On Monday evening I attended the first-ever Self-Care Movement Summit in Toronto, Canada. We arrived at the Mars building, a downtown hub of innovative tech and entrepreneurial companies, to register and enjoy catered refreshments, before taking our seats in the auditorium. The audience, of around 250 people, represented the diversity of the people who live with chronic illness – young and old, with visible and invisible chronic conditions. We were there to listen to a series of panelists and speakers talk about their personal or professional experiences using self-care strategies to meet the everyday challenges of life with chronic illness. As these informative and engaging speakers discussed the multifaceted aspects of this topic, I came to a new realization about the meaning of self–care. Self-care is both a set of practical strategies and a mindset, a particular way of understanding and relating to the activities of everyday life.
The core of the self-care mindset that emerged throughout the evening was acceptance of life with chronic illness. As Margaret Trudeau, the keynote speaker, summed up – coming to the realization that “this is the hand you’ve been dealt and the hand you have to play”. But finding acceptance is a long process. Margaret Trudeau shared her health journey living with bipolar disorder and how she experienced the five stages of grief after her diagnosis – more than once. She said that, in her experience, the first step towards accepting life with chronic illness is forgiving yourself. Your illness is not your fault. During the patient panel, Kirstie Shultz discussed self-care as being kind to yourself, every day. In her presentation on mindfulness practice, Dr. Lucinda Sykes talked about the importance of observing and learning from our daily experiences, without judging ourselves. Overall, humor was woven through many of the talks as a way to live positively with chronic illness. For example, John Bradley named his book on Crohn’s disease the Foul Bowel. Kristen Coppens described her eighth illness as a “chronic party”. These insights into the self-care mindset are about relating to ourselves in a new way as we address the daily challenges of life with chronic illness, in a compassionate, forgiving, non-judgmental, humorous way.
The second theme that emerged about self-care as a mindset was finding balance in the activities of everyday life. In the patient panel, Marinette Laureano talked about a holistic approach to her self-care practice, by balancing her faith, family, friends, and fun in her daily life. Kirstie Shultz described the zero-sum game of fatigue and chronic illness – working to find the balance between activity and rest. Kristen Coppens discussed the challenges of balancing work and illness. In his talk on this subject, John Bradley discussed achieving success against your own measures, rather than letting your goals be defined by the external world. He described his own experience working with chronic illness, and how he found balance by trying to “be the tortoise and not the hare” in achieving work goals. Balance as part of the self-care mindset is more of an intention rather than a constant state, a learning process of respecting the limitations of chronic illness while participating in the daily activities of life.
The third aspect of the self-care mindset is becoming an advocate in your community. Robert Hawke reminded us that, as patients, we are experts with our own wisdom about our health. Dr. Lucinda Sykes discussed mindfulness as a practice of developing insight about ourselves and cultivating the collective wisdom of people living with chronic illness. She said the summit was a celebration of human potential and our heritage of resiliency down the generations. Grace Soyo, of Self-Care Catalysts, explained that the voices of people living with chronic illness need to be heard and that we have the knowledge to driving change. Change like patient-centered care in the healthcare system, increasing research about chronic illness, and reducing stigma about living with chronic mental or physical illness. It can be hard to share our illness stories. Robert Hawke noted that we prefer to share our shiny selves with the world, rather than our difficulties and challenges. But when we do share our stories and everyday self-care strategies with each other, as Filomena Servidio-Italiano said, “The ordinary becomes extraordinary.” As part of the self-care mindset, advocacy is about self-empowerment, connection with the chronic illness community and society at large, and celebrating the greatness in ordinary accomplishments that we face every day.
Acceptance. Balance. Advocacy. Connection. These are all critical elements of self-care as a mindset and a way of relating to the ordinary activities of daily life with chronic illness. We can learn to pace our efforts, eat nutritiously, exercise more, to use practical self-care strategies. These are important wellness tools. But underneath, cultivating a self-care mindset is the key to improving our health and wellbeing as we live with chronic illness.
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