Adhering to ART is easier when you have support. To find this support you can:
- Disclose your status to somebody you trust who will encourage you to adhere to your treatment;
- Talk to other people who are on ART so that you feel less alone;
- Join a support group at the clinic or in the community.
- If you have been on ART for two years and are stable, you can join an adherence club which meets every two months. Talk to your health care worker to find out more about adherence club.
Adherence might be more challenging if you are an adolescent, a pregnant woman or the parent of a child taking ARVs; and you may benefit from a support group of people who are in the same position as you.
Pregnant women may find it helpful to get together with other pregnant women to discuss all the changes they are going through and any fears they might have about the health of their babies. This support will be important after childbirth, as mothers may be overwhelmed with additional responsibility and default on taking their ART.
Adolescents who are already dealing with many physical and emotional changes often stop taking their ARVs. Being in a support group under the guidance of an older mentor may help them adhere to their treatment.
Parents or caregivers may find it lonely being the only person responsible for giving a child ART. Talking to other parents in the same position might make it less stressful and they can share strategies on how they talk to their children and how they cope with the situation.
Supporting a friend
If somebody has disclosed their status to you, they trust you. Let them know that you appreciate their confidence in you and that you do not think any less of them.
- Be kind and sensitive;
- Talk openly, but take the lead from them about how much they want to share with you;
- Learn about HIV so that you can understand their concerns;
- Show them that you understand and are not afraid of their status;
- If they are not on ART, you should encourage them to start soon;
- Ask them how you can help them to adhere their treatment and stay healthy;
- Give them practical help when they are sick;
- Reassure them that with treatment HIV can be managed and is not a death sentence;
- Recognise the difficulties they face but don't define them by their illness;
- Let them know that you believe that being HIV positive does not mean that you are not still the same person you were before you tested;
- If you were friends before you heard about their status, do the things you did together before;
- Reassure them when they feel down and help them to empower themselves;
- Respect their trust and do not disclose their status unless they ask you to;
- If you are also HIV positive, you can share experiences and provide each other with support.
Supporting Young People
It is important that young people feel able to talk about their HIV status and what it means, so that they can access the care and support that they need.
"I had a lack of information and a lot of stigma around HIV... and I had a very strict father. I couldn't tell him my status because of the way he was so strict. I actually thought if I told him my status he would chase me away from home. And I was still a teenager and I didn't tell anyone what was happening. Much later, when I my father took me to the doctor, my dad cried then and there. When we got home he called my mother and sister and told them my status. He came with a lot of vegetables and pumpkins, for a healthy life." Annah Mathekga.
It is important that young people take care of their health, and this is particularly important for those living with HIV. Taking care of their health means taking ARVs for the rest of their lives as soon as they are diagnosed with HIV, treating any opportunistic infections and making healthy choices about diet and lifestyle.
Dealing with stigma, prejudice and discrimination
Self-stigma is when people who are being stigmatise believe the that they are bad or negative. This can happen to people who are living with HIV.
On a personal level
A person who is being stigmatised can: Join a support group to avoid feeling isolated. Speak to a counsellor to help them realise that this is the other person's problem not theirs. Tell people who are discriminating against them how this makes them feel.
At a community level
Stigma is often born out of fear or lack of knowledge. For this reason HIV activists believe that the way to challenge stigma is to:
Create more public awareness through education. Openly disclose their status and share experiences to show that people living with HIV are just like everyone else.
The rights of people living with HIV
- The Bill of Rights in the South African Constitution protects all people. This means that people living with HIV have the same rights as anybody else.
- PLHIV have a right to privacy. No one can give out information about a person's HIV status unless they agree.
- Routine testing of a person for HIV for the purpose of protecting a healthcare worker from possible HIV infection isn't allowed.
- PLHIV have a right to medical treatment and care. Including reproductive healthcare.
- Women living with HIV have a right to make choices about their pregnancy. A woman cannot be forced to terminate her pregnancy because she is living with HIV.
- PLHIV have a right to make decisions that affect their marriage and having children. Information and counselling around these decisions should be provided.
- PLHIV have a right to choose what kind of work they want to do. They cannot be fired, retrenched or refused a job simply because they are HIV-positive. No employer can require that a job applicant have an HIV test before they are employed or demand to know their status.
Children living with HIV have a right to attend any school.
- PLHIV have the same rights to housing, food, social security, medical assistance and welfare as all other members of our society.
- Any person living with HIV has the right to live their lives with respect, dignity and freedom from discrimination and shame.