December 1 is World AIDS Day. To stop the spread of the disease, general awareness must be raised. Therefore, more and more often stars, media people, bloggers talk about their diagnosis. What does the status “HIV-positive” mean and what to do if you or a loved one is faced with this diagnosis?
“I felt terrible, suffocating guilt”
Maria Godlevskaya, blogger, activist, peer consultant of the association of women living with HIV, E.V.A.
I am in charge of coordinating prevention programs for the human immunodeficiency virus. And today, within the framework of the “I’m not ashamed” project, I’ll tell you why it’s not a shame to live with HIV, how to do it fully.
Today in Russia, people with HIV-positive status still face stigma. I remember how back in 1999, together with my mother in the doctor’s office, I found out that I had HIV. To say that I was afraid for my mother is to say nothing. I let her down, the voices in my head said in different ways. I felt suffocating, terrible guilt.
I was very lucky in the first days of life with the virus. The key event of that time, I consider the consultation of the attending physician, who talked with me and my mother about the diagnosis, and not about the limitations associated with it. I remember her words: “You can do everything, the main thing is to come to the AIDS center from time to time and do not start the disease.” And my mother was told that I did not pose a danger to herself, to her career. It was important for both of us to hear.
Later, I learned about what people with a diagnosis of “HIV” go through, and was amazed to the core. There are discriminatory laws prohibiting people with HIV from adopting children, and criminal liability for entering into close and intimate relationships (“Knowingly placing another person at risk of contracting HIV infection”). Two people have sex, and the responsibility falls entirely on the shoulders of a person with a diagnosis. To this day, people with a positive status are often denied medical care, work, study, and military service.
Now, as then, many years ago, people with HIV are afraid, ashamed, ignored, offended, blamed for having this diagnosis. The whole system shouts to a person: “You are dirty, bad, unworthy.”
I wanted to convey to the minds of people with a positive status an important message: “HIV is a diagnosis, not a characteristic.” By ceasing to stigmatize oneself, a person acquires opportunities for growth, development and a fulfilling life.
I went to work for an organization of people living with HIV. After completing the training, I consulted and now advise those who have just found out about their HIV-positive status. I share knowledge about how they can protect themselves from attacks and injustice. I’m talking about my own experience of a positive – in every sense – life.
“Living with HIV – live happily”
Svetlana Izambaeva, psychologist
When a disease appears in a person’s life that cannot be cured, everything changes. But this does not mean that now it is impossible to live happily, richly and meaningfully. This is possible, but it requires effort and a certain restructuring – attitude towards oneself, outlook on the world, organization of life. Especially if there is an indefinite number of possible crises, stresses, deterioration ahead.
What can help people adapt to life with illness, reduce the amount of suffering – on a physical, psychological and social level? Support from health professionals, relatives, people with a similar diagnosis, counseling from a psychologist and a peer counselor (a person living with HIV who has received special training in counseling and is familiar with the medical aspects of HIV infection).
What are the characteristics of HIV?
- No symptoms in the early stages. The first difference between HIV and other chronic diseases is that in the early stages there are absolutely no symptoms. Only an HIV test can confirm or disprove a person’s infection. I have been counseling people living with HIV for 10 years now, and I know many stories – both joyful and successful, and bitter. Sometimes, fortunately, after learning about their diagnosis, people radically change their lifestyle for the better. These people are very different, but they are united by their own love of life and the support of loved ones, for the sake of which they want to act.
- Stigmatization. The second difference between HIV infection and other diseases is stigma (“stigma”), a set of stereotypes about the disease. Stigma most often injures a person both from the inside and outside. The fear of condemnation, rejection, rejection makes him keep silent and not tell anyone about his diagnosis. It happens that he himself cannot build a relationship because of this fear, or he himself leaves work, fearing publicity. Often women become infected with HIV from their spouse and experience humiliation, they are afraid of publicity. The internal stigma is reinforced by the external. When people with HIV are treated as outcasts, they have to cope with discrimination, and for this they need to have enough internal strength and external support. Fearing shame, people do not seek medical attention, do not take life-saving treatments, and may eventually die.
Adaptation to HIV infection consists of four interconnected cycles. Each life crisis and health crisis brings us back to the experience of the first or second cycle, even if we have long “settled” in the third or fourth.
1. Crisis
During this period, a person learns that he has HIV. Shock, denial, fear, anger, guilt… He faces many medical and social problems. And that’s when it’s easy enough for a person living with HIV to believe “AIDS dissidents”. This is because, in general, everything is the same as before, nothing hurts. And the psyche tries to protect itself and begins to deny not only the diagnosis, but also the existence of HIV infection as such.
But, as practice shows, there are not so many true “dissidents”. Basically, these are people who could not get comprehensive answers to their questions and were not accepted or even condemned by medical professionals or society.
Most of those living with HIV actively seek information about the disease during their first cycle. Some seek spiritual enlightenment or solace. Others try to defend themselves against the realization of the severity of the situation with alcohol, drugs, or promiscuity.
During this period, the task of the patient, their loved ones, and the medical support team is to deal with the immediate trauma and loss associated with this disease.
2. Stabilization
A person living with HIV has already learned enough about the infection and the severity of the symptoms and is experiencing sadness, sometimes mixed with anger. During this phase, people most often try to continue living the way they lived before the disease. And this leads to deterioration and exacerbation, which are experienced as failures, failures.
The task of the second cycle is to stabilize a relatively good state, to restructure the attitude towards life itself, to organize it. Support groups come to the rescue during this stage.
3. Challenge and transformation
In this cycle, a person may be in a stable state, or may experience exacerbations. He understands well how his illness behaves and how the world reacts to it. Here he has to finally admit that it is impossible to live as before the illness, and in any case, you need to take the medicines prescribed by the doctors.
The task of the third cycle is to find or create a new authentic self, to find a new personal philosophy that helps to live meaningfully in the circumstances.
4. Integration
During this cycle, an HIV-positive person may be stable, but may experience flare-ups. The main difference is that during the fourth phase, a person manages to build into his current life those aspects of his “I-before-disease” that are valuable to him.
The actual task of this period is to find ways to express and embody a new, “better version of yourself”, rebuild the circle of communication and support, or find a new one. Find a suitable job, other meaningful pursuits, push your limits and build a philosophy or spiritual tradition into your life experience.
A successful solution to the task of the fourth cycle is a happy life in which illness is just a part of it, although significant, but not the only important one.
***
I always write: living with HIV – live happily. And this means living consciously, choosing the path from adaptation to illness to an independent, successful and happy person. Yes it is possible! You can verify this by reading the stories of the heroes of the project “I’m not ashamed”.
For my part, I once again want to remind those who are faced with a diagnosis: seek support and everything you need. In every city in Russia there are AIDS centers and NGOs where they are ready to help you.
About expert
Izambaeva Svetlana — clinical psychologist, certified Gestalt therapist, member of the E.V.A. Association, founder and head of the Svetlana Izambayeva Foundation (helping children and families living with HIV in Russia). Her .
The article mentions the stories of famous bloggers published as part of the project “I’m not ashamed”. Its participants tell how they found a way out of difficult life circumstances. Among the issues covered by the project:
- bullying (in childhood and adolescence);
- physical and psychological abuse in a family or romantic relationship;
- the struggle of a person with his alcohol and drug addiction;
- co-dependency in a family in which there is a person with alcohol or drug addiction;
- living with HIV.
The project was attended by: Yulianna Karaulova, Dana Borisova, Maryana Ro, Milana Tyulpanova, Roman Kagramanov, Sveta Ugolyok, Alena Pogrebnyak, Arseniy Borodin, Elena Khanga, Maria Ivashchenko, Ladislav Bubnar, Lyubava Greshnova and others.
All stories can be found at project “I’m not ashamed” on Instagram and by the tag #I’m not ashamed2020 in social networks.
“I’m not ashamed” is a social initiative calling for living without pressure, shame, mystery and trauma. Opinion leaders share their stories and show by their own example that anyone can find themselves in these situations: it’s not a shame, there is always a way out.