It’s estimated that approximately 71,000 Canadians are living with HIV. Thanks to better drug treatments, many people with HIV are now living longer and with a better quality of life.
HIV is often referred to as an “episodic disability”. That’s because periods of good health may be interrupted by periods of illness or disability. Often it is difficult to predict when these “episodes” of disability will occur or how long they will last.
These issues are not unique to HIV. Increasing numbers of Canadians are living with lifelong episodic disabilities. These include multiple sclerosis, lupus, arthritis, cancer, diabetes and mental health conditions, amongst others.
People with episodic disabilities face significant employment and income support issues. Recurring periods of ill health make it difficult to work, especially full-time. Most people with episodic disabilities must rely on health and disability benefits. And due to the strict definitions and policies that govern these benefit programs, many people are not able to participate in the workforce part-time or when their health allows.
Realize (formerly CWGHR) is a leader in research and advocacy in this field. Under realize’s leadership, the Episodic Disabilities Network was established to bring together a variety of disability communities to work on these shared issues.
Realize undertakes research to examine and address the range of complex barriers to inclusion that are faced by people living with episodic disabilities. realize has also developed a number of tools and resources related to living with an episodic disability, including the following:
Your link to living well with chronic conditions and disabilities
Health Gateway is an Ontario-focused, accessible web-based e-library, for people living with complex chronic illnesses and episodic disabilities and their caregivers that connects them to the resources that meet their needs, wherever they are in their care journey.
Funded in part from the Ontario Trillium Foundation, an agency of the Government of Ontario, and Sun Life Financial, Health Gateway is the result of collaboration between Bridgepoint Health and realize.
Episodic Disabilities Employment Network (EDEN)
The Episodic Disabilities Employment Network (EDEN) is a network of people living with episodic disabilities, including HIV from across Canada who are seeking supports to find solutions to employment challenges.
EDEN members are at different stages of their employment journey; some EDEN members are beginning to explore career options, some are actively job searching, others are currently employed and some are examining retirement options. The purpose of EDEN is to connect people living with episodic disabilities, including HIV, to find answers to tough employment-related questions and form a national support network on employment issues.
Regardless of where you are in your journey, there are others who can relate and help you get the support you need. Your personal experiences can also help support others. Visit the website today and get connected.