How do you deal with being diagnosed with HIV?
An HIV diagnosis can really mess with your head. But first things first: Thanks to modern treatment options, you can live a long and healthy life with HIV. Yet for many people, it's difficult to cope with a positive test result at first. There may also be questions and uncertainties that surface for a while after the diagnosis, which can also take a toll on your mental health and emotional well-being.
The term "mental health" is often used today in connection with psychological well-being. This doesn't just refer to the absence of psychological health conditions, such as depression, burnout and cognitive impairments. It also implies a positive state of psychological well-being. So good "mental health" doesn't just mean "I'm not bad"; it also means "I'm feeling good".
Individual factors, such as satisfaction with one's life or the experience of positive emotions, and social aspects, such as the ability to participate in social activities or pursue a career, serve as indicators of mental health.
Welcoming your feelings and thoughts
So, what does that mean when it comes to coping with your HIV diagnosis? First of all, the ability to cope with an HIV diagnosis varies greatly from person to person. What matters is that you allow yourself to feel your feelings and experience your thoughts – even if it's difficult at times. It's normal for an HIV diagnosis to cause psychological challenges because it's a completely new situation for you. The more you are in touch with your feelings and your current situation, the better you can deal with them.
In the following video, Moritz talks about how he dealt with his diagnosis, and what it's like living with HIV:
Most people find it very helpful to talk to someone about how they feel. If you decide to involve people from your social circle, they might also have questions, for example, what impact HIV will have on your life, or whether there's anything they need to consider when coming in contact with you. It's helpful to be well informed before discussing HIV. This will make it easier for you to deal with any questions that arise during the conversation and to settle any fears that they may have.
If it feels right for you, you can also seek professional support, for example, from an expert who professionally supports people in such situations. Seeking support is not a sign of weakness. It's quite the opposite: it shows that you are committed to yourself and to your mental health. There are numerous professional counselling and self-help services out there, so there is likely to be something suitable for you.
Many people with HIV report that they were or are worried about how those in their social circle (such as friends or family) might react to the news that they are HIV positive. Dealing with your own diagnosis and how much you open up to others about it is, of course, a very personal matter. The counselling and self-help services can also give you guidance on this. What might be even more important for many people is that you have the opportunity to talk to other people who are also HIV positive, some of whom have been living well with HIV for many years.
For more ideas and recommendations on how to incorporate HIV into your personal life, see the section "Support in your area".
Support in coping with an HIV diagnosis
For some people, it's easier to sit alone with their questions and insecurities. But sometimes, our worries can get out of control, which can cause mental issues like depression. This is not meant to scare you, but to encourage you to take care of yourself and to seek support so that you can gradually come to terms with your HIV infection and maintain your mental health.
Of course, the obvious thing to do first is to talk to someone you trust, like a friend. If you don't feel comfortable talking about it with someone close to you at first, that's understandable. In this case, or in addition to talking to people you trust, it may be helpful to seek professional help from counselling services or psychologists who specialize in this area. They work daily with people in your situation, so they understand how you feel and can be sympathetic and non-judgmental. They also have a lot of experience dealing with HIV and know exactly how to best support you.
You should never feel ashamed or see it as a sign of weakness if you decide to seek out professional support to cope with a challenge, such as an HIV diagnosis. It's quite the opposite: it shows that you know how to take care of yourself and when to seek help. This is important because it can also affect your HIV treatment: the more you have come to terms with your diagnosis, the easier it will be for you to see HIV treatment as an integral part of your life from now on and to take your medication consistently.
- If you miss a pill because you were feeling down at the time, it's important to talk to your doctor about it. Together you can have a discussion about how to manage your treatment better.
Today, there is a wide range of counselling and support services available for HIV patients – not only for medical issues, but also for mental health issues, i.e. the psychological and psychosocial impact of an HIV diagnosis. The offer ranges from one-off consultations to long-term psychotherapy support. You can choose what best suits you and your needs. HIV specialists also have a network of psychologists and counselling centres and can give you an individual recommendation.
Professional counselling and self-help services
An important source of advice and self-help for HIV patients is the Deutsche Aidshilfe (German AIDS Foundation), often abbreviated to DAH. They offer a variety of counselling services related to living with HIV – by telephone, online or on site. All offers are free and anonymous.
What's also very helpful is to hear about the experiences of other HIV patients – Keyword: Self-help. In addition to providing traditional counselling by specially trained staff, the German AIDS Foundation and other organisations also offer access to various self-help services, such as local self-help groups. There are discussion groups and open meetings, but also various other activities, such as sports and leisure activities or lectures on medical, psychological and social topics related to living with HIV.
These information services and, above all, discussions with other HIV-positive patients can help you cope better with the possible challenges of living with HIV. Another advantage is that these types of activities allow you to make new friends who are in the same situation as you, or who have already overcome the challenges you are now facing.
The Buddy Project is a special initiative for people who are HIV positive to exchange ideas with other HIV-positive people. Here you have the opportunity to contact a buddy, in other words, a person who is HIV-positive themselves and who can give you advice and support in dealing with the infection based on their own experience.
Whether you use the numerous services offered by the German AIDS Foundation or the local AIDS organisations in your area, and which ones you use, is entirely up to you. Simply choose what suits you best and what you feel most comfortable with. You can find an overview of the counselling and self-help services offered by the German AIDS Foundation and other institutions here:
You can find additional self-help offers in the section “Self-help networks“.
In this video, Agatha describes why, in addition to receiving adequate medical help, psychological support is vitally important for people living with HIV.
Should you confide in friends, acquaintances or family?
Each of us deals with life's challenges differently. Some people like to seek advice and talk to people around them who they trust.
Others prefer to sort things out on their own first. What works best is entirely up to you. There is no right or wrong. The tips and suggestions below can help you to gain personal clarity about whether you want to confide in others about your infection and, if so, who you'd like to confide in.
Being open can take the pressure off
After receiving an HIV diagnosis, many people find it helpful to talk to people close to them. Sometimes, choosing not to talk about your diagnosis and the fears and worries that may accompany it, and instead deciding to deal with everything on your own, can be very stressful. People you trust (like close friends or family) can support you and help you cope with your new reality.
Don't underestimate how good it can feel to have a trusted friend accompany you to a doctor's appointment, or just to have someone to talk to who shows you that they are there for you and will continue to support you. Another advantage of being open about your HIV diagnosis with those close to you is that you do not have to hide things like your medications, the fact that you are taking them or your visits to the doctor.
Being open about your HIV diagnosis in your close social circle can relieve a lot of stress. However, it's a good idea to take some time first to think about who you want to tell about your diagnosis. You should trust these people completely, so that you do not have to worry about them sharing things with others that should remain between you.
The experiences of others may help guide your decision. Having personal discussions with other HIV patients about this can be very helpful.
Unfortunately, the reactions you might get are not always what you hoped for. People may be overwhelmed when they first learn that you are HIV positive. They may react with great concern or even hostility when you open up to them. This is mainly because many people still know too little about HIV. For example, many people don't know about modern HIV treatment and that someone with HIV can now live a long and healthy life. Also, the fact that HIV cannot be transmitted through everyday activities and that successful treatment even prevents transmission during condomless sex ¹ ² is something many people aren't aware of.
Putting people's minds to ease with knowledge
It is therefore a good idea to learn more about HIV and what living with HIV can be like today. That way, you can settle other people’s fears and worries through conversation. Explaining that HIV is now a chronic disease that can be easily treated and that you can lead a normal life will help them to assess your situation correctly.
Understanding what it means to live with HIV today and the medical advances that have been made gives your loved ones the confidence to react normally. Ultimately, here's what's important: it is your choice who you trust and who you don’t, and you should make that choice wisely. It's your decision whether, when and to whom you talk about it.
Are you obligated to share the news?
From a purely legal standpoint, you are under no obligation to tell anyone that you are HIV positive, not employers, not doctors, and not even your sexual partners. In the case of sexual partners, however, the condition is that you work together to prevent any possible transmission of HIV. If you are under the detection limit (undetectable), you can prevent transmission with the treatment as prevention; otherwise, through the use of pre-exposure prophylaxis (PrEP) or condoms.
However, there may be situations in which it makes sense to inform others about your HIV diagnosis. At the very least, so that you don't feel you have to hide it or deceive others.
Discussing your HIV status might be a good idea, especially in the following situations:
Sexual partnerships
It's important to inform sexual partners with whom you had sex after acquiring HIV, but before learning of your diagnosis, because you could have transmitted the virus. If they did in fact acquire the virus but are unaware of their diagnosis, they can unknowingly transmit HIV to others - and so on. Even though this type of conversation might be difficult in some cases, informing your sexual partners and giving them the opportunity to get tested is fair and responsible.
Substance use
If you have shared syringes with others for intravenous substance use, transmission may have occurred. This also means that they could now pass on a possible HIV infection to others. It also makes sense to talk about your HIV diagnosis in these cases.
Medical care
There are many benefits to informing your doctors, such as your general practitioner, that you are HIV positive. This will enable them to correctly classify any co-morbidities or complications that may occur. It may also be important to keep your HIV infection in mind when taking prescription medication for other illnesses, because not all medications are compatible with HIV medications.
Unfortunately, not all healthcare workers are optimally informed about HIV. In particular, many healthcare workers are unaware that the virus cannot be transmitted if the HIV-positive patient is receiving successful treatment1, 2 – that is, if their viral load is under the detection limit (undetectable). It can therefore be helpful to make your doctors and other people involved in your medical care aware of this connection and to inform them if you are below the detection limit due to successful treatment.
If, during a doctor's visit, you have the impression that you are being treated differently or that they would rather not treat you: Your HIV specialist or employees from the HIV counselling centres can give you a list of doctors who you can contact with confidence. For more information about discrimination against people with HIV, consult the section “Combating stigmatisation and discrimination“.
The workplace
In Germany, there is no general obligation to inform employers about an HIV infection. The choice of profession is also not restricted by an HIV infection: For example, HIV patients can also perform physically demanding jobs or choose careers in the healthcare sector, such as medicine or nursing.
In some cases, however, there are certain restrictions on professional activity. Here are a few examples:
- If certain activities can no longer be carried out due to a permanent, severe impairment of the general physical condition as a result of the weakening of the immune system
- If your job requires business trips to countries where HIV-positive people are not allowed to enter
- If you work as a surgeon (some activities can only be carried out if you are under the detection limit)
You can find more detailed information how an HIV diagnosis affects your work here:
You can find out more about employment law issues for people with HIV here:
Being open about your HIV diagnosis can offer many benefits and can relieve some of the mental burden. Nevertheless, very few people in Germany are completely open about their HIV status. The "Positive Perspectives” study3 shows:
The "Positive Perspectives" study also offers many other interesting results on questions that concern HIV-positive people:
What's the best way to share the news?
Of course, it can be difficult at first to tell others that you are HIV positive. However, it is often better not to put off such discussions, but to find the courage as soon as possible after a positive test result and, above all, to tell those who may have unknowingly passed the virus on to you. You can read more about which situations this may concern in the section “HIV transmission”.
You can take more time with other people in your social circle, such as friends and family. This means that there is nothing wrong with waiting until the time is right to have a conversation.
What do you want to say?
If you decide to talk about your diagnosis with people around you, it helps to prepare and think about what you want to say. For example, the conversation will be easier for you and the other person if you don't just tell them that you are HIV positive. It is a good idea to explain to the person that, thanks to modern treatments, it is now possible to live a long and healthy life with HIV. Many people also do not understand which activities may lead to HIV infection at all – and above all, that HIV CANNOT be transmitted through everyday activities. Even the the difference between HIV and AIDS is something that very few understand these days.
It will also help if you are already comfortable talking about your HIV status and therefore feel more secure. This is because, in many cases, you will be much better informed about what it is like to live with HIV nowadays than the person you are talking to. This gives you the opportunity to provide them with support, as well as the necessary knowledge about HIV.
Offering additional information about what modern life with HIV looks like today can take some of the fear out of hearing "I am HIV positive." If you want, you can also have information materials ready to give the other person after your conversation. It is often easier to have something on paper that you can go back to at your leisure after such a conversation. You can find suitable materials for this here:
It is best to choose a quiet moment for a conversation that gives you ample time. This way you can talk calmly about your diagnosis and what it means for the rest of your life. Sometimes it can be good to divide the conversation into two parts: one that should be limited to the essential information, allowing the other person to absorb it, and another one that should revisit the topic and give the other person the opportunity to ask questions once the news has settled in.
- There is no universal pattern for how a conversation like this should go. It depends on many different factors – your own personality, the type of relationship and your trust in your conversation partner, or even the communication culture between you and them. It's important to find a way to speak that you feel comfortable with and that feels right. Your doctor and the counselling centres have a lot of experience with sharing the news of an HIV infection. They can give you valuable tips.
Thanks to modern treatment options, an HIV infection is now easily treatable, so that people with HIV can now live a long and healthy life. According to the Robert Koch Institute (RKI),4 in Germany, HIV treatment is so successful in about 95% of those treated, that HIV is no longer detectable in the blood. HIV-positive patients who have been successfully treated cannot transmit the virus if they have an undetectable viral load, even during condomless sex,1, 2 and in everyday life, HIV transmission is not possible anyway.
However, most people still don't know anything about how HIV is treated, and what it means to live with HIV today. Many people still have outdated images from the 1980s—of people with HIV developing AIDS and failing to get proper treatment. That is why some people still equate an HIV infection with AIDS, and therefore see it as a death sentence, which is no longer the case today. Also, in terms of the transmission pathways, many people simply lack accurate information. As a result, there are still prejudices and fears about HIV-positive people, even if they are totally unfounded.
When HIV-positive people are seen in a negative light and condemned solely because of their diagnosis, it's called stigma. It is therefore a generalised negative assessment. Stigma comes in two different forms: on the one hand, it can come from outside, which means that other people judge you because of your HIV diagnosis even though they don't know you. Or it can come from within... you blame yourself, judge yourself for having HIV and feel ashamed. This is called self-stigmatisation.
A more concrete term is discrimination. This refers to personal discrimination against individuals because of certain characteristics or illnesses, such as an HIV infection. For example, it's discrimination if a dentist refuses to treat you because you're HIV positive, or if an employer does not want to hire you because of it. This disadvantage is often based on stigmatisation. This means we can say that discrimination (a concrete disadvantage) is a consequence of stigmatisation (a general negative assessment). While stigmatisation is an internal attitude or a personal stance, discrimination is understood to be behaviour based on this attitude.
But you can and should fight back against discrimination. Your options for this are described in the section “Report discrimination”.
Unfortunately, even in today's supposedly enlightened society, the stigmatisation of HIV patients is still very widespread, as an international study3 of people living with HIV from 2017 shows:
Stigma by other people
Although very obvious forms of stigma—such as HIV/AIDS jokes—have become rare, there are still many areas in which HIV-positive people are exposed to stigma in public or private spaces. How this looks in certain situations can vary:
Professional life
HIV patients may be denied permission to continue in their jobs by their employers as a result of blanket prejudice after their HIV status has been revealed. This mainly happens in fields like medicine, nursing or childcare. Another case of stigma and discrimination in the professional environment occurs when an employee is denied a promotion within a company because of an HIV diagnosis.
Medical care
Many HIV-positive people report being turned away by doctors or only being given appointments at the end of office hours because the practice supposedly had to be thoroughly disinfected afterwards. Some physiotherapists will only treat HIV patients while wearing rubber gloves. This is also a form of stigma or discriminatory behaviour. Behind such discrimination is often the fear (which is completely unfounded) of acquiring HIV.
Insurance industry
Many HIV-positive people experience social stigma when trying to obtain certain types of insurance. For some types of insurance (such as risk-based life insurance, occupational disability insurance or private health insurance), the applicant is required to undergo a medical examination before the policy is concluded. Many insurance companies do not offer such insurance to HIV-positive people at all or only under very unfavourable conditions - regardless of the fact that people with HIV today have a normal life expectancy and enjoy good health with successful treatment. You can find out more about this in the section “Legal issues and insurance”.
Personal environment
However, stigma and discriminatory behaviour can also show up in social relationships: sometimes friends and acquaintances withdraw after they find out that you are HIV positive. However, the most common form of rejection occurs in sexual relationships or dating. There are still many people who do not want to have sexual contact with an HIV-positive patient for fear of acquiring HIV themselves. There are still deep-seated but unfounded fears here, because with successful HIV treatment and a viral load is under the detection limit there is no risk of transmitting the virus, even during sex without a condom.1, 2
Stigma and discriminatory behaviour can also occur in one’s immediate personal environment. In some cases, HIV-positive people are pressured by their family or partners to conceal their HIV status in order to prevent it from becoming known to the outside world. This is also a form of stigma—albeit a more subtle one—because such behaviour suggests that HIV infection is something that needs to be hidden.
However, there are also positive trends: today, according to a survey,5 29% of people with HIV already say that they are open about their infection with their employers. The majority (74%) of employers responded to the news of HIV-positive employees in a supportive or neutral manner.
Self-stigmatisation
No less stressful than external stigmatisation are the negative thoughts that can take hold in the minds of some people with HIV. Many people perceive their infection as something to feel guilty about, or as some sort of failure. They might tell themselves things like "I failed to protect myself, so it's my fault that I'm in this situation now."
Some people also adopt and internalise negative judgements that may be presented to them from the outside, for example: "I behaved poorly by giving in to my sexual desires without taking adequate precautions, and HIV is the just punishment for my behaviour". This self-condemnation is often accompanied by a strong sense of shame.
Particularly affected by this type of self-stigma are people who do not conform to the historically grown and still widespread cliché of an HIV-positive person (male, gay, promiscuous or addiction to drugs). In heterosexual circles, HIV is still often taboo or dismissed as a purely "gay" problem.
As a result, heterosexual men are often particularly ashamed of their HIV infection because they fear that people will think they're homosexual. Heterosexual women with HIV, on the other hand, often fear that people will think they're promiscuous or sex workers, or even that they have these characteristics, which do not conform to the prevailing model of a 'decent' woman. In both cases, unfortunately, widespread and deeply internalised social patterns still prevail, according to which any sexual behaviour that does not conform to a standard heterosexual norm is to be judged as bad.
- The best remedy against self-stigma is to accept your HIV diagnosis for what it is: something that does not require judgement, moral guilt or social condemnation - but for which there is certainly an effective therapy and good prospects for the future.
If you find that you are having difficulty accepting your HIV diagnosis or feel that it is affecting your self-esteem, then this is a strain on your mental health that you do not have to accept. You can get help to realign your thoughts. For information on where to find support, consult the section "Professional counselling and self-help services".
Breaking down prejudices
What can be done to combat stigma and discrimination of HIV patients? The first priority here is education. Stigma in connection with HIV is mostly based on a lack of knowledge about the routes of infection, about what it means to live with the virus today and, above all, about current therapeutic successes. One consequence of this lack of knowledge is often the fear of acquiring HIV or of suffering other harm as a result of someone else's HIV diagnosis, for example, financial loss for insurance companies or increased organisational effort for employers.
Public education
The most effective way to reduce ignorance and therefore unfounded prejudices and resulting discrimination is to provide effective and sustainable information to the general public about the transmission routes of HIV and about the possibilities offered by modern HIV treatment: Many people do not know in which situations HIV can be transmitted, and especially in which ones it cannot, and that there is no need to be afraid of HIV-positive people or to treat them differently than others.
There has been great progress in HIV education in recent years. Nevertheless, there is still a lot of work to do. This is especially true in the healthcare sector, the area where one would most likely expect people to have in-depth knowledge of HIV. Unfortunately, this is often not the case, as demonstrated by numerous examples of discrimination in healthcare. This is also reflected in the results of a large-scale study3 conducted with HIV-positive people: 48% of respondents from Germany said that better training for doctors would be necessary and helpful to reduce HIV stigma.
Organisations such as the German AIDS Foundation have been working for decades on a wide variety of initiatives and campaigns to put an end to the stigmatisation and discrimination of people with HIV. There are also more and more successes to report. A good example of this is the campaign #wissenverdoppeln (#doubletheknowledge). Its goal is to spread the message among the general public that HIV is not transmissible under successful treatment.1, 2 This knowledge should be passed on to as many people as possible and therefore, in a sense, regularly doubled in society.
Another campaign to reduce prejudice and combat stigma of HIV-positive people is the campaign #HIVersity from ViiV Healthcare. Six people from the community show that they are more than just HIV positive: Each of them is unique and all have diverse and very individual lifestyles. In doing so, they also make it clear that with successful treatment, one can now lead a long and fulfilling life even with HIV.
And finally, in this context, the campaign #positivarbeiten (#positivework) from the German AIDS Foundation. This campaign allows employers looking to promote a natural approach to HIV-positive people in the workplace can sign a statement and take a stand against discrimination of HIV patients.
Educating friends and family
What can YOU personally do? In principle the same as what they're doing in the big initiatives – just on a smaller scale: If you feel ready to be open about your diagnosis, this alone will make a very valuable contribution to raising awareness about HIV and therefore combating stigma and discrimination. Talk to the people you interact with every day – family, friends and acquaintances.
For example, you can talk about what it means to live with HIV today, how good the current treatment options are and how "normal" the future prospects are for people with HIV today. An important and reassuring point in this context could also be the fact that HIV cannot be transmitted during successful HIV treatment.1, 2 For more information and advice on how to talk about HIV with your friends and family, see the section "What's the best way to share the news?".
Unfortunately, such open discussions are not always as successful as one might hope and might not result in a positive reaction. Some people—perhaps even those close to you—might still have prejudices or still be uninterested in the facts about living with HIV today and how it is transmitted. These people might keep their distance despite how open you've been.
In this case, it may help to think of HIV as a kind of test for your friendships, relationships and contacts. Who will really stand by you in this situation? Which friendships are real? A re-orientation offers you the chance to reflect on the people who are truly connected to you. Your new reality can also be an opportunity to expand your circle of acquaintances and friends. In self-help groups, discussion groups, etc. you can find new friends who know your situation well and can empathise with you.
What about self-stigma, the negative thoughts in your own head? Reframing your understanding of your HIV infection can help: it is NOT a personal failure and nothing to be ashamed of. It has happened and cannot be undone. You can accept it for what it is: a chronic illness, but one that will not prevent you from living a healthy, fulfilling and happy life.
- If you find it too difficult to change your mind, accept your situation and make the best of it, make sure to reach out for professional support in the form of psychological counselling or accompanying therapy. This can help you maintain your mental health over the long term.
Report discrimination
If you have been discriminated against in public because of your HIV diagnosis, for example in hospital, when visiting a doctor, at work or at a public authority, some possible scenarios are described in the section “Stigmatisation by other people”, and you do not have to accept it. Such incidents should be addressed and documented. This will help to reduce stigma and discrimination against people living with HIV.
The German AIDS Foundation has set up its own HIV discrimination contact point for this purpose. There you have the opportunity to receive advice by telephone or email. In addition to tips and help with how to formulate a complaint to the institution where you experienced discrimination, there is also the option of reporting incidents of discrimination using a standardised questionnaire and sending it to the HIV discrimination contact point at the German AIDS Foundation. The cases are collected by the AIDS Foundation and used to improve their anti-discrimination work.
References:
- Eisinger RW et al. HIV Viral Load and Transmissibility of HIV Infection: Undetectable Equals Untransmittable. JAMA 2019 Feb 5; 321(5): 451–452.
- Guidelines of the European AIDS Clinical Society (EACS), version 12.0, last updated on October 2023. https://www.eacsociety.org/ guidelines/eacs-guidelines/eacs-guidelines.html.
- Murungi An et al. Experience of Living With HIV: Diagnosis & Disclosure Findings from the Positive Perspectives Study in the Subset of German Patients. Presented at the Congress for Infectious Diseases and Tropical Medicine; 20.– 23.06.2018, Cologne. Poster P-025.
- Epidemiological Bulletin of the Robert Koch Institute No. 28 from 11.07.2024. https://www.rki.de/DE/Content/Infekt/EpidBull/Archiv/2024/Ausgaben/28_24.pdf?__blob=publicationFile
- German AIDS Foundation and Institute for Democracy and Civil Society. Project "Positive Voices 2.0". https://www.aidshilfe.de/sites/default/files/documents/positive_stimmen_ergebnisse_Wolfsburg.pdf
NP-DE-HVU-WCNT-250003 – February 2025
