Greatness in the Ordinary: The Self-Care Movement

Patient Expert

“There is greatness in the ordinary. People who live with illness have many small victories every day and there is greatness in that.” These wise words were said by Grace Soyao, the founder and CEO of Self-Care Catalysts, the organization behind SelfCareMVMT.

Self-Care Catalysts is an organization committed to enabling people living with health conditions to engage in self-care and self-management. They do this through their app, the Health Storylines tool, which has been developed in different versions for a variety of conditions.

They also organized the Self-Care Movement Summit this summer in Toronto and I was privileged to attend.

The Self-Care Movement Summit

Margaret Trudeau, mother of Canadian Prime Minister Justin Trudeau, gave the keynote speech at the Summit. She spoke about her own journey with bipolar disorder, which began when her then-husband Pierre Elliott Trudeau was the prime minister of Canada and she was the mother of small children. Her speech was infused with humor and heart.

“Margaret Trudeau was just so funny, so endearing while talking about some of the most difficult things people can go through, and it just warms my heart,” said Kirsten Schultz. Kirsten is the creator of Chronic Sex, a community organization that’s a safe place to discuss issues related to chronic illness and self-care, intimacy, and sexuality. She also was a panelist at the Summit, discussing self-care stories.

“It was awe-inspiring to walk into that room and see how many people were there,” she said.

I had a similar reaction, feeling overwhelmed at being surrounded by so many of my peers. Approximately 400 people attended the Summit, and the event was so popular that the organizers had to actually turn away some individuals.

“One of the things that was reinforced for me was how common our experiences are,” Kirsten continued. “Different backgrounds and experiences, but at the end of the day everybody feels alone, not worthy of what they’re doing and receiving. How do we as a community attack that — there were some great messages presented.”

Empower the patient

“Patients were never trained to become patients,” said Grace Soyao as she told me about the background of Self-Care Catalyst. “increasingly, patients are being asked to continue their care at home. When they go home, they are no longer just patients, they become researchers, mentors for other patients, caregivers for family members. We built Self-Care Catalysts to empower the patient.” The organization does this through presenting speakers, templates, and resources so individuals can bring self-care to smaller communities, and the Health Storylines apps (scroll down when you access that link to find the many app offerings).

“We have the app to help people understand their own health journey and make it easier for them to communicate their experiences in between visits to the doctor,” said Elise Kayletz, manager of Strategic Partnerships & Stakeholder Relations with Self-Care Catalysts. She explained that there are “20 apps focusing on different conditions” and that the organization works with nonprofit foundations when building the apps.

“Working with our partners isn’t just about making an app, it’s about supporting their campaigns and backing them up when necessary.”

For instance, Positive Living Storylines, an app for people living with HIV, was launched on December 1, 2016, World AIDS Day. Self-Care Catalysts has also done a lot of work on an app for people living with schizophrenia.

The winner of their self-care design challenge was Kristy Speaks, who lives with schizophrenia. Her idea was a positive affirmations tool. Elise said the tool will be featured in the app.

“We flew her and her partner to Toronto from Oklahoma, and she worked with our entire team to build the idea and what it’s going to look like,” Elise said.

On December 8, 2016, the organization will support Schizophrenia and Related Disorders Alliance of America (SARDAA) in their Hearing Voices of Support initiative.

“This is videos of individuals with schizophrenia talking about their own personal experiences. They will be airing every two minutes for 10 seconds each in Times Square on December 8. It’s going to be a huge presence,” Elise told me.

In 2017, Self-Care Catalysts will be focusing on the areas of schizophrenia, irritable bowel disorder, primary biliary cirrhosis, a rare autoimmune disorder of the liver, and will also be looking at expanding into arthritis.

Learn more on theSelf-Care Movement website. You can find the apps onHealth Storylines, Google Play, and the Apple Store.

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#ChronicSex: Creating a Safe Place to Talk about Sex and Chronic Illness

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Lene’s new book isChronic Christmas: Surviving the Holidays with a Chronic Illness. She’s also the author ofYour Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain,7 Facets: A Meditation on Pain, and the award-winning blogThe Seated View.