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The Stigma within
Posted March 5, 2019 from Cameroon
Stigma eats deep within the soul.
HIV patients especially in Sub-Saharan Africa go through various forms of stigma. Two main types of stigma have been identified, internal and external stigma. External stigmas work through people avoiding contact and not even doing business with HIV positive persons, where as Internal stigma which, can also be termed felt or imaginary stigma is the shame associated with HIV/AIDS and their fear of being discriminated against.
While carrying out my research in Kumba, South West region of Cameroon, after using the PLWHA stigma index, the study participants were found to be highly stigmatized with a stigma score of 59.1. Most, 39.5%, of them were internally stigmatized as opposed to just 17.9% who experienced external stigma.
Often times, we are tempted to think HIV patients are more afraid of what people will think about them when they know they have the disease but my experience with a girl "x" whose name is withheld for confidentiality purpose made me have a different perception.
X came in to pick up her monthly HIV drugs when I approached her with my questionnaire trying to convince her to spare me 5 minutes of her time. She looked very beautiful and young and my head kept wondering what could have gone wrong. Why was she here? As I approached her, she gave me a warm, welcoming and assuring smile that she will attend to me after picking up her drugs. I patiently waited for her to do that. When she was done, she came to the office where I was designated to and told me to sit next to her and immediately I rushed to her side with my questionnaire in hand. She smiled at me and started filling in the form. She was very literate from all indications and she filled the form with little or no assistance. After completing the form, she looked at me and asked how old are you? With a confusing smile, I told her my age and she smiled. She whispered I'm just a year older than you but dead. This frightened me and the expression on my face was clear. Why will she say that? Immediately I asked her if she was alright, at first she resisted but I knew deep down she wasn't okay. I said to myself, probably people avoid her because she's positive. I almost concluded with my thoughts when she asked me if I had plans of getting married. I laughed for a short while and told her not yet. Her countenance dropped and the smile on her sweet face faded away. I then walked over to the door, closed it and took her hand assuring her she can confide in me. She told me she didn't care about what others think but she can't live with the thought of being positive. I quickly glanced at a question in my form and discovered she has been positive for 4 years. Why then did she feel like giving up, this is more common with new cases. X told me she hasn't accepted she is positive and still can't live with the thought of it. She feels like committing suicide almost all the time but the fear of death overwhelms her. She acts normal in public but depression is eating her deep within. The past years have been a living hell for her. She is afraid of disclosing her status. The fear of loosing her friends, the accusing eyes of her parents, the prejudice from the community and the fear of dying single were all racing through her thoughts day & night. X told me she has a guy out of the country whom she loves and has promised her marriage, he was to visit December, what will she say? How will she explain her case? Will the guy cede to sero-discordancy? X was confused and cried. She didn't know when she finally let down her guard and said, nurse as she called me (though am a public health personnel not a nurse) I don't want to be rejected, I don't want to die single, I don't want to be an outcast. Immediately it dawned on me, that many suicide cases of HIV persons are not necessarily due to external stigma but more of internal. The external stigma further fuels the thoughts of suicide.
After speaking with X, I assured her it wasn't over yet and life has more to offer. There are many of her kind surviving, happily married and successful in their life. I then referred her to the head of the HIV UNIT who drilled her further on the importance of disclosure and on sero discordant couples.
There are a lot of scars and terms associated with HIV persons. In most of sub Saharan Africa in particular, HIV is seen as punishment from the "gods" for one's promiscuous lifestyle.
X opened my eyes to the fears and mask most of them hide.
Let's shun stigma in all forms and lend a helping hand.