By Baimeng Fan, Beyond Stigma Intern
We face judgment from others as we walk through life. We feel other people’s stares and take those judgments personally. It makes one wonder if those judgments are linked to something beyond ourselves, does it represent the norm of the whole community? Is there some quality within me that is inherently wrong? Am I not good enough for this bigger standard? As we keep proving this impression to ourselves, the accumulation of the unworthy feeling gets overwhelming. It is important to note that these feelings do not necessarily come from our community, they also come from us not accepting ourselves and stigmatizing ourselves — this can also be referred to as “self-stigma”. Stigma and self-stigma are also obstacles faced by everyone when seeking help, its commonality is why it is an important topic to discuss. In the “GoodEnough” webinar held by Beyond Stigma, the speakers address the topic of stigma and self-stigma specific to HIV-positive groups in sub-Saharan Africa by sharing their research or experiences and introducing the “Wakakosha” program.
Why we focus on the ALHIV group --
Webster spoke first about his research findings. He explained: “stigma is a barrier to HIV treatments, this includes sigma and self-stigma, among which self-stigma is experienced three times more than stigma.” Webster establishes just how common self-stigma happens, and while it is important to address negative social biases, change on a societal level is much harder to achieve. This is why working from within is critical. Webster explains: “It is critical to address self-stigma in sub-Saharan Africa because it is home to 85% of adolescents living with HIV (ALHIV).” ALHIV is a group of patients that is more vulnerable to the danger and the impacts of stigma and self-stigma, which is why more care should be paid to this group.
Research findings in the published paper by Beyond Stigma —
Our speaker Camille further expands on this topic by explaining the risk of diagnosis in ALHIV groups from multiple levels in her research paper. In Camille’s focus group study of ALHIV, self-stigmatization is reported by every one of the participants whether frequently or occasionally. Camille reported: “When the participants self-stigmatized, they often had beliefs like: ‘I’m worthless, hopeless, limited in my own agency, or felt that they were dirty or unclean.’” Camille explains that these beliefs can come from “experiencing discrimination as well as internalizing negative cultural values and stereotypes about people living with HIV. And these internalized thoughts can lead to poor mental health, self-isolation, medication rejection, and suicidal thoughts.” Another risk of self-stigmatization comes from disclosure difficulties. After diagnosis, many participants struggle to disclose their symptoms to their loved ones in fear of being discriminated against and being defined by the stereotypes associated with HIV; especially considering the age of the participants — being accepted is hugely vital for adolescent folks, it makes the discloser process even more difficult. From this inability to disclose, the participants would suffer from the stress of this “shameful secret”. Over time, some people would start to ignore their HIV symptoms, and stop taking their medications. This process illustrates how stigma and self-stigma first lead to non-acceptance, which can lead to serious health outcomes. Furthermore, complications brought by the diagnosis often cause some participants to have low self-esteem in their social life. Many participants avoid dating altogether for fear of rejection. In summary, stigma and self-stigma can lead to serious health issues and struggles brought by its complications often cause the participant to feel deeply lonely and isolated.
The Wakakosha program —
The Wakakosha program held by Beyond Stigma provided the service of intervention for young people experiencing self-stigma. Webster explained it is important to start the process of addressing these stigmas in groups through group activities like counseling, meditation, art, and music, and at the end, the respondents would develop coping strategies for stigma-related stress, which is proven to effectively help them become more confident and outspoken.
If you missed it, you can check the #GoodEnough Webinar here:
#GoodEnough Webinar Series
By Tejaswy Swathi, Beyond Stigma Professional Intern
Self-stigma and the power of exploring your thoughts
Do you remember when you had to first take your class online or when you had to work from home when COVID hit? Do you remember how anxious you were about staying at home for a while but you didn't know how long? Now, imagine the feelings of a young adult living with HIV on medication regarding the uncertainty concerning staying at home, thinking they are at a higher risk of COVID transmission, access to medication, and increased chances of self-stigma due to isolation during the pandemic among other feelings. Every person processes fear, anxiety in situations like this in different ways and all feelings are valid, but have you ever thought about how your thoughts tell you about how you feel about yourself?
Wakakosha: the programme
Do you agree when I say - you are what you think and your thoughts have the power to change your beliefs and perceptions about anything. Have you ever been in a circle of people who share similar experiences but live with different perspectives? Has this ever changed the way you view your experiences differently because of the exposure to those perspectives? Wakakosha is one such peer-led safe space that allows one to think and process their thoughts and feelings in different ways and perspectives. The beauty of this programme is that it utilizes abundant creativity and reinforces your power of thinking through Inquiry-Based Stress Reduction (The Work of Byron Katie), psychology, art, music and meditation, and group activities to reduce self-stigma in young people living with HIV in Harare, Zimbabwe.
The two-year programme which has been developed in partnership with Zvandiri and CeSHHAR Zimbabwe has three stages:
1- Firstly, formative research as the first stage to understand the unique beliefs and experiences of young people living with HIV;
2 - Secondly, A 16-week self-stigma course conducted on the themes of HIV disclosure, body image, relationships, shame and guilt, relationships, sex, judgement of others, future, God;
3 - Thirdly, developing a self-stigma tool box with different components that includes a revised workshop curriculum, an online resource hub, a short three day self-stigma training, and a course to train the trainers for the sustainability of the programme and its learnings.
Highlights of the programme
One of the songs developed at the end of the workshops resonates the participants' feelings and one can’t help but sing or step when they hear the beautiful voices singing together. One of the verses of the song sung as part of the programme is “There is so much stigma, but I will rise above” and this is just the beginning of a journey from self-stigma to self-worth through a process of questioning your thoughts and turning them around.
A verse from the song from the workshop says:
“Our thoughts tell us how we feel, we have a choice” and isn’t this something we all sometimes overlook, that we always have a choice in the way we think.
During the uncertain times, the programme, as well as the research, has taken a turn of being online instead of in person, as it was the safest and best available method then. However, Beyond Stigma has continued its effort to reduce the stigma in young adults with HIV, and we are drifting back to having in-person workshops to contribute to the growing field of HIV self-stigma. This is just a glimpse of how Wakakosha is positively changing the way we process our thoughts and how we live with them. The power of your thoughts and the fact that you have a choice about how you feel can be a takeaway for everyone out there who has ever doubted their self-worth in their lives.
By: Zandi Bosua, Intern at Beyond Stigma
Imagine this. You are having the best day outside with your friends, the sun is shining, and everyone is in a great mood. You went out cycling and swam in the ocean for the first time in a while. You are lying in the warmth of the sun while joking around with your friends. You come back from this fun day, in a great mood until you look into the mirror. That’s when you think the words “I look terrible, I’m fat and my hair looks awful. I can’t believe I looked like this all day.” Just like that, the day is shattered, and you are in a bad mood. This was my experience just the other week. My belief is that I am not worthy because my body is not perfect. It should be said that I do not think and believe this thought all the time, but it is enough where I feel as if it effects my life negatively. This stems from growing up around women who constantly talked about the imperfections of their body. It comes from a culture that is body obsessed, where a lot of a woman’s value is placed on what she looks like.
Body image is a person's thoughts, feelings and perception of the aesthetics or sexual attractiveness of their own body. Negative body image is seeing your own body in a negative light and it has been a worldwide problem for many decades. Some of the consequences of negative body image include anxiety, depression, eating disorders such as anorexia and bulimia, and exercising excessively.
Everyone seems to have had some variation of this kind of moment when a single thought can turn a fun day into a bad one. The reaction is almost unconscious, it is a negative thought that has been repeated over and over again without question so many times before that it’s rarely noticeable how much it affects you.
It is a slow process to overcome this every day, but it starts with awareness of how heavy the thought feels. Then questioning if the thought is true and if it is worth having. This process. has helped me slowly overcome negative body image, it has taken me a while to realize that the progress will not be linear but that it will eventually get better.
Inquiry-based Stress Reduction is Based on The Work of Byron Katie, ©2020 Byron Katie International, all rights reserved. www.thework.com.
By: Zandi Bosua & Nancy Uzoagbado
Self-stigma is defined as negative judgements towards oneself. The first step to addressing self-stigma? Awareness. Beyond Stigma uses a method called Inquiry-based stress reduction (IBSR) which is simply four questions that builds awareness by simply questioning the stigma or particular thought/belief in someone’s head.
Lauren and Tara are both successful career women working in New York City and Washington DC. Despite their success, they both experience self-doubt and suffer from self-stigma.
Lauren has been working as an engineer in New York City for the past six years. She has been promoted and praised for her excellent work in that short amount of time. Working in a male dominated industry has its own challenges, engineering has only recently been introducing more female engineers. This fact coupled with the sexism women face in the workplace has led Lauren to have certain negative self-judgements in her abilities.
Belief: I am not as well-equipped for my job as a man is.
1. Is it true?
“At the core of it, no. I work with many older men, so would I be taken more seriously if I was not a young woman? Yes”.
2. Is it absolutely true?
“No. My ability to do my job has nothing to do with my gender”.
3. How do you react when you have the thought?
“I doubt myself. I hold back my thoughts in big meetings. I make myself small and let others speak for me”.
4. Who would you be without the thought?
“A great engineer. A confident leader. A dependable resource”.
Were these questions helpful?
“Yes. The only thing holding me back is myself”.
What will you do differently now that you know about this technique?
“I will remind myself that I have been hired to do a particular job because I will do it well. I do it well-enough to hold the position that I have now. I do not need to doubt myself when a certain type of person is in a meeting and I should speak my mind. In moments of doubt, I may also rely on coworkers and team members that know to amplify me”.
Tara has been working in Washington DC for the past few years and is, by all accounts, successful career woman. She tackles tasks head-on daily and shows confidence and creativity in her work projects. She has been supporting herself since she was 16 years old and has done well for herself in the past decade. She still feels as though her success is not enough and constantly questions whether she is doing enough.
Belief: I am not smart enough or dedicated enough to truly succeed at something.
1. Is it true?
“Yes, I jump from job to job looking for something that is going to stick. I don't have the patience to outlast things once I find big flaws”.
2. Is it absolutely true?
“No, I work hard and from this stigma is a desire to continue to grow and learn. I don't stick to anything because I feel my learning has plateaued and I want a new challenge”.
3. How do you react when you have the thought?
“Anxious. Anxious. Anxious. I have so much anxiety about commitment or feeling stuck”.
4. Who would you be without the thought?
“Not myself. I would like to live with little to no anxiety, but that inability to sit still is also what keeps me going, searching for something more that might stick”.
Were these questions helpful?
“I was able to answer the first three questions easily and then the fourth question threw me for a loop. I feel my greatest weakness is also my greatest strength. I have been able to experience so many beautiful things because of my yearning for more. It is just about balancing it all”.
What will you do differently now that you know this technique?
“I love the idea of asking the same question over and over again and consistently getting a deeper answer. When I feel anxious I keep asking if it's true until I get to the core of it”.
Inquiry-based Stress Reduction is Based on The Work of Byron Katie, ©2020 Byron Katie International, all rights reserved. www.thework.com
By: Camille Rich
About a year into this pandemic, COVID-19 has dramatically changed the lives of billions of people around the world and over 2 million people have died. The longer we have been living in the pandemic, the more stigma has arisen around those who contract COVID-19. COVID-19 stigma is based in the fact that there is still much we do not understand about the virus, we are afraid of this unknown, and we associate that fear with ‘others’ and place blame on them. Public stigma and acts of discrimination have been recorded when people blame those who have coronavirus, refuse to let healthcare workers ride public transportation, and demonstrate acts of racism towards specific groups of people. This stigma can be harmful by adding to the stress of frontline workers, driving people to hide their illness, preventing people from seeking care, and causing emotional distress to those who are diagnosed.
Those with coronavirus can also experience self-stigma, the negative judgements towards oneself. COVID-19 self-stigma can make people have self-blame, shame, self-loathing and even suicidal thoughts. Having survived COVID-19 myself, I recognized that even I found myself hesitant to tell people about my illness and withdrew from talking to friends. I told myself I wasn’t careful enough and if I had just been ‘better’ then this wouldn’t have happened to me. I became ill close to the holidays and so I felt a lot of anger towards myself when I had to spend Christmas alone.
However, when I took a step back, I realized I was not to blame. I was a frontline healthcare worker treating people with a highly contagious virus. I had taken precautions and done my best. I thought my friends would be judgmental towards me, but instead when I finally told them, they were compassionate, concerned, and took the time to call me each day to check in. My self-stigmatizing thoughts had kept me from the support network I needed and made me feel angry and alone. However, once I recognized these thoughts as self-stigma, I found that I could take the lead in improving my mental health and my experience of COVID-19. I learned to be kind towards myself in my recovery.
I am not the only one who self-stigmatized and felt this way while having coronavirus. So it is important to recognize the emotional pain and self-judgements that those diagnosed with COVID-19 can experience-on top of the virus itself. I would ask everyone to watch their own judgements towards themselves or others with COVID-19, learn accurate information about the virus, and show compassion to everyone as we survive this pandemic together.
By: Camille Rich, Professional Intern at Beyond Stigma
During the past year, COVID-19 has erupted into a global pandemic that has deeply impacted the lives of people all across the world. We have had to stay indoors, restrict our movement, and constantly wear personal protective equipment. COVID-19 has limited our ability to access medical care and support networks and taken our loved ones from us. On top of all that, vulnerable groups, such as people living with HIV, still have to deal with issues that predate the spread of coronavirus and find a way to manage in the current circumstances.
Beyond Stigma recognizes that HIV is still a critical problem and epidemic in Zimbabwe. There are some estimates that the coronavirus could put back HIV efforts 10 years due to movement restrictions, lack of medication access, limited support networks, and fewer organizations being able to reach those living with HIV. Without those resources, people living with HIV could be susceptible to experiencing self-stigma and its negative effects. Therefore, Beyond Stigma knew that continuing our work and research on HIV stigma in Zimbabwe was still absolutely critical despite the pandemic.
In 2019, Beyond Stigma and Africaid had decided to partner on a formative research piece to support and guide a self-stigma intervention planned for young people living with HIV in Zimbabwe. I was invited to the team for my research dissertation of my MSc. in Global Health degree at Trinity College Dublin. Together we developed a research plan to understand the unique beliefs and experiences of HIV self-stigma as experienced by the young adult members of Africaid. This research project was intended to be in person interviews conducted in Zimbabwe.
Once COVID-19 hit, I realized that I could not travel to Zimbabwe and many members of Africaid were no longer coming to the facility due to government restrictions and worries of coronavirus. Without medication, HIV causes immunosuppression, so people living with HIV are at increased risk for catching coronavirus. The research boards temporarily shut down and we were unsure of what to do. Do we postpone the research? Do we change the research project? Do we wait it out? How do we adapt? No one had been in a situation quite like this before.
However, we knew that despite how uncertain the world was, that HIV was not going to disappear while coronavirus raged on. We knew that those living with HIV would be disproportionately affected by the crisis and that research and interventions would be needed for people living with HIV more than ever. So, we decided to adapt. The team and I came up with a new plan that allowed us to stay safe and continue our work at the same time. We redesigned the research project to be conducted online and only included members of Africaid who were adherent to their medication in order to minimize risk of coronavirus. Questions and activities were changed and adapted to the online format. Whatsapp and Zoom became our new best friends as we figured out communication and collaboration techniques remotely. In the end, with extra hard work and fantastic teamwork, we were still able to achieve our goal number of interviews.
While the research experience was not quite the same online, we were able to gather valuable data for this study and for the foundation of the self-stigma intervention for young adults. Our findings will help contribute to the growing field of HIV self-stigma and demonstrate to other researchers that important research can still be completed even in the time of COVID-19.
By: Robert Bartram
Vongai is abundantly clear about what self-stigma means to her. It is, she says, "when I blame myself, I limit myself to certain things, I am ashamed, I isolate myself, I get depression, I'm not confident of anything. I feel inferior." All this because, at the age of 39, she was diagnosed with HIV. She was unable to work properly, convinced herself that people were always sneering at her, and could not speak to anyone.
But that has all changed thanks to Beyond Stigma. Beyond Stigma bases its activities on the 'The Work' philosophy devised by Byron Katie. It tackles the cause and source of all stigma - our individual selves. During the period that practitioners undertake The Work, they come to see that all stigma derives not from the external world, but the inside. In short, we force these negative and destructive thoughts on ourselves.
That's why Vongai is now so determined to help others as well. And she is just as specific about how to vanquish self-stigma: by undertaking the Inquiry-Based Stress Reduction (IBSR) programme. The reason in part, she says, is that individuals don't need to work with others for it to be successful, and all self-care can be undertaken on one's own. The effect on Vongai herself has been transformative, and she is certain that it can be just as successful for anyone else.
In the past, she was always worried that her injured leg would drag behind her. She would focus unduly on this, causing her great anxiety even when she was sitting down. Now, however, she does not worry about this at all, and does not care how she looks when she is walking. In the past, she was very nervous in company and would often not speak up at meetings or other large groups. Now, however, she is open and engaging at all public gatherings and will happily talk about the benefits of challenging self-stigma associated with HIV.
At work, she is much more confident about her day-to-day tasks and even realised that she deserved promotion. Before, she would have lost her temper any time someone asked her about what she was doing, perceiving it as an attack and that she was not up to her job. "You are looking down at me," she would shout at her interlocutor. But now when she has such an encounter, she is much calmer, and just lets the situation run its course, which it always does in her favour.
But the most remarkable change has been with her family. She used to argue a lot with her son, whom she thought was lazy because he was not interested in doing his school work or even reading. It made her particularly angry because she was paying expensive school fees. However, having worked on herself through IBSR, she began to see that she needed to show him more respect and give him his space. Now she just tells herself that she has done her best to encourage him. This softer approach has worked wonders. Her son began to read much more and after a while approached his mother and told her that he would do his best to pass his school exams that year.
Everyone around Vongai - family, friends, colleagues - has noticed the change in her. She knows the secret to her success, and is desperate to let everyone in on it too. Whenever she sees others in distress, she automatically suggests that they undertake the IBSR programme. No problem is too great for the Work, she asserts, happily confident in her transformed self and the new lease of life it has given her.
By: Robert Bartram
Softly-spoken Nyasha lives in Zimbabwe. Just a moment's acquaintance with her will tell you that she is kind, generous and thoughtful. She discovered that she was HIV positive in 2000, and initially her diagnosis sent her into a tailspin. She went into her shell, didn't speak to anyone and lost a dangerous amount of weight - all things that would worsen her condition, not improve it. Even at her workplace, she would simply collect her cup of tea during work breaks instead of socialising with her colleagues as she had always done before. Her condition made her paranoid, convinced that everyone was talking and laughing about her behind her back. But it was not the disease itself that caused her to be like this, but the sense of social stigma that came with it.
This is often the all-too tragic response of people living with HIV. Believing they will become social outcasts, they force this punishment on themselves. But Nyasha has broken out of this dangerous cycle. With the help of the work of Byron Katieu; she has not only come to accept her condition, but counsels others in their response to it.
"Basically I was seeing myself as no longer fit, no longer part of them." Eventually, after much prompting by her doctor, she summoned up the courage to attend a support group. And then she suddenly realised that she was not alone. She opened up bit-by-bit, telling first her sister, then her sister-in-law. They were supportive, but she implored them not to tell anyone. But realising that if she ever fell ill, she had a duty to inform other people around her - such as her manager - not least so that they could advise any medical staff of her condition. The final hurdle was to inform her mother, and once she had done this, she knew the stigma would disappear.
"My main problem," she says, "was that I couldn't accept it. I wanted to hide it, yet it was showing." That's why her advice for people living with HIV is so straightforward: to accept it. To accept HIV is to "liberate yourself psychologically." Many run away from the truth of the condition, even refusing to get tested in the first place. The only way to live life is to live positively, she asserts. Quite simply, "if you live positively, you can live to [the age] where you were supposed to get to."
She implores others to be open with loved ones, especially children. She presumed that her children would never understand "because they are children" but soon came to understand that "they have to know what is going on...because they are your support system." In the early days, after initial diagnosis, she even suggests that they can be a practical help in reminding someone living with HIV to take their medication.
But sharing with non-family members is also vital, says Nyasha. She is now so open about her condition that she is a volunteer helper for many others with HIV and loves the fulfillment of helping others. She is so positive about her new life, she says, that often other people with HIV refuse to believe that she has the condition too!
Finally, she wants the world to know that HIV does not discriminate: it can kill the most significant or the lowliest people in society. But by the same token, anyone can live with it too, they just have to generate a positive outlook and believe they can defeat it.
By: Robert Bartram
Julien Chiwunda is 59 years old, a widow, and the mother of four grown-up children and four grandchildren. Her husband passed away from HIV 20 years ago, and she herself tested positive for HIV in 2003.
As with so many people living with HIV, it was not the condition itself that made her so unwell, but the self-stigma that came with it. For instance, when her husband was ill, he was transformed in size and seemed to waste away in front of her. When driving him to the doctor, as she did every week, Julien would see other people looking at her. Because she herself was so healthy, she believed that they assumed that her husband had caught the virus from her. "Every time I would get prepared to take my husband to the doctor," she says, "a thought would flash in my mind and I would feel miserable."
The stigma even poisoned her personal relationships. When her husband's relatives visited home, she convinced herself that they were talking about her as the source of the problem. As a result, she would withdraw and become miserable without anything ever being said to her.
Julien is well aware of the damage self-stigmatizing can have, as it "limits me from doing what I know I am able to do. Because I just judge myself and say I can't do this because I am HIV Positive." This condition was so marked that at one time she could not see the point of continuing her education, as she assumed that she would die soon. It's also the reason why she didn't build a new house for herself. What's more, she often wished that she were dead.
But Julien turned her life around with the Work. She is now so passionate about the Work that she is happy to label it "a tool that unlocks one's freedom...The Work will give you an open mind." Today, she questions every thought that comes to her and simply asks herself whether it is true or not. "And then the moment I ask myself that question, I find that it's not true, it's just my thinking." Now she is free and simply doesn't care what people think about her.
She encourages other people to adopt the Work too. It gives anyone, she says, the "freedom to sit down, go through your own life, go through all those stressful thoughts, question the thoughts step-by-step...it's a road that leads to you attaining your freedom." Above all, she insists, the Work "equips them with the ability to forget what happened yesterday and look forward to what is going to happen, because that is the reality."
The positive results have had a practical effect, too. Julien is convinced that the Work shows each individual the innate strength we all have in running our own lives, managing our affairs, even running businesses. The Work allows us all to live completely and productively and to enjoy our lives as they unfold.
By: Robert Bartram
Imagine if you had an illness that made it almost impossible to go out each day. Imagine if that illness meant you couldn't eat properly and lost dangerous amounts of weight. Imagine that it made your work more difficult and you could never make any progress.
Now imagine that illness made you so frightened that you could barely speak to anyone about it, not even your family. Imagine you felt so ashamed that you couldn't discuss it with your friends, whom you begin to ignore but only because you are convinced that they are ignoring you. Imagine that it also made you so angry you could only shout at your children when they did something wrong. Or shout at your colleagues because you truly believe that they are criticising you and laughing at you behind your back.
There's a name for this illness: HIV. But it's not the HIV itself that causes all these terrible problems, but the stigma that accompanies it. The stigma that makes you believe you are no longer a worthy human being.
But here's the thing: you can choose to ignore that stigma. You can choose to ignore all the destructive beliefs that can come with HIV and you can live your life to the full once again. Not only that, but you can help others to overcome their stigma too, because believe us, you're not the only one suffering from it. In fact, you can learn to love yourself so much that it may sometimes even feel that the HIV itself has disappeared too.
And yes: I'm talking about you.