Long-term survivors

The cornerstone of this publication is our belief in the empowerment of people living with HIV. Research shows that how we feel about the virus and the degree of control we have about the way we live, are major factors in determining the quality of our life and its length.

Research has been done on the factors that seem to influence someone's ability to live with the disease. These studies have produced the following list of characteristics of long term survivors:

- Accepting the diagnosis but refusing to see it as a death sentence.
- Looking towards doctors as partners in health rather than giving over full authority and becoming a passive patient.
- Being committed to a fulfilling life and to doing something about unmet goals and unfinished business.
- Having a sense of personal responsibility and influence on life - acknowledging an ability to take care of self following the diagnosis.
- Having a sense of meaning and purpose in life.
- A spiritual sense - a feeling that something exists beyond the self.
- Being given helpful information from supportive persons with HIV disease soon after diagnosis.
- Being assertive and having the ability to say 'No'.
- Having a sense of humour.
- Having a personal way of coping actively and the belief that this has beneficial health effects.
- Accepting sexuality or other possibly stigmatising labels and refusing to perceive HIV as a 'punishment'.
- Being prepared to alter lifestyle to accommodate illness in a way that is positive: taking care of self positively.
- Having an altruistic involvement with people with HIV disease.
- Being able to communicate openly on subjects including HIV.
- Being able to withdraw from social environments when necessary in order to nurture personal needs.
- Being sensitive to the body and its needs.
- Being physically fit within our individual capacity.
- Taking active 'responsibility' to enjoy life.

These characteristics do not guarantee long term survival and you do not need to have everything on this list. However, there is good evidence that if a number of them are present, they contribute to survival and certainly improve quality of life. They may be useful when used as a checklist to see which areas of your life could use some attention.