Invisible Stigma, telling about HIV in a series language
Invisible Stigma
TV series entertain us, amuse us but, in the best cases, they also help us to find lost imaginaries or to elaborate new ones. So can a series also help to rewrite the common imagination about the life of people living with HIV?The goal of Stigma invisibile, the TV series that in five episodes weaves true stories of people living with the virus, is to tell the change in the daily life of those who live with the infection but also the battles that remain to do to eradicate the stigma. Since last May 4th, the series is visible, in clear text, on the Discovery + platform. Scientific information on the virus, and on the progress that medicine has made to give HIV patients a quality of life equal to that of the rest of the population, is not lacking and is easily accessible.
However, confusion and prejudice still exist and perhaps there is a lack of awareness of how a person with HIV lives on a daily basis in today's world, not in the world of forty years ago. And so, from the collaboration between Discovery and Gilead, a project was born that chooses the most accessible way possible to get the message across and also create empathy.
After all, a self-respecting series always focuses on themes such as love, fear, revenge, awareness and does nothing different even Stigma Invisibile, in its five episodes conceived and written by Michela Chimenti, directed by Alessandro Carlozzo.
The series tells and at the same time aims to inform, by answering those questions that all people have asked themselves at least once, given that the virus exists, it has never disappeared and it requires an awareness approach that is independent of any dynamic (age, gender, income, etc.). It also explains the progress made to allow patients to manage it on a daily basis, like other chronic diseases.
The series, therefore, as Cristina Le Grazie, Gilead Italy medical director explains, "is a project that goes precisely in the direction of bringing out these issues clearly. A TV series seemed to us the most immediate and familiar format. to tell the best of HIV and how things have changed in recent years. It arises from the need to bring to the small screen the stories of people who could be our friends, acquaintances, brothers, parents, but of whom we always talk too little and there is no information, if not directly touched by the topic. Information is the most powerful tool to break down prejudices and allow us in the future not only to eliminate the virus but also to produce a series with a different title. ''
On the screen, alongside the protagonists, there are also experts, to give an in-depth and clear picture of the theme. ttolines how, in order to break down the stigma, it is necessary to understand the mechanisms that make the virus undetectable and consequently non-transmissible thanks to the treatments. It is also necessary to abandon a guilty imaginary of the pathology, which is not a fault or a demerit, but a simple health condition. In fact, as Cernuschi recalls, "the people who gave their testimony in the series are people who have overcome all this but they are a very small minority, the rest of the people do not tell anyone, there are people who only tell their infectious disease specialist, and I find this terrible because it means having a tremendous fear of being discriminated against and so you can't live. Anyone can have it, the doctor, the manager, the footballer, the rugby player, anyone in short. In the meantime, I think that people with HIV who will watch this series will feel less alone, hearing the testimony of those who have managed to talk about it, maybe it can be used to come out and be more confident ".
Being Invisible
She looks fine. She always does, always did. Appropriate clothing, hair combed, and a soft smile on her lips. She speaks in class – always has something to ask or add to the conversation. Her grades are stellar, and she seems to have friends. What’s the problem?
I was 13, 14 years old when it got intense. I can’t recall when I first started feeling depressed, or when the waves of self-loathing began. But by the time I was a teen, my inner life was a mess. The more competent I seemed on the outside, the more I was hurting inside. Low self-esteem gave way to clinical depression and anxiety and on-going, intense suicidal ideation.
How, I wondered, couldn’t people see it?
And yet, I was afraid of people seeing it. I knew something was wrong, but I figured I was just defective, and so it was my job to pretend to be okay, to do everything I was supposed to do as a young adult — so that, ironically, no one could see. I didn’t want to disappoint those around me, especially my parents. The more I hid, the worse I felt. But the idea of letting people down was too scary. I kept my head down and my façade thick.
It worked, sort of.
I had lunch with the woman who was my best friend in junior high and high school. She was visiting Denver, where I live, to explore the mountains of Colorado. We had not been in touch for years, so this meeting was lovely. And one the first things she said to me was, “I didn’t know.” She had found her way to my website, where I have posted articles, among other things, about my struggles with mental illness. “I didn’t know,” she said. “I wish I could have helped.
Mental illness, like many other chronic conditions, is often invisible. So ashamed with our struggles, we try to hide it, to not been a burden, to not be a freak. I have both ongoing, severe mental health challenges, and I also have chronic physical difficulties: chronic fatigue, chronic migraines, and persistent dizziness and balance issues. And the only one you might see is my vestibular system run amuck, because it causes my balance problems, and I often use a cane or even a walker or wheelchair, when things are really bad.
The thing is, I have my balance issues in hand. I know when to ask for help, and, aside from walking in the dark or in the snow, I don’t often need help. But the cane is visible, and the other stuff, not so much.
For those of with chronic, invisible illnesses, from bipolar disorder to Lupus, from being on the Autism Spectrum to having Multiple Sclerosis, our question is: how do we make our needs visible? Is there a way of preserving our privacy and still get what we need ? How, in our communities beyond just family and close friends, in our synagogues and our book groups, our friends and the parents of our children’s friends, our colleagues and our karate partners: how, in all these contexts, do we ask for help?
The flip side is also a challenge: how do our organizations and synagogues, friends and colleagues, recognize us in all our splendor? So many people in our lives, those close to us and those to whom we just say “Shabbat shalom,” at Kiddush, want to help. They simply don’t know what to do. How can we make our invisible illnesses visible?
As individuals with challenges, part of it is upon us to risk telling our truths. It has been scary for me to write about my mental illnesses because of stigma, the risk of being shamed. And yet, the more I speak and write about my struggles, the more people I have in my life checking on me. When I go missing from shul or seem stressed at a committee meeting, I now have friends who reach out, express their concern, remind me that they care and it is okay to ask for help. It has been a learning curve, for my friends, and for me. It is easier to say, “I am fine,” when asked, but. . . when I say “I am depressed and I have a migraine and I am beginning to panic,” I have a circle of family and friends who listen. These are people who have promised that they will be fine even if I need help. And so, I am learning to speak up. Not in every setting, not with every person I encounter, but with enough people to have it matter.
For friends watching from the outside, it is hard to know what to do as well. Should I ask if a friend seems anxious or down or neuro-divergent? Will that embarrass them? If I don’t ask, how will they know I care?
And this is tricky: how to make clear my concern and also underline that I am not judging; I just want to help. Those very words can be transformative, both for the person with an invisible illness, and for their communities. “I treasure our friendship; I care about you just as you are. And. . . is there anything going on where you might need my help?”
In our wider communities, we already instinctively reach out to help those who visibly need it, from holding open the door for a mom with her hands full of children and diaper bags. When someone joins us for Shabbat services, we whisper the page number; for visitors that seem more confused, I might hand them my open siddur and point to where we are on the page.
I go to Conservative synagogue, where, many years ago, there was a family of 5 -=- two adults, three kids –sitting quietly behind me for the whole service – all three hours of it. The children sat so nicely, not thumbing through the siddur, not reading books, not playing quietly with toys. They just sat. And so, when we got to Aleinu, very near the end of service, I turned and said to the parents, “Your children have been SO good. And. . . we are almost done now and then there will be food.” They smiled, and relayed both messages to the kids. I did this because I realized that they were probably not Jewish and didn’t know how many more hours there might be. I looked, I saw what appeared to be a need, and reached out.
In what ways can we as individuals reach out to others, even people we don’t know? We ask. We exchange a smile. We say how happy we are that person or family is there. And then, we poke a bit further. A text to say I missed you at school today.
For Institutions, part of the way we welcome all comers, those with major illnesses affecting their lives and those whose broken places are more healed, is by signaling that all belong here. We have ramps for those who use a wheelchair, and room signs (especially bathrooms) in Braille for those who are blind. Shuls, especially, should have mental health resource sheets in their lobbies and, perhaps, in their bathrooms, so that those who are struggling might discretely put the phone numbers of crisis lines into their pocket or purse, for private use later. Some places have bags of Shabbat toys for children to use during services and afterwards; this is a clear overture to young families, but also remind the whole congregation that we treasure our children, that we want them here.
These accommodations, however, help not just those with the particular need. Rather, showing visibly, in our construction and in our literature, that we know people have illnesses, severe and mild, obvious and hidden. If we really want all people to feel at home in our synagogue, then we want to signal, in as many ways as possible. We strive to create a culture wherein if you need something, it is safe to ask. We have magnifying glasses for those whose reading vision is failing, and we have links to mental health crisis lines for those who need support. Both these needs, all of these needs, are valid.
Concretely, what else can we do? Mention mental health from the bima, over and over again, whenever we say a MiSheBerach for the ill. Remind our chesed committees, our caring committees, that families need support, not just when there is a new baby or a recent death, but later. Can we check in six months later to see how the new mom is doing, or how grief is playing itself out?
It also helps to understand, individually and as a community, of the limitations folks with chronic illness often have. What seems unreliable to the outside observer is simply the attempt of a person with an unseen disability to participate in communal life. So many chronic, invisible illnesses are terribly taxing on the person who is ill. She may simply have few hours in the day to function than the average person, and many simple things can be difficult. And so, she may try to be part of committee or taskforce, or even be room-mom, and then discover that she does not have the energy for the evening meeting, or she needs her Sunday to recover from the week in a way that the average healthy person does not. He is not “blowing you off,” when he cancels a lunch date; he is simply too tired or in too much pain to get out of bed. And that pain might be physical, as when my migraine sends me to a dark, quiet space in hopes that it will pass – or the pain might be psychological, as in when depression does just that: presses me into my bed, into my self, and I can’t function. A helpful response is not to blow up with natural frustration, but rather to send, perhaps, a text asking what would be helpful. Sometimes chicken soup works. Sometimes just knowing someone cares is enough.
