TEXT

For me, everything has to do with the body

 SEBASTIAN RUIZ BARTILSON told to JENNY SKÅNBERG

 PhoTO MAJA KRISTIN NYLANDER

The body is the place where I find answers, in several different ways. These are answers that in different ways relate to existing, to being me. For me, it’s not just about the physique and the physical structure that we constantly carry with us. The body is the gateway to our emotions. It is our outermost layer and transports us between our senses and the world around us. It is also the body that connects us with other people.

It is above all through the body that I learn about myself. To experience different kinds of violence, to drink polluted water, to be in a relationship with others; they are all experiences that meet and are manifested in the body. It is about a multitude of dimensions, one of which is to live with HIV. All the different parts are connected, even if we think of them as separate units. HIV means carrying something with you. It is living with a virus that is there in the body and is not really a part of us. We learn to live with it. Then it is important that we have access to information, people and friends.

When I make love or have sex, I am always aware to some extent that there is something in my body that does not belong there. Therefore, I have had to take measures to avoid, for instance, transmitting HIV or getting something else myself and used protection that may lessen pleasure and so on. Everything has to do with the body in different ways.

Despite all the progress and new knowledge about U = U, there is still something there that I take into consideration. Even though I know that the levels are undetectable, it is there. I can have sex with my boyfriend without a condom and feel ah!, but it’s still there.

“HIV is not part of my biology so I have to find other ways to relate to it. I think I’m trying to get hold of the little unit, this being if you can call it that, and hold it tenderly and try to incorporate it into this more complex structure that is me. In other words, it’s about trying to love yourself with all your cells and the viruses that are in them. Because I really believe that, in the end, it is the only way to be happy.

HIV can affect your sex life and your body. But it is also through the body that we can strive to make life richer and better.

For me, it is impossible to imagine another way of relating to people and the world than through my body. Of course, there are other aspects as well, but with each passing day I become aware that the body is central. This is where I find peace.

I work as a dancer and love what I do. But my philosophy is not just about my career and putting effort into developing my body in order to fulfil a purpose in dance. I feel more and more how it tilts towards something deeper, something that needs to be included in all parts of my life. We need to find ways to treat our body in the best possible way and be honest with ourselves.

I see that the body has been oppressed through the history of mankind. This is how the world is built and systems are maintained, through control of other people’s bodies. Slavery. Employment contracts. The way modern society is designed requires us to sit down and be efficient. The military. Even ballet. Everything is based on controlled bodies that serve a purpose. In this way, all bodies have their place in the system.

After an HIV diagnosis, it is easy not to see the future, to have no idea what is coming, to think that everything is over. This is also due to the fact that there is a structure that society demand that we fit into, or else we do not exist. I see it as a kind of violence that we are exposed to every day. We are expected to be loyal to the system, but what if we are not? I see an opportunity there. It can be a painful process to work against it, develop our own approach and move on in our own lives.

For me, the only way to do that is through the body. To go deeper into it, use it to heal and feel better. The answer is in the body, I think. All answers are in the body.

digital story

Love, me

film by the amina

Fragments

Photo

Papa Smurf is based on knowledge & experience

PETER LINDHOLM told to JENNY SKÅNBERG

PhOTO MAJA KRISTIN NYLANDER

 Papa Smurf is the one who represents knowledge and experience in the Smurf community. He is the one who cooks up witches’ brew when someone gets sick, the one everyone goes to when they have problems. Hopefully, Papa Smurf can use his experience to help the Smurfs with their problems. He is also the one who knows the history of the Smurf community. It feels quite nice to be such a symbol. At first, I thought I chose too simple a figure, but then I thought it turned out pretty good after all. I have never been the most cultured, I always felt a little square, but I thought it went well. Then again, I also chose Papa Smurf with a twinkle in my eye. It’s a fictional character and a fictional story, but there might still be something in there that has meaning.

I have lived with HIV for many years, the medications work well and I have no major side effects. It is interesting to live and even if you don’t smile every second, living and existing is pretty good. I hope I can live a long time, be healthy and see what happens in the world. It is wonderful to be alive and to take part in what is happening. The longer you live with your HIV infection, the more it naturally becomes a part of you. Even if it is not natural to have HIV, it becomes a part of you whether you want it to or not. I think that you relate to HIV in a way that makes you relax, or at least to the point that it is no longer an acutely stressful situation.

I have been asked sometimes, how were you before you got your HIV infection? I was diagnosed with HIV when I was 23, what can I say? When you have lived with it for so long, it is difficult to know what it was like before. HIV has woven itself into me over the years. HIV is a part of me, I can’t exactly separate it. It’s definitely not my whole being but it’s there and life goes on around me anyway. HIV doesn’t affect every little bit, but is simply a part of me. It’s been around for so many years, it’s just there, it just is – the same way I just am.

I was not really open with my HIV status to begin with but then I became more and more so. For everyone else who does not have the strength, ability or will. There are still people who are almost terrified to talk about their status and you can’t mention how you know them outside HIV contexts. They remind you of how difficult it can still be. For some, this is their reality, surrounded by people who show very little understanding. It makes you realise that we still have work to do.

Papa Smurf is quite well-read and likes to do things based on experience and knowledge. That you actually know how things are and don’t just go on what you believe. I’m a bit nerdy myself and think it’s important to not just guess but to try and get the facts before I make a decision or do something. I like to be well-read, so maybe there’s a bit of Papa Smurf in me. I’m not as old as he is, but I am turning 50. After all, I’m not 20 anymore and I have managed to get a little grey-haired beard. I’m getting closer.

I would like to pass 90 but preferably without dementia in the end. I want to have a clear mind. Not being able to walk so fast is one thing, but I want my memories to remain as long as I live. To be able to live a long life. That has been worrying me in recent years. How will it be? Will I be as old as I would have been if I hadn’t lived with HIV? I hope so, but there are some indications that it is not quite 100 percent like that yet. But there are no guarantees in life, that’s just the way it is.

Papa Smurf knows that he will not live forever. He’s probably thinking about who will take over and become a Papa Smurf after he’s gone. He is probably a little worried, cares about his Smurfs and wants them to do well - he feels responsibility and love for his Smurf village, that’s what I think.

WORKSHOP: IDENTITY, STAGE & PORTRAIT. What identity do you long to express? This was one of the basic questions during a two-day workshop organised by Positiva Gruppen Väst last year. We got to pick and choose props and clothes at Sakcenter and Göteborgs Kostymförråd and then staged our own portraits in a photo studio at Konstepidemin. This is one of the six portraits produced.

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It’s fun to be your own best friend

text elisabeth flodin

Photo Maja Kristin Nylander

In 2000, I received my HIV diagnosis and then wondered who I would become. Who would like me when I didn’t even like myself? Maybe I could meet someone who could stand me, preferably of the opposite sex. It had never been a problem to meet someone before but now it was completely different. Who would want me with this deadly disease?

Anyway, I met someone and, after a couple of weeks, told him I was living with HIV. The person said it was okay but that he didn’t know much about it. I told him everything I knew and brought him to see my doctor. In retrospect, I understand that I had such poor self-esteem and low self-confidence that I jumped at the chance of a relationship to avoid being alone. What I was hearing was: Who else could you have gotten? At the time, I accepted it and stuck to that idea for many years. I hid a lot behind the relationship.

I have been living alone for the past couple of years now, which is the best thing I have ever done for myself. It has been and continues to be an awesome journey. Today I feel that I am good just the way I am and it is interesting to see what that does to me. Of course I hope I find love but there’s no hurry. For me, it has taken many years to reach these insights, but better late than never! I believe that insight comes differently to all of us. I took this path. Now I feel that I am evolving every day. It’s fun to be your own best friend.

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About the importance of talking about side effects

Text Joakim Berlin

Illustration Hilding sandgren

The body is affected both by HIV and by your treatment, but it is also very individual. There are some things that can be good to think about.

Before treatment

One important thing is to remember how you felt before you started taking your medication. Think about and write down how you felt in your body before you got HIV and before your treatment. It is difficult to remember so it can be good to do this before making a change. How do you feel otherwise? For example, do you feel stressed at work? Or are you perhaps isolated and mostly spend time alone at home? It is good to take it a little easy and have a functioning everyday life when introducing completely new medicines.

In the beginning

The most common effects when you begin taking HIV medication are nausea, vomiting, headaches, diarrhoea and possibly effects on the kidneys and liver. The staff follows up on how you are feeling, so it is important to talk to your doctor and nurse about this. Are the side effects going away or not? If you have problems, it is important that you go to your clinic for a follow-up and maybe even switch medications after a few weeks.

Further on

Then there are long-term side effects that appear over several years. They creep in and can be difficult to detect. These include reduced fat accumulation on the arms and legs and the accumulation of fat on the abdomen or neck. This was more common before but can still happen today. Treatment can also affect the nervous system which can cause pain. In the case of some of the effects on the body, we do not really know if they are due to the virus or the medication. People living with HIV have a higher risk of osteoporosis and common diseases such as cardiovascular problems.

You are not alone

The most important thing is that you talk to your doctor. If you feel that you cannot deal with it on your own, you can contact us at kontoret@pgvast.se

 We can help you reflect and give you support. We can also be a support before a doctor’s visit and sometimes even accompany you to the doctor. It can feel easier if you are not alone. We must remember that the vast majority do not get any major side effects, but it is important that we take the problems that do come up seriously. Of course, it is different for different people and at which point you encounter problems can also vary. Life goes up and down.

AUdio

Let's talk about sex and the body

with sebastian

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Over time, something new has emerged

text anonym

I got HIV about ten years ago. It came as a shock to me. I can’t very well have the virus? HIV is still stigmatised and for many people, there is a great lack of knowledge. I thought that it could only happen to other people.

After the news came a chaotic time with millions of thoughts and questions. Fortunately, PG Väst was there, a non-profit support association that helped me during the most traumatic and troubled times. I thought I had been through most things in this life with divorces, several different jobs and the setbacks that most of us face during the course of our lives, but then I had felt calm and stable. The HIV diagnosis made me insecure and I fumbled about in a void. An intense time began with new questions and thoughts. What would life become in the future? How would it be with new relationships? Should I tell crete and pleti? My mind was spinning and, at that moment, I had no answers.

In time, everything calmed down. I attended conversation circles and listened to other people’s stories and experiences and realised that most people had similar experiences and feelings. I ploughed through a lot of literature on the subject and felt that I was growing inside. Many questions were transformed into an inner security and calm. I had gone through a process and felt that I had grown as a human being. Life had taken on a different dimension. I noticed that I began to rejoice over simple things, a nice day, a relaxing evening in front of the TV, to simply exist. Now I live a quiet life and rejoice in every new day. I know I have been through something difficult, but with patience and processing, something new has emerged. Today I am calmer and more aware than before. It feels like a new identity.

Fragments

 Text

In short, the body gets tired

 Text anonym

Becoming aware of the side effects of your medications is not entirely easy. They can often be perceived as diffuse and be mixed up with many different effects that come with HIV and life’s puzzle itself.

I have always been a tired person. I’ve never had a hard time sleeping for twelve hours and I’ve always felt rested afterwards. Although I like to juggle a lot of different things, I haven’t been very stressed. That was my life before I got HIV. Getting HIV is an existential stress in itself. But it also affects the body very physically. In short, the body gets tired. This was my experience after I got HIV. I never felt completely rested even if I felt balanced mentally and things were calm around me. Fatigue is one of the things I have felt the most. What the disease and drugs do to our health in the long run is another matter. I talked to a doctor about my fatigue and described my life in general. They said it’s not strange that I experience fatigue. HIV is a chronic viral infection and the body takes a beating. In addition, they told me that a symptom of one of my medications is never feeling rested, a huge tiredness.

When I started with my treatment, they measured the concentration in the blood to see how much of the drugs remained after a certain period of time. I broke mine down at a furious pace and was therefore put on a double dose of Stocrin, 1200 mg. In short, a “horse dose”. It was no wonder that I felt tired, slightly drunk and speeded two hours after taking my tablets. It went damn fast to bake buns in the middle of the night when I was working as a baker, that’s for sure. I stayed on this dose for about ten years until I myself asked if they could halve the Stocrin dose and see if the effect remained. The medication worked well and I had gotten used to the side effects, they didn’t bother me. I also did not want to change for fear that I would get worse problems with new drugs.

I was actually a patient

It was lucky that I took my responsibility, even though it should be up to the healthcare system to have knowledge and insight into the drugs’ synergies and effects. I was actually a patient. I also take Truvada. It is a good drug but my kidney function has deteriorated due to the medicine. However, it does not have any serious effect. If I were to replace the drug, my kidney function would return to normal. Now, 14 years after being diagnosed with HIV and taking drugs, other side effects have crept in. You get used to these insidious feelings, until one day when, for example, you have to massage your feet thoroughly before you can really put them down and walk. You feel like your soles are being pricked by needles out of nowhere, because the nerves have gone haywire. Suddenly you don’t feel like getting out of bed but just want to stay under the covers for a month because you feel “low” for no reason. What is what and what’s the reason behind it? It is difficult to say sometimes when healthcare and researchers do not yet have all the knowledge about what side effects the medicines give. One thing is clear. I am 34 years old now and it has already started, it makes me reflect on how my old age will be ... Because I will get side effects regardless of the medication. A tip, however, is to ask the doctor if what you are experiencing may be a side effect and what can be remedied. But do not read the package leaflet... By and large, HIV and medicines affect one’s whole life, the small and the big things. Despite the fact that the majority of people do not have that many side effects that they can’t live with. The fact is that HIV is an illness, but with many consequences. If it is not stigma or self-stigma, it is a side effect of the medication. I am incredibly grateful for my elephant-thick skin, my sarcasm and my tools in everyday life: the ability to turn the negative into something positive, from a realistic perspective.

editorial

HIV does something to your identity

text jenny skånberg

How you relate to HIV says something about you as a human being. How society relates to HIV does something to you as a human being. Is it nicer or uglier to have made HIV a part of one’s identity compared to not having done so?

HIV is not a neutral diagnosis to get. Desireé Ljungcrantz shows in her research that HIV is not perceived as completely undramatic, HIV positivity is not “something we are but something we become and do”. HIV is not just a medical condition but something that is created in the meeting with society, institutions, legislation, people, beliefs, norms and attitudes. It affects the experience of and the room to manoeuvre with HIV.

What opportunities are there to be ourselves after an HIV diagnosis? Getting HIV is often associated with being promiscuous, immoral and norm-breaking. Does it matter if you actually are? Many people living with HIV feel that there are demands from society for them to disprove these notions in order to be accepted. The distance that society still has to people living with HIV can also manifest itself in demands for silence and discretion, says Ljungcrantz.

“I wish that a liveable life with HIV would not have to mean a total embrace of HIV as an identity, or a distance to the experiences that an HIV diagnosis can entail” - Desideria

HIV has often been associated with something deviant, risky and ugly. To keep feelings of shame and fear away, one strategy can be to avoid HIV; to keep it as far away as possible. However, “deHIVfying” life can spread HIV more and more, according to Ljungcrantz. “Avoidance includes an exclusion from one’s own experiences, a part of the self.”

“I wish that a liveable life with HIV would not have to mean a total embrace of HIV as an identity, or a distance to the experiences that an HIV diagnosis can entail,” writes Ljungcrantz’s alter ego Desideria.

Identity can be about how you experience yourself and how you are defined by others. The identity consists of a number of different characteristics, some that we cannot influence and others that we choose ourselves. One’s identity is formed throughout life and different parts of it can take varying amounts of space at different times. Who you are is constantly evolving. But some events in life are more crucial than others.

When people get a chronic illness, no matter what it is, feelings of loss and change are common. It can mean a “biographical break” - something happens to one’s identity. It is further affected by the experiences you get from actually living with the disease. There are different models for understanding what effect it can have on us humans and there are of course a number of factors that come into play - what diagnosis it is, what you as a person carry with you from before and the social context. Getting and living with a chronic illness is not something that happens in a vacuum.

In the article Accepting Being Poz, Baumgartner and Keegan show how one’s HIV identity is integrated in a three-step process. When a person receives their HIV diagnosis, something happens to their self-perception. Common reactions include shock and fear which are then followed by sadness. The turning point, according to the study, comes when one is somehow forced to face the disease, often within a year of diagnosis. It could be by learning about HIV, getting support from others or starting treatment. With knowledge, others to share it with and/or treatment, the approach changes and HIV comes closer to the self.

However, for the participants of the study, HIV identity never becomes central, more than possibly for a few days or weeks. Instead, it is another part of yourself that you bring up to describe who you are. For many, it oscillates between being in the foreground and the background. Health - how well you feel and whether you notice illness or medication - is often decisive for how prominent HIV becomes. The time, how long you have lived with HIV, also has an effect. Because it is a chronic illness, one can learn to live with it gradually.

Ljungcrantz writes about HIV thresholds, occasions in life when HIV becomes apparent, when you are made or make yourself HIV-positive. These are important for the perception of the self. These are everyday situations that are more than the events that Accepting Being Poz addresses - during “menstruation, emergency or dental care, cooking, HIV treatment, flirting, gossiping, family dinners, going to the pool, wounds, an evening alone at home or going to the park”. Emotions help to create “the HIV-positive self”.

Words also play a role. Both how you and others express themselves. According to Ljungcrantz, words can cling to the body: “The co-creation of healthcare, law and words partly shapes the ‘HIV-positive’ body and the self”. Quite simply, it matters if we say HIV-afflicted, HIV-infected, person living with HIV or HIV-positive. The names, prejudices and ignorance of the environment often affect the self-image negatively. And there is a direct correlation to lower quality of life, according to the Public Health Agency’s study Living with HIV in Sweden. According to the survey, one third, 36 percent, have a largely negative self-image due to HIV.

HIV also changes other identities linked to such things as work, social commitments and faith, according to Baumgartner and Keegan. Priorities change, other parts of who you are become prominent. Health considerations meant that many participants in the study were looking for less strenuous or more meaningful employment. HIV also strengthened the perception that you are not what you do. Such changes are not uncommon, but relatively unique, for people who are faced with something potentially life-threatening.

HIV affects how one is in relation to others, which can have major consequences socially, family-wise and sexually. This is also where the degree of openness comes into play. How open you are with your HIV status affects your identity in general.

Is it easier or harder to live with HIV in Sweden if you are Swedish? White? Heterosexual? Middle class? Cis-person? Have a partner? Are perceived as healthy? If you can pass as normal?

HIV affects a variety of groups and identities. Notions about certain groups affect the perception of HIV and the notion of HIV affects the perception of certain groups. Identity is a complicated issue. A person never belongs to only one group and it is not certain that you identify yourself as others categorise you. HIV has been turned into an issue of safe and unsafe identities; HIV is associated with “the others”, groups that are separated from “the general public”. In her research, Ljungcrantz returns to “boundaries of normality and norm lines for health, sexuality, gender, gender identity, racism and class”.

When HIV gets space in the media and cultural contexts, the same images are often reproduced of who has HIV and what it means. Some stories are given space and others are not. When those kinds of associations are made over and over again, they become difficult to dislodge. Ljungcrantz writes that HIV has “sticky connections” and the effect is “tedious”. It also affects the self-image. Who am I living with HIV? How do I relate to the stereotypes that exist? Getting HIV is not just something medical but highly social; it can be a dramatic and painful process. What it does to one as a human being is not known.

Fragments

digital story

Sadness

the amina