HIV is increasingly defined as a lifelong, manageable illness which may result in “episodic disability”, especially for people who have access to medication.
It is episodic 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.
It is a disability because the disease interferes with meaningful, active living. Individuals may experience:*
- Impairments (physical or mental problems) e.g., pain, fatigue, diarrhea, numbness or tingling, reduced sex drive (libido), memory issues
- Activity limitations e.g., walking, climbing stairs, carrying groceries or taking a bath, or
- Participation restrictions e.g., difficulty working, participating in social activities or relationships.
A 2004 British Columbia study found that:
- over 90 per cent of people living with HIV experience one or more impairments
- 80 per cent experience one or more activity limitation, and
- over 90 per cent experience one or more participation restrictions.
In some cases, the disability may have a limited impact. In other situations, it is severe and extremely debilitating. Living with an episodic illness or disability creates other challenges, as well. Things change from day to day and week to week. Sometimes a person is well, sometimes they are not. People with HIV sometimes describe life as a “roller-coaster”. Making plans and setting goals is difficult – even impossible. Anxiety and depression are common.
* These categories reflect the World Health Organization’s definition of disability.
For more information on the World Health Organization’s definition of disability and the International Classification of Functioning, Disability and Health (ICF), see Towards a Common Language for Functioning, Disability and Health.