Do chronically ill patients need to rely on each other to solve their problems in the face of a healthcare crisis and difficulty accessing quality care?
Journey2Joyous has released a potentially controversial article "Crowdsourcing Your Healthcare", bringing some pain to the medical community, as the article may challenge traditional doctors, pain management services, alternative treatment and physiotherapy care providers.
The article outlines the struggle chronic illness sufferers face today resulting in the need to leverage community over traditional care. Insights are shared on how to self-advocate to learn about diagnosis and treatment for invisible illness like Ehlers Danlos Syndrome (EDS). In a somewhat atypical manner, a certain element of the article is set to spark a movement among the trained medical community to make more education on rare chronic diseases.
Below is a portion of the piece, which details the controversy brewing in healthcare:
While many health care professionals battle burnout just trying to stay healthy at work, those who are chronically ill are turning elsewhere to find answers amidst the pandemic. Healthcare in 2022 will continue to struggle as many nurses, doctors and clinicians choose to leave the workforce, not only a part of the Great Resignation, but also from sheer exhaustion, or personal choices following recent U.S. Supreme Court ruling upholding vaccination requirements for healthcare workers. They want to have a choice, and most importantly they deserve the right to be safe at work.
On the other hand, many who have been struggling with chronic illness, many long before COVID, are getting more and more frustrated by the lack of ‘care’ in healthcare today. Being bumped out by people who are not taking proper care of themselves is having a negative impact. The same access to providers and resources is reduced as pandemic chaos overburdens the system.
A spokesperson for Journey2Joyous, Christie Cox, says "The aim of our story is first and foremost to raise awareness of the pressures the chronically ill community faces as they are left out of healthcare. It is critical that we stay dedicated to our true voice speaking up for patients.
Although our ideas of "Crowdsourcing Healthcare" might unsettle doctors, pain management services, alternative treatment and physiotherapy care providers, our duty is to the community of chronic illness. We believe it's more important to empower patients with tools to optimize self-care and enable self-management, than to appeal to the medical system, which is notoriously difficult to navigate for many patients with complex invisible chronic illnesses."
The article suggests that the medical community currently does not have the up-to-date training, skills or know-how to treat invisible chronic illnesses like hypermobile Ehlers Danlos Syndrome (EDS) that were previously thought of as rare, but are becoming more recognized as simply 'rarely diagnosed.'
Journey2Joyous aims for their services to better enable people to improve their quality of life with wellness tools and optimal living with chronic disease, like their founder Christie Cox who suffers from EDS. Any publicity goals are to amplify funding and research into scientific advances and re-emphasize the need for additional resources committed to rare disease diagnosis and treatment options.
Learn more about how to get involved this February with Rare Disease Week from the non-profit, EveryLife Foundation. Go to https://everylifefoundation.org/rare-advocates/rare-disease-week/
Journey2Joyous's complete article can be found at https://www.journey2joyous.com/post/crowdsource-your-healthcare
