The writer of this blog post is Hivpoint´s Health Buddy 2023. The Health Buddies are Hivpoint´s advocates who spread knowledge about sexual health, including HIV and sexually transmitted infections, in migrant and refugee communities.
The name of the main character of the story has been changed at their own request.
Jennifer had just turned 24, she had gotten admission at the university to study for her dream career. She had moved from her parents’ home to the student’s hostel, she was feeling happy and enthusiastic about the future. During one of the student parties in the Uni she met David who was an older student in the same college but in a different faculty, they liked each other and had a lot of fun together. She was feeling at the top of the world!
They had already been in the relationship for a few months when Jennifer went for her routine check up. The doctor suggested that she should have different kinds of tests since she hadn´t done any since she had turned 18. Among the tests performed was HIV. She didn’t think much of it because in her mind HIV was a disease for other people, not people like her. She gave out the blood samples and went home.
The nurse had told her if they find something worth of investigating more, they will contact her. Just one hour after getting back from the school clinic her phone rang, she was summoned back to the doctor’s office because according to the nurse they had found something that they thought was worth more investigations. Since she was free, she just went back immediately. At the clinic she noticed the nurse who was on duty was looking at her with sadness in her eyes, but she didn’t think much of it. It’s only after she got in that the doctor broke the news to her that her HIV result was positive.
Jennifer got confused and shocked. It was very difficult news to process. The HIV stories she had heard were very horrible, she knew she was dying. Everything crumbled instantly. All she could see was darkness and hopelessness. She felt isolated and alone. She thought of her family and all the people’s lives she would devastate; she had seen how people talked about HIV in the community and now she was one of them. She thought of her boyfriend David, was he the one who had infected her? She had only been in one other relationship, before David. Why her? Why now? After the initial shock she was able to call one of her friends who came to the clinic immediately.
“When my friend got there, she came to hug me immediately, but I pushed her away. I was feeling dirty, unwanted, shame and guilty, says Jenniffer, but my friend assured me she would be my support through thick and thin.” That night I went home and got into bed curled into a ball and I was hoping never to wake up. It was one of the coldest nights of my life. I cried all night .
From a death sentence to relatively good life
“The doctor at the clinic had given me a referral to the infectious disease department and my friend had said she would accompany me there the following day” continues Jennifer. “We were there by 8:00 am the following morning. We met a very nice and friendly nurse who took us in and took me through all the treatment procedures and she re -assured me that this was no longer a death sentence and that I had a fulfilling future ahead of me. After being in the hospital for over two hours and meeting with different professionals, a care plan was prepared, I left feeling reassured but one major task was still ahead… I had to tell David. I met with him later on that day and broke the news. I was prepared for the worst, but he was very supportive and understanding. He later on tested negative which was good news for both of us. We still continued with our relationship but used the necessary precautions to avoid infecting him. We however broke up due to other issues unrelated to HIV.”
Jennifer continues her narration “I still continued with my life normally but deep inside there was this very heavy and dark cloud that was always hanging around, I didn’t see myself as a normal person anymore. Whenever I heard the word HIV my heart would skip a beat even when I was among friends and we were happy, there was still a deep shame and sadness within me. I however completed my studies and graduated but the cloud still hung. I got a job which I loved but my biggest fear was my colleagues finding out about my status, it’s still my fear to this day. I later fell in love with a man who didn’t seem to worry about my status, and we got married and we even have three children all of them HIV negative. We live a relatively good life.”
20 years after the diagnosis: “I still hope that one day I will be able to share my story openly”
“It’s 20+ years since the initial diagnosis but I still find it very difficult to discuss my status with anybody else apart from my friend who still stands by me, my husband and the staff at the infectious disease department. When I look at my story, I would say it’s a success story, but the cloud still hangs. During those initial months after the diagnosis, I was able to get by because I had support from my friend, David and the staff at the hospital, they never treated me differently even though I had all these negative thoughts about myself. Today I get anxious whenever I imagine that someone else will get to know about my status. Nobody in my family knows and I am not ready to disclose to them. I keep my medications hidden hoping my children or any other person doesn’t get to see them. I have tried to get into peer support groups, but anxiety and fear grips me. I don’t hate myself but sometimes I wish that things were different. Sometimes when I hear my friends discuss about HIV and the stigma surrounding it, I feel very guilty and more need to hide my status. I still hope that one day I will be able to share my story openly. And embrace the fear and the dark cloud that hangs on my life.
Jennifer wanted to share her story anonymously, in her email she explained that by sharing her story she feels like it’s one step towards facing her fears. From her story it’s evident that Jennifer is suffering from HIV self-stigma. Jennifer’s story is one of the many of untold stories from individuals out there who suffer from this very little talked about topic of HIV self- stigma.
What is HIV self-stigma?
HIV self-stigma, also known as internalized stigma or self-shame, refers to the negative attitudes, beliefs, and feelings that individuals living with HIV may develop about themselves due to their HIV status. This can manifest as feelings of shame, guilt, self-blame, and a diminished sense of self-worth. Although this is rarely discussed, it’s an important topic to address because self-stigma can have significant psychological and emotional impacts on individuals, affecting their mental health, self-esteem, and overall quality of life.
What are the possible impacts of HIV self-stigma?
- Mental and Physical Health: Self-stigma can lead to increased levels of anxiety, depression, and other mental health challenges. Stress and negative emotions associated with HIV self-stigma can also weaken the immune system and overall physical health.
- Self-Esteem and Self-Worth: The internalization of negative beliefs can erode self-esteem and self-worth. Individuals may start to see themselves as lesser or unworthy due to their HIV status.
- Quality of Life: People experiencing self-stigma may have a diminished quality of life. They might avoid social activities, relationships, and opportunities due to fear of judgment and rejection, leading to social isolation and loneliness.
- Healthcare Adherence: Self-stigma can deter individuals from seeking and adhering to necessary medical care and treatment for HIV. They might delay seeking care, skip appointments, or not take their medications as prescribed, which can have serious health consequences.
- Disclosure Challenges: Self-stigma can make it difficult for individuals to disclose their HIV status to others, including family, friends, and potential partners. This can hinder their ability to build strong social support networks.
- Employment and Education: HIV self-stigma can affect individuals’ career and educational opportunities. They might avoid pursuing certain goals or disclosing their status at work or school, limiting their potential for personal and professional growth.
- Delayed Testing and Diagnosis: Self-stigma might discourage individuals from getting tested for HIV in the first place, delaying their diagnosis and potentially worsening their health outcomes.
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What causes self-stigma?
HIV self-stigma can stem from societal stigma and misinformation about HIV/AIDS. Negative stereotypes, fear of discrimination, and misconceptions about how the virus is transmitted can lead individuals to internalize these biases and blame themselves for their HIV status. Individuals may develop various coping strategies to deal with self-stigma, such as denial, avoidance, or self-imposed isolation. These strategies may provide temporary relief but can have negative long-term consequences.
How Can HIV self-stigma be addressed?
Addressing self-stigma among individuals living with HIV requires a combination of individual efforts, social support, and the broader societal changes. Here are some strategies and approaches to be considered:
- Education and Information: Provide accurate and up-to-date information about HIV transmission, prevention, and treatment. Knowledge can help dispel myths and misconceptions that contribute to self-stigma. Share success stories of people living with HIV who have overcome self-stigma, highlighting their achievements and resilience.
- Counselling and Therapy: Encourage individuals to seek professional counselling or therapy to address the emotional and psychological impacts of self-stigma. Therapists experienced in HIV-related issues can help individuals develop coping strategies, self-acceptance, and resilience.
- Peer Support and Support Groups: Connecting with others who are facing similar challenges can help individuals feel less isolated and more understood. Peer support groups provide a safe space for sharing experiences, discussing strategies for managing HIV self-stigma, and receiving encouragement.
- Faith, Positive Affirmations and Self-Compassion: Encouraging individuals to practice self-compassion and challenge negative self-talk. Self-affirming statements can help counter the effects of HIV self-stigma.
- Empowerment and Advocacy: Empowering individuals to become advocates for themselves and for the rights of people living with HIV. Involvement in advocacy efforts can help shift societal attitudes and reduce overall stigma.
- Disclosure Decisions: Support individuals in making informed decisions about disclosing their HIV status. Discussion of potential benefits and risks and emphasize that disclosure is a personal choice.
- Promotion of Open Dialogue: Encouraging open conversations about HIV within families, communities, and workplaces. Honest discussions can lead to greater understanding and empathy.
- Anti-Stigma Campaigns: Participation in support campaigns aimed at reducing HIV-related stigma in society. These campaigns can help change public perceptions and attitudes.
- Healthcare Provider Sensitivity: Healthcare professionals should create a nonjudgmental and supportive environment for patients with HIV. A compassionate approach can alleviate the impact of self-stigma.
- Media Representation: Promotion of accurate and sensitive media representation of people living with HIV to challenge stereotypes and misconceptions.
- Addressing Intersectionality: Recognize that self-stigma can be compounded by other factors, such as race, gender, sexual orientation, and socioeconomic status. Addressing intersectional identities is important in providing effective support.
- Self-Empowerment Activities: Encouraging individuals to engage in activities that promote self-esteem and a sense of accomplishment. Pursuing hobbies, volunteering, and setting achievable goals can boost self-worth.
Addressing self-stigma is an ongoing process, and progress may be gradual. It requires a collaborative effort from individuals, communities, organizations, and institutions. The goal is to create an environment where people living with HIV can live their lives with dignity, respect, and self-acceptance.
Hivpoint´s Health Buddy 2023