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 suffering from 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 a sufferer 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 sufferers of 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.
by Susan Vielguth
She was in love. She was a new mother. They had been together for years and they were planning their official wedding.
And then, an unexpected shock.
Months before the big day they were involved in a car accident and for her fiancee, it was fatal.
She was completely devastated.
Years later, she sits here in this small tin-roofed classroom with us and the rest of the participants learning about how to question stressful thoughts with The Work of Byron Katie. She’s sharing her experience of how she found out she was HIV+ and this is how it began.
She went on to share that weeks after his death she went for a check-up with her doctor, the one she shared with her to-be husband, and he told her that her late fiancee was HIV positive. He went on to say that he was unable to share this news due to confidentiality reasons while her partner was alive and encouraged her to get tested. It was news she never expected to hear. She described it as the biggest shock of her life.
As the following days unfolded she found out that, along with the doctor, his family also new of his status. They were surprised that she was never informed by him.
Soon after it was confirmed that she was indeed HIV+ and she was left feeling bitterly betrayed.
That bitter feeling, the massive despair that she spoke of, this is what she poured out on to her Judge-Your-Neighbour-Worksheet. Finally all that raging pain had a right to life- on paper.
“He intentionally infected me with HIV”
A belief is defined as something one accepts as true or real; a firmly held conviction. And the statement above, the first one written on her worksheet, was just that. It had been accepted as true for years.
She initially answered the first two questions very quickly. It was a rapid succession of “yes’s”. And so, we slowed it down. Without experience, this Work may appear to be an intellectual process while to an open mind it is a deep mediation. So, we allowed time to really check it out and contemplate if there was anything that the mind was missing. “Is it true?- Can you absolutely know that it’s true?” These words make up two of the most powerful questions to still the mind and, even if just for a moment, step out of ones painful perception to examine if this individual interpretation of reality is accurate.
She answered “no” to the second question and took time to experience this new and unexpected paradigm. Afterwards she went back to the old, to share how she reacted when she believed that the love of her life infected her intentionally. All the inner turmoil, deep feelings of betrayal, and anger surfaced. She shared that she looked back on those years where they were inseparable and described that she saw him as a liar, saw the love that they shared as mere deception, and was left with hate and resentment towards him. This belief tainted any experience she had ever had with him; it made every laugh, act of kindness, and expression of love a lie. She saw all men, even her father, as dogs.
It took time for her to drop into who she would be without this story, without the thought that he infected her intentionally. And, when she did, she spoke slowly. How she would be able to see how much he loved her, that she could feel the love now while the memories of their time together surfaced, and she witnessed how her anger, the anger that had spread to all the men in her life, dissolved.
In the turnarounds she slowly went through the memories of him from completely new perspectives. She discovered that it was truer for her that he didn’t intentionally infect her. She saw how much fun they had together, how she was a confidante for him, an advisor when he was unsure of himself, and how contentedly inseparable they were. She discovered that it could have been fear, not cruel intent, that led him to keep his status a secret; fear of rejection, the loss of the one he loved, and shame.
As her examples for turnarounds continued to pour out, she reunited with the man she loved once again and said, “I think I’m really getting this meditation thing now, wow.”
Welcome to The Work.
by Susan Vielguth
The belief "I can't" can blind us to options, solutions, alternatives and our inherent freedom. Preventing us from seeing what we do have and working with it from a place of vibrancy, empowerment and abundance.
In the groups each person made a list of what they believe HIV prevents them from doing that felt stressful for them. Below is one of the participant's list.
Because I’m HIV+ I can’t:
- have friends
- enjoy life
- have more children
- go overseas
- carry heavy duties
- donate blood
- change my status
- have unprotected sex
- eat what I want
- see my children graduate
- plan for the future
- stop taking medication
And, do you know what was AMAZING?! At the other side of inquiry every single thought had a line through it. I would ask each person I saw in individual sessions to let me know if there was any thought on the page that had remaining stress associated with it, any that they still believed…there wasn’t.
Through asking the questions of The Work a lot of thoughts were seen through by simply acknowledging that in reality they COULD do those things. Things such as eating those greasy foods, not taking medication, carrying heavy duties, having unprotected sex, etc. At the other side of inquiry they found where it was a choice to change their diet, take their medication, and alter their lifestyle. They discovered they preferred the option of living as healthy as possible.
Then there were the beliefs that with just a little contemplation were debunked with smiles on their faces and countless examples in the turnarounds: “I can have friends” “I can enjoy life” “I can go overseas, plan for the future, work, have children, succeed…” (Many HIV+ women in the class already had HIV- children…even the ones with the belief on their list!)
And then there were what appeared to be unquestionable facts.
“I can’t change my status”
We all know what this thought is like. That thing you just wish was different about your body, your childhood, your life-situation and the hopelessness that ensues with the thought “I can’t change it.”
After answering the 4 Questions we arrived in the turnaround “I can change my status.”
Countless specific examples were found of how each time they questioned a painful belief they had about their status, the stress disappeared, and the virus became less and less monstrous. They found how it wasn’t their status but their thoughts about their status that caused their stress and that the status changed as a result of their beliefs about it changing.
• • •
“I can’t donate blood”
This thought was especially stressful for one woman in particular. She used to go with a group of friends regularly to “help save people” with her blood donations.
After two decisive “yes’s” to the first two questions, she described the effects of believing the thought: how she felt sad, dirty, disappointed, rejected, and excluded. Without the thought, in the same situation of being HIV+, she found how she would be moving on with her life, no longer dwelling, present.
Then in the turnarounds, it got interesting: “I can donate blood”
After some serious introspection she found how she is saving people’s lives now by wearing protection, actively sharing information about HIV, and taking her medication as well as eating right. She was able to do all of this because of the blood pulsating throughout her body. With each smile, kind word, and supportive action she was donating her blood.
We questioned the same thought in the other group as well and even more examples surfaced. Every time they got their blood taken to check their CD4 Count, they were donating their blood in the service of their health, their life. At one point, one man perked up and with a big grin on his face exclaimed, “We can donate our blood for research!”
Yes! Yes you can.
by Susan Vielguth
Since testing positive with HIV, my friend expressed that she doubts that her daughter-in-laws genuinely accept her. She shared that while she’s around them she’s constantly scrutinizing; attempting to decipher whether or not their kind words and actions are merely fronts concealing their true disapproval of her.
She recalled a situation, years ago, when she was shaping her eyebrows with a razor in one of her son’s home. Her grandchild ran over to her in an excited pace and just before she could pick the razor off the table herself she heard her daughter-in-law from a short distance, “Mum, don’t give her the razor!”
She felt judged and very hurt. To her mind, it was clear that her daughter-in-law was undeniably stigmatizing her with the fear that she would spread the virus to the little one. She saw it as evidence that she didn’t accept her.
“My daughter-in-law doesn’t accept me”
Instantaneously she felt unwelcome in their home, like she had no dignity, was ashamed of her status and attempted to mask the hate she now felt towards her daughter-in-law. As a result, she stopped her frequent visits.
On the other side of questioning the thought, she was amazed with the discovery that the the pain she felt wasn’t due to the words her daughter-in-law said, rather, it was the meaning her mind gave to the words.
“Believing what you fear makes it true for you, and that doesn’t make it true.” -Byron Katie
In the turnarounds she found that it was truer for her that her daughter-in-law said it out of fear of her daughter cutting herself with the razor- a mother’s instinct reaction- not from a place of condemning her status. She saw that there wasn’t even any way it could have been contracted, there was no blood on the razor, and she asserted that her daughter-in-law would have known this. In the turnaround “My daughter-in-law does accept me,” all the examples flooded in and, this time, she was able to take them in. Examples of how her daughter-in-law would buy her good quality foods when they came into money, order taxis for her when the cues were long at the hospital, and often call to check in to see how she’s feeling.
I love that this Work can reveal the negative assumptions we make about what others are thinking. And through it we can get back our sanity, clarity, and maybe even a little more quality time with the people we love.
by Susan Vielguth
In an individual session this past week I sat on a blanket in the park as I heard one of the participants share what the last class was like for her. She asked me if I had noticed that she had tears in her eyes during one of the exercises we did and went on to share why.
She recounted that after testing positive with HIV the only soul she told, her Mother, swore her to secrecy. She described her Mother as extremely stressed by the news and remembers continually hearing her say that she refuses to have her children die before her. Her Mother’s health started to deteriorate rapidly until she finally passed due to what my new friend described as “being stressed” by her contracting HIV.
She believed that her Mother’s death was her fault. She had been living with this belief for years.
“Your Mother’s death is your fault” - Is it true?
We started with the first question of The Work and as the inquiry unfolded I traveled with her through the internal cause and effect of believing that thought. With the thought she described her bouts of crying, the guilt, the shame, and immense despair. In her mind she saw images of how her Mother would still be alive and healthy today if she hadn’t told her & compared that picture in the mind to the reality of her Mother’s death – she saw it as proof that she was to blame. At this point in the inquiry she was holding her head in her hands with tears streaming down both cheeks.
When it was time to move to question 4 she closed her eyes and, in silence, she waited. When she was moved to speak she shared that without the thought she would be lighter, freer, taking care of herself, and embracing the joy in life.
In the turnaround to the opposite, “My Mother’s death is not my fault” she realized that she had no control over how her Mother reacted to hearing that she had HIV. She saw that her Mother was very stressed by her own thinking & assumptions. She later noted that when she eventually did tell her sister about her status that her sister didn’t become intensely stressed or pass away. And it was as if, in acknowledging this, it reaffirmed that she herself had no control over how her Mother responded and allowed her to consciously recognize that there was never any malicious intent in sharing her status. She discovered her innocence.
As her examples for the turnarounds came to a close, she looked at me with plump tears in her eyes and with a smile on her face said,
“I feel free.”