On May 10th, Suffering the Silence held an event that was the first of its kind for the newly incorporated 501(c)(3) organization. What made it unique? Entitled Caring for the Family: Healthy Dynamics & Chronic Illness, the Boston based event, part of STS’s ongoing, cross country speaker series, was the first time the focus of a workshop extended beyond the experience of the patient to examine and discuss the impact of chronic illness on the family as a whole.
As Allie Cashel, co-founder and president of STS pointed out at the beginning of the evening, there has been a hole in our programming, a piece of the puzzle we were missing. While focusing on the patients and chronic illness warriors themselves is important, there is another set of individuals that is equally affected by the emergence of chronic illness: the family.
“My parents live in Boston, and at the peak of my struggle with neurological Lyme, my family was living just outside of Boston. When I thought about what theme it may be interesting to explore for an event in this city, the experience of my family as a whole felt incredibly potent here.”
“So often the conversation is focused on the patient (as it should be),” Allie added. “But we forget that there are so many other players involved in an illness experience...I wanted to bring this group of people together to discuss illness as it affects relationships and family dynamics. It's a conversation we aren't having enough, and I hoped that by having it, everyone who attended was able to learn a bit about each other's experiences- and maybe even heal.”
The group of individuals who congregated for this event represented a variety of chronic illnesses, and their connections to the chronic illness community were just as diverse. From patients to caregivers, doctors to elected representatives, each had their own reasons for feeling drawn to this particular event.
One attendee, Erin Ellwanger, a public health student, has a deep connection to STS. She was excited to attend this event because, “my best friend is the cofounder of STS and I am so proud of her and Allie for creating such an important movement for the chronic illness population. Both of these girls are so brave for telling their stories and inspiring others living with chronic illness to tell theirs as well.”
After Allie started off the evening, attendees had the opportunity to hear from two speakers, each with their own link to chronic illness and their own expertise in the area of caregiving relationships.
The first speaker, Elaine Meyer, is a representative of the medical community. She is the co-founder and director of the Institute for Professionalism and Ethical Practice (IPEP) and Associate Professor of Psychology at Harvard Medical School. In her role as the director of the IPEP, Elaine’s work has been focused on patient and family perspectives as they relate to critical care illness. She also gave a TEDx talk in this vein, entitled On Being Present, Not Perfect, which drew on her professional and personal experiences to demonstrate the real gaps in healthcare communication and how to close them.
Elaine touched on these various experiences when addressing the individuals at this event too. “The main point that I wished to share was the importance of the patient- clinician relationship that can evolve over time,” she said. As a psychologist, she wanted to share from her perspective, “the value of being known and sharing one's story with the clinician in order to deepen the relationship.”
The main point she wanted attendees to take away? “Listening is the heart of the relationship whether as a family member or clinician hoping to help.”
Shirley Riga was the second speaker that evening, representing the non-medical caregivers of chronic illness. The author of a self-help memoir entitled, Tools for the Exceptional Parent of a Chronically Ill Child, and the facilitator of a caregivers’ support group, Shirley drew on her personal experience as a caregiver to her daughter, sharing the life lessons she learned along the way.
“I hold a deep passion for sharing my experiences as a mother of a chronically-ill daughter, as well as a woman growing from my life experiences, “ she said. “Communicating my struggles and my triumphs while in challenging times, inspires others to rise to their challenges as well.”
Her talk focused on the learned strength and resilience of chronic illness caregivers. “[I also wanted share how] chronic sorrow helped me understand the never-ending angst of feeling helpless as a mother and at the same time helped me regroup to be able to support both my daughters,” she added. Shirley ended her talk by demonstrating stress-relieving tools she’s discovered that have helped her with the day-to-day pain of being a caregiver.
The workshop ended in an interactive discussion between attendees and speakers, sharing personal perspectives, tools, and the important information to come out of the event. This was a favorite part for many participants, including Erin who said, “I came thinking I would just be a spectator, but was really happy about how interactive it was and that I felt included. [It] was so much more than I expected.”
When asked what she took away from the workshop, Erin shared, “A big piece of information I took away is the role of the caretaker...It’s almost like their entire lives are focused on their loved one, which is so selfless and wonderful of them.”
“Family and friends may have different roles that they play in a person’s life with a chronic illness,” she added. “As a friend of someone with chronic illness, I try to be a good listener and not always try to offer a solution, but rather be a sounding board when times get tough.”
But it wasn’t just attendees who learned something new from this event. Even our speakers discovered new information to take forward with them. Shirley was surprised at the number of young chronically-ill people at the event. “I was reminded how important it is for families to work together helping each other through the experience. Communication is key and sometimes we need reminders of how to communicate. This event helped so much in that regard.”
For those families who are impacted by chronic illness and are struggling to maintain a positive family dynamic, our speakers have advice for you too. “Listen well and deeply,” Elaine shared. “Do not feel that you have to "fix things.” Be present and do not feel that you need to be perfect. There is great power in this.”
For Shirley, the takeaway is this. “Chronic illness affects the whole family, not just the member who is chronically-ill.The patient, the caregiver(s) and the sibling(s) all have a key role.”
But perhaps more importantly? “Those who have lived through this experience have valuable information. Therefore, like a ripple effect, learning from each other helps this challenging situation feel a bit more tenable.”