Movimiento insurreccional o de otra índole

Personal factors identified as barriers to activity performance and participation in society included internalised stigma and age.

Internalized stigma

Many of the participants demonstrated that they had internalised the stigma relating to HIV.

They had low self-esteem and they lacked confidence in themselves. They described how they lived with feelings of being hurt, and of regret and shame, and with the thought of being judged, stigmatised or discriminated against by (for example) being fired, chased away and even abandoned by other people in their community once they were discovered to be living with HIV. This made them afraid and had a big impact on their social participation. Some even refused to disclose their status to their families.

5A: (looking sad), Hum!²⁷ For me, no one in my family knows that I am infected with HIV... (Urban, female, 30 years old, 3 years on antiretroviral treatment)

Feelings of being hurt, feelings of regret and shame, guilt and remorse about HIV

Many participants expressed feelings of being hurt, and feelings of regret and shame once they were discovered to be living with HIV; this led them to fear disclosure. At rural hospital the 21 year old man who was an orphan expressed his worries about being hurt by negative comments which might be made by his peers or teachers at school – once they discovered he was HIV positive:

2B: I am a student. When my colleagues and student supervisor notice that I cough too much, they ask me about my status, but I do not disclose because I think their comments cannot be good. (Rural, male, 21years old, 3 years on antiretroviral treatment)

27 Expression of revolt

171 One 45 year old woman who had lost her husband and her only child due to HIV, regretted

what had happened and was ashamed of her status. She indicated how difficult it was to disclose her status:

3A (Looking nervous): Hum!²⁸ It is hard to say it! [I have HIV] (Urban, female, 45 years old, 9 years on antiretroviral treatment)

One young woman of 23 years indicated that immediately after being tested HIV-positive, she had not only felt terrified but also guilty, ashamed and wounded. At that time, when she thought about how she was infected through sexual intercourse it made her feel nauseous and she wanted to vomit when she looked at any man. Consequently, she had lost any desire for sexual intercourse. However, she did subsequently get married suggesting improvement overtime

8A: Hum!²⁹ After being infected with HIV, I was about to vomit just after looking at any man (Urban, female, 23 years old, 4 years on antiretroviral treament)

Negative thoughts and imaginings

Participants expressed their thoughts and how they imagined being stigmatized, abandoned, chased and fired from work once they were discovered to be living with HIV.

Fear of being stigmatised

Many participants thought about how they would be stigmatised by others in the community once they were discovered to be living with HIV; they therefore chose to keep quiet about their status:

5A: We don’t disclose because we are afraid of being stigmatized! (Urban, female, 30 years old, 3 years on antiretroviral treatment)

6A: To tell other people that you are HIV positive is very difficult because they stigmatise you! (Urban, male, 28 years old, 3 years on antiretroviral treatment)

28 Expression of depression

29 Expression of displeasure

172 Fear of being judged

Many of the participants were afraid of being judged once other people discovered they were HIV positive. This fear of being judged made them reluctant to disclose their HIV status. One participant expressed how people judged them by their appearance and explained how this affected their feelings:

6A: Hum!³⁰ People sometimes suspect you before even you have undergone HIV testing! You know when you hear people judging your appearance, it hurts you more and then it becomes difficult to disclose. (Urban, male, 28 years old, 3 years on antiretroviral treatment)

Fear of being chased away

Participants imagined being mocked and chased away by others in their community when these people found out about their HIV status. They explained that they felt comfortable and safe to be with others when these people did not know they were HIV-positive.

8A: Hum!³¹ We manage to visit them because they do not know our problem. Once they are informed about it we can be chased away, stigmatized, or said to be useless. Truly, that is the problem we have. Not knowing our status makes them socialize with us;

otherwise we cannot feel free with them! (Urban, female, 23 years old, 4 years on antiretroviral treatment)

30 Expression of depression and regret

31 Expression of depression and disappointment

173 Fear of being dismissed from work

One male participant expressed fear of being fired from work once his employer discovered his HIV status, although he believed it was a good thing to disclose his status. As a result, he was uncertain whether to disclose or not:

6A: When you do a monthly waged job, you are on antiretroviral treatment, and you have to go to a clinic every month, you have to tell your boss the truth to get

permission. Sometimes, he/she may decide to suspend you because he/she knows your status. (Urban, male, 28 years old, 3 years on antiretroviral treatment)

Participants in both FGDs expressed their thoughts and worries about the spread of the information from one person to another in their communities once their HIV status was disclosed.

7B: We are afraid of people who may spread the information everywhere (Rural, female, 45 years old, 3 years on antiretroviral treatment)

Age

One participant at the urban hospital who was older than all others (64 years old) explained that apart from paraesthesia she did not normally have many health problems. She was confused whether she should attribute paraesthesia or any other health problem she might encounter to HIV or to her age.

4A: As for me I have a lot of paraesthesia when I stretch myself in the morning.

(Smiling) but perhaps this is due to old age! (Urban, female, 66 years old, 7 years on antiretroviral treatment)

However, age did not deter this same woman from saying she would like sex if she found someone who was interested in her.

4A: (smiling) If someone proposes me to do it and caresses me, I may accept! (Urban, female, 66 years old, 7 years on antiretroviral treatmennt)

174 As mentioned in (sexual activity section) much younger participant in the group, FGD

A, a 28 years old single man, found his age and parallel normal sexual desires were difficult to meet because of the HIV and his reduced energy levels.

4.5.5 Theme 4: Social relationship or community environmental factors that