“The diagnosis—a grief that needs to be taken care of”

Being diagnosed with a rheumatic disease can mean so much more than the disease itself. It can evoke a spectrum of thoughts and feelings, as many Elsa users have experienced. And while health care personnel tend to focus on the purely medical, there is a risk that emotions are being overlooked.

The topic was discussed at the American College of Rheumatology's (ACR) annual meeting in San Diego late last year. Both experts in mental health and patients agreed that within rheumatology, a better understanding of the grief that can be experienced at the time of diagnosis and which can then be recalled again, for example in connection with a relapse, is needed.

A response to loss

Yes, it can really be a matter of grief, says Courtney Wells, PhD, MPH, LGSW, assistant professor in social work at the University of Wisconsin. It is about the emotional, cognitive, functional and behavioral response to a loss – the loss of bodily function, or perhaps the loss of how you imagined life would be.

Grief should be separated from depression, not least because the two conditions need to be treated in different ways. While grief is an emotional pain that can be related to a loss, depression is more about listlessness and apathy.

Different types of grief

Grief comes in different forms. There is a kind of anticipatory grief that can emerge when we expect a loss to occur, and a prolonged grief that remains unresolved and has become a diagnosis in itself.

The hope, however, is that patients reach what is usually called integrated grief, which means the grief feels manageable, even if it remains, Wells explained at the meeting.

The responsibility of the HCPs

Healthcare professionals can help their patients by validating their feelings, and being sensitive to both what people say and what they don't say, says Rebecca Gillett, MS, OTR/L, occupational therapist and diagnosed with RA. They should also recommend that the patient receive psychological support and come into contact with a network of people with similar experiences.

Creating a trusting relationship with the patient can actually make a difference to how the patient feels about their illness in the end, states Wells.

Source:

The article is based on The Rheumatologist - The emotional toll of rheumatic disease.