Living with HIV

Noaks Ark supports all people living with HIV, their close relatives and friends, and others who need support in order to manage a life situation affected by HIV. You will always meet personnel and volunteers who have extensive knowledge, experience, and commitment.

You who are living with HIV are always welcome to expand and deepen your knowledge here with us at Noaks Ark. Take part in our activities and lectures or contact us for support and advice. Keep an eye on our website and follow us on social media to find out more about what we do and the different activities we offer.

Activities for those living with HIV or those close to them

A Noaks Ark association is for many an oasis, a place to meet, a safe space where you can meet other people in the same situation, participate in activities or just feel a sense of belonging free from secrets, prejudices, and discrimination. We have activities for everyone, regardless of your situation. 

What we offer

• A knowledge hub for those who live with HIV, are relatives, or professionals
• Individual advice and support calls
• Knowledge-enhancing lectures and themed evenings
• Health-promoting activities such as Body & Spirit weekends for those living with HIV or those close to them

Learn more about what it can be like to live with HIV

What is it like to live with HIV today? Together with us at Noaks Ark Göteborg & Västra Götaland, you can learn more about HIV, what it’s like to live with HIV, or what it’s like to be close to someone living with HIV. We can help with this and much more. Click around on our website to get more information. We have gathered all the important information about HIV, STIs, and sexual health.

Is there any information or activity missing? Feel free to contact us with your ideas and thoughts.

Support, advice, and conversations

We at Noaks Ark encounter different people’s thoughts about HIV, sexuality, and relationships every day. If you want to meet someone to talk to about HIV, you are more than welcome to visit us at Noaks Ark Göteborg & Västra Götaland. You can call us to make an appointment for a conversation, you can chat with us, or email us. You do what feels best for you. It is always possible to remain anonymous when contacting us.

If you want to meet others who are living with HIV, you can participate in one of our discussion groups that we regularly organize here at Noaks Ark. Discussion groups such as Body and Soul. You can also get help in contacting authorities, for example, the social service or the Swedish Migration Agency. We are here for you.

Living with HIV today

Living with HIV today is different from how it was 20-30 years ago. Through research, many advances have been made and one of the biggest differences is that today, there is effective treatment for HIV. The treatment means that you take medicine that lowers the amount of virus in the blood so that the virus can no longer be transmitted. The amount of virus becomes immeasurable and therefore also non-transmissible.

Thanks to today’s effective treatment, HIV has gone from previously being a fatal disease to being a chronic infection. Most people living with HIV in Sweden today have effective treatment, which means they have good health and live a life like many others.

Recently diagnosed

Emotional state

Getting your HIV diagnosis can be overwhelming, and it can be difficult to accept the news. There are many emotions that can be difficult to handle. It is important to know that you are not alone and that you do not have to deal with your diagnosis alone. There is help and support available. Family and friends are good support, but if you don’t feel ready to talk about it with those closest to you, there are other ways to find support. 

We at Noaks Ark are here for you, contact us.

Medicines

After receiving an HIV diagnosis, regular contact begins with the infection care service at a hospital. You will meet a doctor, a nurse, and a counselor for treatment and support. It can be a good idea to bring a relative or a good friend with you on your first visits.

The treatment for HIV used in Sweden today is very effective and reduces the amount of virus to unmeasurable levels in the blood. This means that damage to the immune system can be prevented and that life expectancy need not be affected in people living with HIV who get access to treatment in time.

The goal is to start HIV treatment early so that damage to the immune system is minimized and complications are avoided. The treatment is particularly beneficial when it is started shortly after the time of infection. At that point, the virus has not had time to infect to many cells in the body and no serious damage to the immune system has been done.

Virus levels, immune system, and adherence to treatment must be followed up regularly, which usually means seeing a doctor two to four times a year.

Today’s modern HIV medicines generally have no or mild side effects, and usually, the side effects are temporary. In order to slow down the virus production the best way, you will receive a combination of several different antiviral drugs. Your doctor is responsible for finding the best combination. 

Today’s effective medical treatment against HIV has led to a drastic reduction of morbidity and mortality for people living with HIV. The treatment affects the infectiousness both for the individual, but also the spread of the infection in the population. Modern HIV drugs are very effective and usually have no or only mild and usually temporary side effects.

Knowledge about HIV increase well-being

While research regarding HIV has made progress and been a major part of developing effective medical treatments against HIV infection (which means that HIV is no longer transmitted through unprotected sex), the knowledge about HIV remains low in society. Many times, public attitudes are still characterized by an outdated and outdated view of HIV, which contributes to stigma and discrimination.

“Stigma means that a minority group in society is singled out and attributed derogatory and stereotypical characteristics.”

(FOHM)

There are three types of stigma:

1. Perceived stigma/discrimination.
2. Anticipated stigma; the individual expects to experience prejudice and discrimination from the outside world
3. Self-stigma; the person living with HIV has incorporated the outside world’s negative beliefs and feelings connected to HIV that he becomes his or her own internal oppressor. This can come in the form of guilt, shame, hopelessness, self-recrimination, self-loathing, and self-depreciation.

There are four different types of HIV stigma

1. Anxiety about sharing the infection; questions about telling or keeping the HIV infection a secret.
2. Concerns about public attitudes towards people with HIV.
3. Negative self-image related to one’s own HIV infection; to feel guilty and feel less worthy.
4. Personal experience of stigma; experience of losing friends or people distancing themselves because of one’s HIV infection.

Anyone who wants can get access to effective HIV drugs here in Sweden. This means that the life expectancy of those living with HIV can be the same as that of people who do not have HIV. Despite this, many people living with HIV may experience both self-stigma and HIV-related stigmatization. Negative self-image, special treatment, feelings of hopelessness, mental illness, psychological side effects, and worry about how those around them will react to one’s HIV infection are also some of the feelings that people living with HIV have reported experiencing.

If more people have more knowledge about HIV, it is a step in the right direction toward reducing negative feelings linked to HIV. This can have an effect on, for example, self-esteem, sex life, and the ability to start new relationships, have children, travel, or choice of work/career. Simply, to be able to live like anyone else.

(Source: FOHM)

It is important to speak openly about HIV and to spread knowledge. A good first step after the diagnosis is to read about HIV and contact us at Noaks Ark who have knowledge and experience about HIV and who meet people living with HIV in our daily activities.

To tell

At first, there may be a feeling of uncertainty, fear, or concern about sharing one’s HIV diagnosis. According to surveys conducted, many people who are living with HIV have told at least one close relative about their diagnosis. Almost one in five have not told anyone at all and only a few are completely open about their HIV diagnosis.

For some it feels natural to tell and talk about their diagnosis and for others it is much more difficult. Regardless of who you are, you don’t have to tell anyone if you don’t want to. Employers, schools, or universities do not need to know. It is only in specific situations that according to the Infection Protection Act you have an obligation to inform that you have HIV (see section on rights).

It is important that you yourself come to an understanding of when and how you want to tell. Questions you can ask yourself are:

Why do you want to tell?
Only you yourself can know if you want to tell and why. Maybe you can see some advantages in telling? Maybe it would result in more support and feeling safe?

Studies show that people who have told someone in their social environment about their HIV experience that they get the support they need.

How will they react, what do you expect?
Try to imagine how they will react, both positive and negative reactions.

Prejudice and ignorance can lead to people asking questions about how they are affected, such as sexuality or routes of transmission. But there are also people around you who can feel calm and safe, whom you trust, and who will ask questions free of prejudice and discrimination. The most important thing is that you yourself are prepared for the fact that you may encounter different reactions from different people.

Can they keep it to themselves, is it important?
When you tell someone that you are living with HIV, it can be important to communicate how open you are about this and how you want the person who knows to talk about it. Some want to keep it among their relatives, for others it is not a big deal that more people find out. Someone might even want help with telling others.

Some feel relieved to be open about their HIV status and others react just the opposite and isolate themselves to keep it a secret. Think about what you want and what you need to feel good. 

If you need support and help with how to talk to your close ones or are thinking about how to proceed, you are always welcome to contact us at Noaks Ark.

Know your rights

The Infection Protection Act

Chapter 2 § 2 of the Infection Protectiom Act states: “Anyone who knows or has reason to suspect that he or she is carrying an infectious disease is obliged to take the necessary measures to protect others against the risk of infection.”

“Anyone who knows that he or she carries a disease that is dangerous to the general public is obliged to provide information about the infection to other people with whom he or she comes into such contact that a considerable risk of infection transmission may arise.” 

“According to the Infection Pretection Act, it is always the attending doctor who makes the medical assessment and adapts the rules of conduct based on, for example, the risk of infection. Treating doctors must inform their patients of the possibility of having the rules of conduct reconsidered.”

The diseases included in the Infection Protection Act are:

• Hiv
• Hepatitis B and C
• Chlamydia
• LGV
• Gonorrhea
• Syphilis

The duty of information

“Only after a decision from the attending doctor can the person living with well-treated, so-called infection-free HIV, be exempted from the obligation to provide information.”

This means that a person living with HIV and who has a well-adjusted treatment, in consultation with a doctor, can have the obligation to provide information lifted. This means that you do not need to inform about your HIV in situations like visiting the dentist or doctor, or when you are having piercings or acupuncture done.

The care staff’s responsibility regarding the duty to provide information

The new Patient Act means, among other things, that healthcare staff have an expanded and clarified obligation to provide information. The information must be given on the patient’s terms and adapted to individual conditions. The staff must make sure that the recipient has understood the information. The patient must be able to understand the information, be involved and give consent to their care.”

 Read more.

The Discrimination Act

In the Discrimination Act it is stated in Chapter 1 § 1: “The purpose of this act is to counteract discrimination and in other ways promote equal rights and opportunities regardless of gender, gender identity or expression, ethnic affiliation, religion or other belief, disability, sexual orientation or age .”

It is forbidden to discriminate against someone because they have HIV. In the Discrimination Act, HIV is included under the clause that states that you may not be discriminated against because you have a disability.

Support program

We at Noaks Ark Göteborg & Västra Götaland offer support in different ways to those living with HIV and their relatives.

We offer psychosocial support in the form of individual conversations where you can call, chat or email us. Health- and social activities such as Body and Soul weekends with the chance to get away and meet others who are living with HIV. We also have a café where we invite you to meet people who have similar experiences. Do not hesitate to contact us if you need to talk or have any questions. 

Our goal is to create a safe place to meet people who are in the same situation. Here you should be able to meet others living with HIV, people who are close to them, professionals, or someone who just wants to show their support. A place free from prejudice and discrimination, a place for everyone, regardless of situation or affiliation. 

You will find more activities and support programs at our Noaks Ark local associations. Special activities for children and the elderly are also available. Please read more at the sections on activities for children with HIV and activities for the elderly with HIV.   

Do you have recommendations for activities or want to initiate a project yourself? Feel free to email us your idea, no idea is too small or too big.

In close relationship

All relationships are different, which makes it difficult to give general advice on this. Even if some are very close and can talk about everything, it can still be difficult to tell their partner about their HIV diagnosis. If you are in a bad period in your relationship, it can be even more difficult to talk about HIV with your partner. For others, an HIV diagnosis can also be what ties the relationship together even more. We are all different and there are different ways of how and when to bring up your HIV diagnosis with your partner. There is no right or wrong way, but it might feel good to talk to someone outside your relationship for advice.

If you want advice and support on how to tell your partner about your HIV diagnosis or if you have other questions and concerns, you can get help from us at Noaks Ark, your treating doctor, or your counselor.

Well-adjusted treatment – no transfer

A well-adjusted HIV treatment means that the viral level of HIV in the blood cannot be measured during repeated tests, and that the person continuously follows their treatment. If so, there is no risk of transmission of HIV during vaginal and anal intercourse.

Do I have to tell my partner?

According to the Infection Protection Act, you must tell the person you have sex with that you have HIV if you are living with HIV but do not have a well-adjusted HIV treatment. It is called information duty. You do not need to tell a sexual partner that you have HIV if you have a well-adjusted HIV treatment.

The times when you are obliged to tell

Read more under your rights

PrEP

If your partner or someone you have a sexual relationship with is living with HIV and has not yet achieved a well-adjusted treatment, PrEP (Pre-Exposure Prophylaxis) may be an option. PrEP is a preventive medicine to reduce the risk of getting HIV. PrEP is an HIV preventive measure that means that HIV-negative people take a medicine that reduces the risk of getting HIV during sexual contact. By taking PrEP, you can have a sexual partner who has HIV with little or no risk of becoming infected. PrEP does not protect against other sexually transmitted infections or against pregnancy. PrEP cannot cure HIV.

If you are considering starting PrEP, it is very important to get an HIV test first. This is to ensure that you are not already a carrier of the virus. If you take PrEP and carry HIV without knowing it, there is a high risk that the virus will develop resistance. The same applies to hepatitis B as PrEP is also effective against this virus.

PrEP must never replace HIV testing.

As a parent

Children living with HIV

Of all the children living with HIV in Sweden today, almost everyone has an adjusted treatment and goes to the hospital for continuous check-ups. This is done approximately four times a year. A well-adjusted treatment means that the virus becomes unmeasurable and cannot be transmitted.

Children who are living with HIV and have a well-adjusted treatment can live a normal life in good health, just like any other child. In some cases, children living with HIV may face discrimination at home, at school, and in society. If children are taught to understand, accept and talk about HIV at an early age, this will lead to a change in attitude and tolerance for what it is like living with HIV. 

Normalizing HIV and ensuring that adults and children have access to the right information about the virus is important. By being open and talking about HIV and sharing experiences, you can counteract the fear surrounding the virus.

To tell

It can feel difficult to know when your child is ready or mature enough to be told about their HIV diagnosis. As a parent, you decide when and how this should happen. Telling at an early age that your child has HIV can make it easier, while you can get help from the healthcare staff in connection with the hospital visits. 

With age, new questions will appear and you as a parent must be prepared to answer these. Do not let fear or ignorance prevent you from talking about HIV with your children. Contact us at Noaks Ark for support and advice if you need help. We can also give you free print and digital material that you can use to make it easier to talk about HIV with children and young people.

Friend with virus

We offer a collection of print and digital material for children, young people, and adults in the form of books, films, and a web app that connects conversations and facts about HIV in an everyday and imaginative way. The material should make it easier to talk to your children about HIV, regardless of whether it is the parents or the child who has the HIV diagnosis. The knowledge and support that many families seek in conversations about HIV must be available in everyday life. For anyone who needs and wants to talk about HIV; such as in conversations with children, with relatives or friends. 

Read more and order/access the material here.

Activities for children who are living with HIV

The HIV school at Barnhiv Centrum is a camp for all children and young people living with HIV in Sweden. You can learn about HIV while having a fun experience with peers. Travel, food, and activities are free for all participants. For more information visit barnhiv.se/hivskola

Parents living with HIV

Many parents may find it difficult to tell their children that they are living with HIV. It is up to the parent or parents themselves to decide when and how they want to tell the children, or maybe they don’t want to tell at all.

Keep in mind that children are aware of their surroundings and may notice that their parents are taking medication every day and begin to wonder why. Most children appreciate it when their parents are honest with them. Talking to your children about your HIV is a step in the direction of normalizing HIV. To give children the right information and knowledge about HIV, to reduce fear, and to talk about their HIV.

If you feel that your family relationships are becoming difficult as a result of HIV, it may help to talk to someone outside the family. You can contact us at Noaks Ark Göteborg & Västra Götaland, we have extensive experience in supporting families who are living with HIV. 

Pregnancy

With well-adjusted HIV treatment, it is possible to become pregnant or to make someone pregnant without the child or partner contracting HIV. The risk of the virus being transmitted to the child during pregnancy or childbirth is minimal if the person who is pregnant and living with HIV has well-adjusted treatment.

You can give birth both vaginally or by caesarean section.

Breast-feeding

According to the regulations regarding infection protection, women living with HIV are not allowed to breastfeed as there is a small risk of HIV being transmitted via breast milk. Instead, the child receives breast milk substitute.

HIV as you age

What does it mean to age with HIV?

Among people living with HIV in Sweden today, more than half are 50 years or older. They are usually referred to as the first generation to age with HIV.

Although with the help of medication you can lower the level of the virus to the point where it becomes immeasurable, HIV still leads to a low-grade chronic inflammation in the body. Just like other common diseases (such as diabetes), HIV affects the body’s way of dealing with various disease states. People living with HIV have a higher risk of developing certain age-related diseases such as osteoporosis, cardiovascular disease, diabetes, liver and kidney disease, and stroke. In addition, they risk getting the diseases earlier in life.

Because people living with HIV have an increased risk of age-related diseases, it also means that the risk factors for these people become more important to consider. Staying physically active, avoiding obesity, and not smoking is therefore essential.

It is not only people living with HIV who need to take responsibility for their lives, but also society in general. We must increase the resources and knowledge to make life easier and safer for these people. Noaks Ark monitors this area and constantly makes sure to keep us updated with the latest in research and medicine regarding HIV and aging.

Activities 

There are activities for you who are older and living with HIV. Positiva Gruppen and Noaks Ark Stockholm organize meetings under the heading Health & HIV 50+ where they highlight topics such as medication, long-term side effects, sex, desire, and mental health. 

Read more here.

The elderly project – for everyone’s equal right to good aging by HIV-Sweden worked to improve and shed some light on the life situation of elderly people living with HIV in Sweden. A book was also produced, “Living life – Aging with HIV”. The book contains collected life stories with different perspectives on living and aging with HIV.

Download the book here.