that you can simultaneously experience these negative feelings, accept them and seek to find alternatives to the activities you once enjoyed.
“Acceptance means you’re acknowledging the present reality and you’re continuing to commit to being a part of your everyday life,” she emphasized. “It’s not just being okay with [your diagnosis] or giving in.”
In response to a question about feelings of anger, Beier explained how we often use anger as an “armor” that protects us from more vulnerable emotions such as discomfort and grief. She suggests taking the time to become more in tune with your body, noticing the physical cues of frustration or anger and addressing them before they become too intense.
Overall, the talk underscored the importance of being willing to explore alternative strategies for enjoying life and coping with the loss of certain abilities. Although it is easier said than done, she conceded, a combination of acceptance and willingness is key to managing the challenging mental health symptoms of an ATTR-CM diagnosis.
Sign up here to get the latest news, perspectives, and information about ATTR-CM sent directly to your inbox. Registration is free and only takes a minute.
