Patient Grief Deserves More Attention
SAN DIEGO—During a session at ACR Convergence 2023, mental health professionals and patients agreed that the rheumatology field needs a greater appreciation of the grief patients feel at the time of diagnosis and throughout their lives. Such an understanding from providers may ensure patients get the help they need.
A personal take: Rebecca Gillett, MS, OTR/L, an occupational therapist at Insight Wellness in Centennial, Colo., recalled the time when, inexplicably, she had pain in her right wrist so extreme that it took her an hour to get ready for work. When she got into her car, which was a stick shift, she realized she could not drive it.
She called her mother and broke down. “Everything hurts,” she said.
Mrs. Gillett was diagnosed with rheumatoid arthritis (RA) a couple of months later. But she also went through two years of anger and denial after diagnosis. The emotional toll didn’t stop there—each time her condition worsened, she grieved.
“You have to help your patients build resilience,” Mrs. Gillett said.
A Starting Place
Healthcare professionals can help by validating their patients’ emotions, listening to both what a patient is saying and not saying, asking how they can help and following up with patients via email or phone or during their next visit. According to Mrs. Gillett, providers can suggest patients seek mental health support, get involved in a community of people who’ve been down the same path or begin physical and occupational therapy. Patients may also benefit from meditation, prayer and journaling.
“Grief can mean change. It’s not linear. It doesn’t go away. It’s always an underlying thing that you feel. But we adapt, and we find resilience in our life,” Mrs. Gillett said.
What Is Grief?
According to Courtney Wells, PhD, MPH, LGSW, assistant professor in social work at the University of Wisconsin, River Falls, who has had RA since childhood, grief is pervasive among people with RA—not because it involves the death of someone, but rather because it is the emotional, cognitive, functional and behavioral response to any kind of loss.
“It can be the death of your functioning. It can be the death of what you thought your life was going to be like or your childhood,” she said.
Also, grief comes in many forms—not just the grief we experience when someone dies, Dr. Wells noted. Anticipatory grief occurs when we are expecting a loss, and prolonged grief—an unresolved form of grief formally known as complicated grief—has become a diagnosis of its own. The hope is that patients grow into integrated grief, which is a form of grief that doesn’t go away but becomes manageable, even if there are times when patients feel overwhelmed, she said.