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Living with hiv

New with hiv or already been positive for some time? Here you´ll find information and advice on how to live well with hiv

Topics

Laws & Rules

Sweden has certain laws and rules for people living with hiv. The law gives you both responsibilities and rights, and is applied differently depending on if you are well treated or hasn’t started treatment for hiv. If you have well treated hiv (välinställd behandling), the obligation to use a condom when having sex is removed. If you are treated for hiv in Sweden, your doctor should inform you exactly what rules you need to adhere to. If you haven’t had this discussion, talk to your doctor and discuss, that way you’ll be empowered and in the know of your rights.

For more information, see the infectious disease leaflet on hiv which guides and gives recommendations to the doctors at the infectious disease clinics.

Do note that there are two leaflets, one for well treated hiv and another one for untreated hiv/non-undetectable hiv.

For further reading on the topic, also see the Public Health Authority and the publication smittsamhet vid behandlad hivinfektion

Both of these links are useful if you want to inform someone about risk of transmission of hiv and provide them with reputable Swedish sources.

Well treated hiv (välinställd behandling in Swedish) is a term used in Sweden to determine if there is any risk of transmission. The criteria to fulfill well treated hiv is:

  • Viral load should be continuously undetectable, this should be confirmed and documented with a minimum of two tests of 3-6 months apart.
  • You should be considered to be able to follow your treatment protocol to a high degree

Both yes and no. For those with well treated hiv, there is no obligation to disclose when having sex. However, if you just tested positive or haven’t fulfilled the criteria of well treated hiv, there is an obligation to disclose both when engaging in sex and in other situations that carries a risk for transmission, such as for example medical procedures.

If you have well treated hiv, there is no obligation to use a condom when engaging in anal, oral or vaginal sex. Using a condom could thou protects yourself from other sexually transmitted diseases such as chlamydia, hpv or gonorrhea.

Sex

Sex is still a sensitive topic surrounded by taboo. For many, talking about sex can be uncomfortable. Adding hiv into the mix makes things even more difficult, but it hasn’t have to be like that.

Questions about sex are common and maybe the most talked about topic for people living with hiv, but also for people not living with hiv. For people living with hiv, sex can be regarded as stigmatizing, there is always a risk to be rejected and labelled if hiv and sex comes up. Disclosing ones status also risks rejection, and a feeling of being dirty, unwanted and unworthy of sex. In Sweden, a large study of more than 1000 people living with hiv researched quality of life by looking at a wide range of topics. Overall people were fairly satisfied with their lives, but rated at the bottom was sex life, which shows that sex is both important and not on equal terms with people not living with hiv.

The study was conducted in 2015, and since then things have changed. The obligation to disclose is removed for people with well treated hiv. The change was largely an effect of the ruling of the Swedish supreme court in 2018 when a man was acquitted for “creating danger to another”. The man was living with well treated hiv and had several unprotected sexual encounters with different women. In effect the court ruled that its not possible to be charged for such a crime when there isn’t a risk to create any danger (to risk to transmit hiv). But despite that the legal burden have eased, stigma is still prevalent. Stigmatization hampers the possibility for people living well with hiv and puts a burden on those disclosing or living openly with hiv. This results in risks of internalized stigma, a lower quality of life and possibly issues with self worth. To talk with other people living with hiv can help. To share experiences and help and support each other can improve the prospects of living well with hiv.

If you are about to have sex, with or without a condom, and you have well treated hiv, there is no legal obligation to disclose.

There is no right or wrong. Vissa vill berätta så fort de får chansen, andra väntar. I slutändan är det ditt beslut. Vill du ha någon att prata i den processen finns vi till för dig.

Remember, you are not hiv, you are living with hiv.  Starting with accepting yourself for who you are, this will create a steady foundation to build on and make others feel that you are on terms with yourself.

Travel & living abroad

It has become easier for people living with hiv to travel, live and work in other countries. In 2010 USA removed the ban on people living with hiv entering USA. Singapore followed suit in 2015 and took the same decision. Two encouraging examples in the last decase.

Travel as a tourist is generally not a problem and fairly few countries prohibits tourists entering the country on the basis of a positive hiv status. The countries that do have restrictions for people living with hiv are found in the Middle East, but also Russia do have restrictions in place for tourists with hiv. Without going too much into country specifics, shorter travels are in general easier than longer stays requiring visas and in some cases even health insurance. Transits and short layovers are seldom any problem, even in countries with restrictions.

Its good practice to thoroughly read up on the countries that you plan to visit. Entering the country is one thing, traveling and living in the country another. For example, certain states in the US still have harsh criminalization laws and hiv related crimes and not disclosing ones status are punishable with jail time, in some cases many years.

Working permits and permanent migration is more often than not rather complex. Most countries do not impose any particular restrictions, Australia and New Zealand being notable exceptions.

Visit https://www.hivtravel.org/ for country specific information. Do note when information was added or updated, changes do happen, often for the better and not all countries are up to date. Another advice if you are searching for country specific information is to contact an hiv organzation in the country you plan to visit and ask them for more information.

To prevent your medicine getting lost in baggage handling, travel with your medicine in your carry on luggage. Its advisable to keep the medicine in the original container together with the prescription label, in the case of a security check. You also might want to keep some of the medicine packed in two bags. Should one get last you will at least have medicine for the time being until you can arrange more or wait for the bag to be retrieved.

One or a couple of days without your hiv medicine is rarely a disaster,but in such a situation, contact your doctor for medical advice. If you are without for a longer period, try to contact a local hiv organization, they might have an emergency stock, or could help you get in contact with a local infectious disease doctor/pharmacy.

Aging

Aging can enrich us with wisdom and experience but also require us to care more for our health in order to prevent disease and illness. People diagnosed with hiv today will likely not face the exact same issues as longtime survivors whom have lived with hiv for 30 years. We also have differences among us, both in terms of reactions to hiv and how we respond physically to the treatment. To live into old age with hiv is largely a chapter still being written.

In general though we know that commodities are higher and earlier onset of aging-related diseases are more common in people living with hiv. This will become an even more important topic, as people living with hiv continues live longer into old age, already today the majority of people with hiv are more than 50 years old.

A Swedish study from 2011 followed all people with hiv between 1996 and 2011. The study confirmed higher than average commodities and a threefold risk for premature death, compared to the general population. On a positive note, many of the diseases can be avoided or manager with fairly simple lifestyle changes such as smoking cessation, exercise and a good dietary plan. A good starting point is to discuss holistic health with your doctor, talk about the lab results, how to monitor your overall health. Its never to late to start living more healthy and the sooner your start, the better.

Diabetes type 2, high blood pressure and cardiovascular disease are common age related disease for people living with hiv. There are also certain non-aids defining cancers, liver and kidney disease among people living with hiv. It should be noted that these diseases are also commonly found in the general population, the difference being they statistically are seen 5-10 years earlier in people living with hiv.

The advice given to all people to sustain or improve their health also goes for people living with hiv, such as keeping a good diet, exercise and limit smoking and alcohol as well as having a social support network. Be proactive in the dialogue with your doctor and make use of the resources available. Learn about your body and listen to your body.

Life expectancy today is for people living with hiv close to normal. There are people well into their 90´s and even some over a 100 years old living with hiv, some of these people have lived with hiv for more than 40 years. Taking care of yourself and adhering to treatment is the cornerstone to a long a healthy life.

Mental health

With time, treating and managing hiv has become easier. From a medical perspective the advancements are close to incredible. However, stigma, shame and discrimination still needs to be addressed. Mental health among people living with hiv is more common than in the general population, and especially profound in older people living with hiv. Depression, a decline in cognitive functions and fatigue are some of the effects of poor mental health. These problems can be aggravated by social isolation and a lack of resources to address mental health issues in marginalized groups. For long time survivors loosing friends and partners early in the pandemic could also lead to post traumatic stress.

To keep check on ones mental health is as important as taking care of our physical health. Key to improving ones mental health is social interaction. Interacting with others, being seen and accepted for who you are and a sense of belonging are all important aspects to sustain a healthy mental state.

Sometimes it can be difficult to determine ones own mental health, for people that withdraws into isolation it might be even more difficult to sense when something is off. However, many of us needs alone time to recharge, but prolonged periods and a change in behavior might be indicators that things are not all a ok. Poor mental health can affect personal finances, relationships and the quality of life. Talking to someone and assessing if you need to work with your mental health is often a good starting point. Talk to your doctor or find an hiv organization that can give you support and if needed provide a professional service to assess how you can work with your mental health. Hiv shouldn’t deprive us of a good quality of life and there are ways to improve to not only be ok, but to even thrive and live well with hiv.

 

To be alone in itself is not dangerous. But there are risks for people living with hiv experiencing a higher degree of social isolation that results in a negative impact on mental health. Depending on the severity, social interaction or professional helps in addressing issues and raising quality of life.

An hiv organization can help both with pinpointing the cause of the problems and providing support and tools in living well with hiv. Talking to a peer, someone who feels and have experienced something similar, can help validating your feelings and start the process to improving ones mental health. Depending on where you are located other resources might also be available.

Determining your own mental health state can be difficult. Everyone reacts differently to hiv. Some people adapts to the new normal very fast, others cling to hiv not having an impact at all, only realizing later that it has changed their core. Others experience a drastic decline in overall health and outlook on life. To determine whats really going on, its wise to have someone to talk to, be it a peer or professional, or a combination of both.

Alcohol & drugs

Alcohol and drugs can be related to hiv in many ways. It may have played a part when getting hiv or it might be a tool for coping when living with hiv. In either way, too much of it can have a negative health impact. The abuse of alcohol or drugs is higher among people living with hiv.

Alcohol can cause earlier onset of liver and kidney disease. Illegal or street drugs can be life threatening and cause serious health issues. Relationships and personal finances are also at risk when abusing alcohol and/or drugs. The issues are not unique for people living with hiv, but the severity is. People living with hiv are at an increased risk for more severe health problems caused by alcohol and drugs, leading to commodities and premature death. The risks even extends to smoking, smokers living with hiv are more likely to develop more severe cardiovascular disease, lunginfections and cancers, compared to smokers not living with hiv.

Chemsex (drugs used to enhance sexual pleasure and increase stamina) is a phenomena that has been more common among people living with hiv. Although drugs has been used to increase pleasure for a long time, chemsex poses several health risks, especially for gay men, sex workers and other marginalized groups.

Whatever your relation to alcohol and drugs, assess how it impacts your life. If you need guidance and someone to talk to, contact us.

People living with hiv are at an increased risk of injuries and disease due to alcohol and drugs. Limiting the consumption of alcohol and drugs is therefore recommended. Unfortunately even small amounts, two glass of wine or one beer a day, carries an increased risk of disease and injury. For people living with hiv, its especially important to monitor and care for liver and kidneys, as these organs also function to process the hiv medications.

Hiv medications can enhance or diminish the effect of other drugs. A compilation on drug interactions can be found here:

https://www.hiv-druginteractions.org/checker

In studies, smoking has shown a more negative impact on people living with hiv compared to people not living with hiv. Smoking cessation, in particular for people into their 50´s, is strongly recommended. There are a number of positive health effects quitting smoking, and the outlook and overall helath can be improved greatly.