Patients with vasculitis and their families may find it helpful to talk to a counselor or therapist to sort out the variety of feelings that can come with a diagnosis. Some may have a hard time accepting the disease; others may feel anxiety, anger, fear, sadness or even guilt about being sick because of the stress it can put on all those affected. But when people like mental health expert Velma Mockett, PhD, are diagnosed themselves, who do they turn to? How do they manage and cope with a chronic illness?
Dr. Mockett can look at her situation from both a clinician and patient perspective. She’s been a practicing mental health consultant/specialist for 15 years, counseling patients with anxiety, depression, grief and loss with chronic illness, trauma and addiction. Dr. Mockett also helps companies implement mental health training in the workplace and has presented workshops on a variety of topics. She lives in Calgary, Alberta.
And she is a patient with vasculitis herself. During the nearly five years it took to get a vasculitis diagnosis, Dr. Mockett had multiple medical conditions at the same time. Her symptoms included rashes and bruises on her skin; fever, fatigue and mouth pain. “Nobody could figure out what was wrong,” she said. Her rheumatologist suspected her condition was autoimmune related. After multiple biopsies and visits with other specialists, Dr. Mockett was finally diagnosed with small blood vessel vasculitis in 2015. Treatment for her today includes 10 to 15 different medications, including prednisone and methotrexate, to combat her numerous conditions.
Following her diagnosis, Dr. Mockett felt bogged down with specialist appointments, managing medication/ treatment options, controlling her energy, and canceling or postponing other commitments. Combined with work responsibilities, she was too exhausted at the end of the day to think about anything else other than rest.
She wanted to understand the emotions she was feeling, and with the encouragement of a social worker, she began journaling her experience. “Writing gave me the liberty to explore both from the outside and inside when I found it hard to express what I was thinking and feeling,” she said.
Dr. Mockett titled her journal, “Project R: A Loss and Grief Journal for Individuals with Auto-Immune Disease/Chronic Illness.” The R means reset—a reset of her life and her expectations. “But it can also mean renewal, rebirth, revival, re-engage or renew,” she added. “Loss and grief are normal parts of an illness journey that touch all of us who have been impacted by autoimmune/chronic illness,” she said. Dr. Mockett defines her loss as a diminishing of her health, decrease in activities, reduction in capabilities and quality of life.
Dr. Mockett has created a workbook that invites patients to reflect on where they are in their illness journey and express how they’re feeling with questions such as: Are you having trouble accepting the disease? Are you confused, angry and/or fearful about being ill? Do you want your old life back? Also included is an overview of loss, grief and mourning, common thinking patterns, how to reflect on behaviors, and more. Dr. Mockett hopes that talking about loss and grief will move diseases like vasculitis out of a medical context only and into psychological, spiritual, and social realms—with the possibility for greater meaning and hope.
“The goal isn’t only to listen to your body and mind, or to learn to accept losses and limitations, but also to transform the experience into something livable and bearable. It’s important to learn to accept the loss and integrate it into your life,” she said.
Calgary Vasculitis Association
Dr. Mockett has been working with leading rheumatologist, Dr. Aurore Fifi-Mah, in Calgary to establish the Calgary Vasculitis Association, which provides education and support for people affected by vasculitis, while promoting awareness of the disease. The hope is to collaborate with experts to provide clear, easy-to-use information/resources to members about vasculitis, tap into the mental health aspects of the disease, and offer opportunities for participation in research. Meetings are slated to begin in early 2020.
To obtain a copy of “Project R: A Loss and Grief Journal for Individuals with Auto-Immune Disease/ Chronic Illness,” email Dr. Mockett at: [email protected].
Author: Nina Silberstein. This article originally appeared in the Jan/Feb 2020 VF newsletter.