Episodic disabilities
About episodic disabilities
The landscape of HIV has changed a great deal in the past 20 years. Many people are now living longer and with a better quality of life.
But for the person with HIV, the disease and its treatment side effects often interfere with living a meaningful, active life. HIV is often considered an “episodic” disability. An episodic disability is marked by unpredictable and fluctuating periods of wellness and disability. Multiple sclerosis, lupus, some forms of mental illness, arthritis, diabetes and fibromyalgia are other episodic disabilities.
The language of episodic disability is still new. Government benefits programs, insurance providers and the medical community tend to use definitions that are more relevant to permanent disabilities. This can create barriers to accessing programs and benefits for people with HIV.
Living with an episodic disability creates many challenges:
- Personal challenges: People living with HIV often struggle with its unpredictability. Goals are difficult to set. Recurring ill health makes it difficult to work. There is stigma and discrimination. Self esteem is affected. Depression is common.
- Care, treatment and support: The health care system and service providers are often not well equipped to meet the needs of people with lifelong episodic disabilities. Services are not fully coordinated. Accessing appropriate rehabilitation services may be difficult.
- Employment: Remaining in the workforce is difficult due to recurring, unpredictable periods of ill health. Part-time work and flextime accommodations may not be available.
- Income support and security: Without work, most people with episodic disabilities must rely on health and disability benefits. There are barriers to accessing these benefits and many barriers to re-entering the workforce.
