HOW TO SUPPORT YOUR BODY
The following generally applies: Anything that makes your immune system stronger also supports your treatment and living with HIV. You have a whole range of options to keep yourself fit. These are based primarily on three basic building blocks: sufficient sleep, regular exercise—for example walks or sports—and a balanced, healthy diet.
Movement
Sufficient exercise has been proven to be important for health and general well-being. It doesn't necessarily have to be sweaty training sessions in the gym or traditional team sports. Getting on a walk and some fresh air is also good for your body (and soul). More important than testing your physical limits is regular exercise several times a week – ideally about 150 minutes per week, although this can of course be divided into several smaller sessions.
Strenuous exercise every now and then is a good thing. A good indicator of this, especially during sporting activities, is your own breathing: you may feel yourself breathing a little faster, but you don't need to be completely out of breath. There is also no need to put yourself under pressure: start slowly so you can gradually adjust to your self-imposed exercise goal.
To ensure that it doesn't just remain a good intention, you should choose a sport that you really enjoy. From boxing to Tai Chi, anything is allowed – it just has to suit you. Your fitness level and general physical condition also play an important role in your selection. Your sport can certainly be challenging, but it shouldn't overwhelm you.
If you are unsure whether a particular sport is suitable for you, talk to your HIV specialist about it. They can certainly give you advice on what kind of physical activity you can do to support your health and your immune system. In addition, some counselling centres offer health services, such as sports groups for people with HIV.
- Important to note, because there can always be too much of a good thing: allow yourself sufficient time to rest after training so that your body can recover between exercise sessions. These regeneration phases are also important for your health. As is often the case in life, it's all about finding the right balance.
Nutrition
A healthy diet is actually not as complicated as we often think. It should simply provide your body with enough energy and all the nutrients it needs. Without going into too much detail: there are three "macronutrients" (carbohydrates, fats and proteins) and numerous "micronutrients" (for example, different vitamins and minerals, such as calcium or iron). You should get sufficient amounts of these substances in your diet.
There is no one correct way to achieve this goal – fortunately, because, as we all know, tastes vary greatly when it comes to nutrition. However, there are a few basic things to consider:
- Make sure you give your body high-quality nutrients. For example, it is good to choose whole-grain products more often than bread or pasta made from white flour. In addition to carbohydrates, which provide your body with energy, whole-grain products also contain many important minerals. For example, to ensure you get high-quality proteins, you can eat different legumes (such as lentils, beans or chickpeas). These are much healthier than meat and can be incorporated into very tasty meals.
The nutrition circle from the German Nutrition Society (DGE) gives an example of a balanced diet. It gives an overview of what a healthy and ecologically sustainable diet looks like. It offers a guide with examples for optimal food selection. The size of the food group illustrates its proportion in the diet. The larger a food group is, the more you can eat from it. Eating a varied diet and taking advantage of the variety of foods within the groups is recommended. A healthy and environmentally friendly diet consists of more than ¾ plant-based and just under ¼ animal-based.
Image: The German Nutrition Society's nutrition circle with the seven food groups (DGE-Nutrition Circle®, Copyright: Deutsche Gesellschaft für Ernährung e. V., Bonn, last updated in 2024)
As a general rule, fresh and preferably unprocessed food is always recommended, as ready-made products usually contain many suboptimal ingredients and often a whole range of unnecessary additives, such as preservatives or flavour enhancers, as well as large amounts of fat, salt and sugar. By eating a varied diet with plenty of fresh vegetables, fruit, nuts and seeds, you ensure that your body is adequately supplied with vitamins, minerals and fibre.
Of course, it's great if you like to cook your own meals, because then you know exactly what is in your dishes and whether the ingredients used are high quality. The most important thing is that you feel good about your diet and enjoy eating. Even small “slips”, like snacking now and then, are perfectly acceptable.
With regard to HIV, an anti-inflammatory diet can be particularly beneficial. This is based on the reduction of inflammatory foods, such as refined sugar and high-fat animal products, as well as the conscious inclusion of anti-inflammatory foods in the diet. This form of diet relies primarily on plenty of vegetables, fruit, berries, nuts, herbs and spices. Another good tip is to replace sunflower oil with rapeseed or olive oil.
A healthy diet will strengthen your immune system. This support is especially useful during the cold season.
For specific nutritional plans, such as the paleo diet, vegan diet or sports nutrition with high amounts of proteins and minerals, it is best to speak to a nutritionist. This can help you to most effectively meet your nutritional needs with the diet you choose.
It is also a good idea to keep your HIV specialist informed about your diet, as they are best positioned to assess any potential effects on your HIV treatment: The effectiveness of some HIV medications can be influenced by certain foods or dietary supplements, such as grapefruit juice, St. John's Wort or high doses of minerals, such as iron, calcium and magnesium. Your doctor or pharmacist can tell you whether you need to pay attention to this during your treatment.
- St. John's Wort can often also be found in calming teas that you can buy in the supermarket or pharmacy.
If you have further questions about nutrition, you could also take advantage of individual nutritional advice or take a cooking class. Both are frequently offered by local AIDS foundations.
Sleep
The importance of sleep for physical and mental health is often overlooked. Sleep is essential for life and also plays an important role in cell regeneration – the automatic replacement of old cells with new ones in the body. During sleep, new nerve cells are formed, and the brain is highly active, processing the day's experiences and general mental stress in dreams. Many immune system processes also take place while we sleep. It can be particularly important for people with HIV to get enough sleep, and especially good quality sleep.
The actual amount of sleep needed varies greatly from individual to individual. Some people need nine or ten hours of sleep a day, others need five or six hours – the middle range is seven to eight hours a day. Listen to your body to find out how long you need to sleep at night so that you can start the day feeling fully rested.
Either way, a certain regularity in your sleep rhythm is important. Of course, it's okay if you stay up late sometimes and get less sleep than you actually need. In general, however, it is best to have a set rhythm with a sufficient amount of sleep. The beauty of good sleep hygiene: as well as the longer-term benefits, such as strengthening the immune system and having a positive effect on body weight, there are also immediate effects: greater ability to concentrate, more energy and better mood.
WHAT SHOULD I CONSIDER?
Workplace
For example, if you want to start training in the health sector or are worried about whether you are allowed to take a certain job as an HIV-positive person, you can rest assured: there are no provisions in labour law that prevent people with HIV from accessing certain professions. As a HIV-positive person, you can pursue any activity you want.
Listen to a conversation about the important things people with HIV need to consider in the workplace.
However, the question remains as to whether it might make sense to inform your employer that you are HIV positive in individual cases. For more detailed information, see the section "Are you obligated to share the news?"..
Insurance
Some insurance companies either do not offer certain types of insurance (e.g. risk-based life insurance, occupational disability insurance or private health insurance) to people with HIV or only offer them under disadvantaged conditions. Of course, it is good if you have already taken out this insurance before your HIV diagnosis. If this is not the case, it may be advisable to seek the help of a professional financial advisor.
Many counselling centers can advise on who you can contact in this regard and to what you should consider when taking out insurance. You can find an overview of the different types of insurance and what HIV-positive people should pay particular attention to on this page of the German AIDS Foundation:
If you do not have health insurance or are unsure about your current insurance status in Germany, you can find support from the clearing offices. Visit the German AIDS Foundation website for more on this:
Even today, there is still a stigma around HIV and people with HIV experience discrimination. This contradicts current law, because in Germany the General Equal Treatment Act (often also called the Anti-Discrimination Act) has been in force since 2006, which offers comprehensive protection against discrimination. You can find more information on this on the German AIDS Foundation's website:
The success of modern HIV treatment and the fact that HIV cannot be transmitted during successful treatment1, 2 are unfortunately not yet known in many areas of the healthcare system. As a result, discrimination against HIV-positive people still exists.
There are doctors who do not want to treat people with HIV or only offer them appointments at the end of their consultation hours, out of concern that the next patient could contract HIV if thorough intermediate cleaning was not possible beforehand. This concern is unfounded, because as described in the section "HIV transmission" there is no risk of HIV transmission in everyday situations, such as a visit to the doctor.
For more detailed explanations of what stigma and discrimination are and in which areas they can occur, see the section "Combating stigmatisation and discrimination".
If you are exposed to stigma or experience discriminatory behaviour—for example when visiting a doctor, in hospital, at work or with authorities— you do not have to stay quiet. The section "Breaking down prejudices" provides some ideas on how to counteract discrimination against HIV-positive people. You can also report specific cases of discrimination. More information can be found in the section "Report discrimination".
For more information and to report discrimination, you can contact the German AIDS Foundation, which has set up a special HIV discrimination contact point:
There are other areas in which it may be important for HIV-positive people to be informed about the legal situation. Some examples are:
- Social law
Which of my HIV-related costs will my health insurance cover? What financial security am I entitled to if I lose my job? Am I entitled to a disability card?
- Right of residence
What official permits do I need as an immigrant to be able to stay in Germany?
- Criminal law
Under what conditions can HIV transmission be punishable?
You can get detailed advice on all legal issues related to a HIV infection from HIV counselling centres. You can take a look at the German AIDS Foundation website beforehand to form your own opinion:
THINGS TO CONSIDER WHEN TRAVELLING
Travelling opens our eyes to other countries and cultures and therefore enriches our lives. As a rule, you can travel anywhere even if you are HIV positive. However, there are a few things to bear in mind to ensure that your stay—whether for business or pleasure—goes as you wish.
Travelling to other European countries is usually not problematic. This may be different for long-distance trips. There are countries that refuse entry to HIV-positive people or only allow them to stay for a limited period of time. In addition, in some countries, homosexuality is not socially accepted or homosexual acts are punishable by law. In some countries, there is a general ban on unprotected sex for people with HIV – even if their viral load now lies under the detection limit thanks to successful treatment.
For an overview of the global travel restrictions related to HIV, please visit this website:
The most important regulations for travelling with HIV are summarised in this brochure:
Apart from these potential restrictions, there are a number of medical and organisational issues that need to be considered when planning your trip:
Do you need special vaccinations for your destination?
If the number of your helper cells is low, you may not receive certain vaccines containing weakened viruses (for example, against yellow fever, measles or rubella), known as live vaccines. Talk to your doctor about how you can still get adequate vaccination protection.
Can you easily take your HIV medication with you to your travel destination?
If necessary, ask your doctor for a certificate stating that you need the medication because of a chronic illness. HIV does not need to be mentioned.
Is it best to take out additional international health insurance or travel insurance?
In other European countries, your German health insurance usually covers the costs of treatment in the respective country. You should discuss the situation regarding long-distance travel to non-European countries with your doctor in good time.
Discuss these points with your doctor at the beginning of the planning phase. It is best to bring your vaccination certificate with you.
And when it's time to finally leave? Take some time in the final stages before your departure to check a few important things:
Have you packed enough medication for the entire duration of your trip?
Your medications may not be readily available at your destination and you may have trouble getting supplies there. If in doubt, take a little extra with you; then you’ll have a buffer in case your stay is unexpectedly extended.
When do you need to take your medication during the trip or after arrival?
If there is a time difference with your destination country, depending on how far away your destination is, it can be a bit complicated to determine when you need to take your medication during the trip or after you arrive. It is important to keep in mind that the active substance levels should remain as steady as possible. If you are unsure, ask your doctor to calculate the best time to take the medication.
Have you packed enough medication in your hand luggage?
If your suitcase gets lost during your trip, it is important that your medications are in your hand luggage until your suitcase arrives or you get new medications. To avoid questions and inconvenience, it is also advisable to have a certificate from your doctor confirming that you need the medication carried in your hand luggage due to a chronic illness. HIV does not have to be mentioned explicitly.
Is your travel first aid kit sufficiently stocked?
It's best to ask your doctor or pharmacist which medications you should have with you in addition to your HIV medications.
Is there a medical facility specialising in HIV at your travel destination?
In case any problems related to your HIV treatment arise during your trip, you should know in advance who you can contact. HIV specialists are often well connected internationally, so your doctor may be able to give you valuable advice in this regard.
Being open with your partner
People with HIV deal with their diagnosis differently. Some people find it helpful to talk about it with other people, others prefer to keep it to themselves. However, there is one area where openness and transparency are definitely an advantage: in a romantic relationship. Based on the individual type of relationship, this is one case in which it is useful to discuss how the transmission of HIV and other sexually transmitted diseases can be excluded.
This is especially true if one of you is HIV positive and the other is not. Having open conversations about HIV and other sexually transmitted diseases will help both of you stay healthy and have a better understanding of each other's situations and needs. Another advantage of being open about your HIV diagnosis within a relationship is that your partner can give you the support you need.
If your partner is not HIV positive, a joint discussion with your doctor can help you both learn how to avoid HIV transmission.
One thing is clear: HIV is not transmitted during everyday situations, such as living together or sharing glasses and cutlery. You can read more about this in the section "HIV transmission".
It can also be very reassuring to know: if your HIV treatment helps keep your viral load permanently under the detection limit, you cannot transmit HIV to your partner – even during condomless sex1, 2. This means that consistent and successful HIV treatment is not only good for you, as it maintains your health and a good quality of life in the long term, but also for your partner.
To avoid HIV transmission during sexual intercourse, you basically have three options:
During sex, a condom or a femidom (the "female condom") must be used consistently and correctly. If you have no experience with using condoms/femidoms, ask your doctor or staff at the counselling centres to explain how to use condoms/femidoms correctly to provide safe protection against HIV transmission.
You can access Treatment Prevention (in short: TP). This means that your partner is effectively protected simply by you receiving long-term, successful treatment for your HIV . This is because if you take your HIV medication regularly, it is possible to decrease the viral load, i.e. the number of viruses in your blood, to such an extent that it is below the detection limit. If you are "below the detection limit" or undetectable, you cannot transmit HIV to your partner - even during sex without a condom.1, 2
By using pre-exposure prophylaxis or PrEP for short. In such cases, the HIV-negative partner protects themselves by taking a preventative medication. In certain cases, the costs for PrEP in Germany are reimbursed by health insurance companies. If your viral load does not lie below the detection limit, but you see the use of PrEP as a useful addition to the use of condoms and/or femidoms – especially since only these can protect against other sexually transmitted diseases.
- Please note: the likelihood of HIV transmission can be influenced by other factors, such as concomitant infections (e.g. syphilis) or open wounds in the genital area. How high the risk will be in the individual case should be clarified by talking to your doctor.
For more details on how to prevent HIV transmission, see the section "Preventive measures".
Talking about it whilst dating
You see: the fact that you live with HIV does not mean that you can no longer enjoy your sexuality or that you have to be afraid of passing the virus on to other people. There are many simple ways to avoid this. It helps to be open with your sexual partners.
If you find it difficult to talk about your HIV infection or are unsure how to start such a conversation: we have put together some suggestions for you in the section "What's the best way to share the news?" to help you with this.
However, we would like to emphasise one thing at this point: just as being open about your HIV diagnosis is a very individual matter, so are the reactions of the people you tell about it. Some will react more openly, with empathy and support, while others may be more withdrawn or not want to talk about it. There are no guarantees about how the person will react to the news that you are HIV positive.
This also applies to the particularly challenging situation of confronting people with their own HIV diagnosis: dating and finding a new partner. Many people now use dating apps and online dating sites for this purpose. This raises the question: should I disclose my HIV status when making initial contact, or is it better to wait a while? There is no general answer to this, as both have advantages and disadvantages:
- if you mention that you are HIV positive right at the beginning of a chat or even in your profile, you may save yourself disappointment later because you will never have a deeper conversation with people who generally do not want to have an HIV-positive partner.
- If you disclose your HIV status a little later, you will reach more people, because in addition to those who are already open to the topic of HIV, you will also have people who may not yet have a clear opinion on the topic, for example, because they have not yet heard much about the routes of infection and the current options for treatment for HIV.
How you decide ultimately depends on your personal attitude and obviously on what kind of relationship you are looking for: Should it be something permanent or more of a fling?
It's hard to predict how potential partners will react to the news. It is important that you do not limit yourself too much in your own expectations. You should be prepared for negative reactions if you openly share that you are HIV positive when dating. No one likes being rejected. But it's easier to accept if you have prepared for the possibility in advance and if this situation does not arise at a time when you have already developed deeper feelings.
If someone breaks off contact after you reveal your HIV status, even though you had the feeling that things were going well before, try not to question it any further. If you wish, you can of course offer to explain to your counterpart in more detail what living with HIV actually means today, and how successful treatment and reduction of the viral load to below the detection limit means that the virus can no longer be passed on to others.1, 2 If they don't respond to this, further discussions are usually pointless. That being the case, the right person is surely waiting for you somewhere else!
Finding the right contraceptive method
If you are HIV positive, and if you are on successful HIV treatment, you can conceive and give birth to healthy children. Nothing stands in the way of you starting your own family. However, if you do not want to do this or are not ready to do so, here is what you need to consider about your HIV infection and contraception.
First of all: if you and your partner use condoms or femidoms during sex as a preventive measure, you are obviously also well protected against an unwanted pregnancy.
However, current HIV treatment makes it possible to reduce the viral load to such an extent that HIV-positive people can have sex without a condom or female condom without passing HIV on to their partner. This also raises the question of contraception:
If you are an HIV-positive man* who has sex with women, the same applies to you as to an HIV-negative man: the options for actively participating in preventing pregnancy include the use of condoms and the surgical cutting of the sperm ducts (sterilisation). Your partner has a wider choice of different (hormonal and non-hormonal) contraceptive methods and is not restricted in this by your HIV infection - this means that she can use all forms of contraception intended for women.
If you are an HIV-positive woman* and want to avoid pregnancy, then the situation is somewhat different. Among the hormonal contraceptives (the pill, hormone implant, three-month injection, hormonal coil), there are some preparations that are less compatible with HIV medications. This can lead to either HIV treatment no longer being effective or a lack of reliable protection against unwanted pregnancy.
It is therefore recommended that you also talk openly with your gynaecologist about your HIV status when choosing a contraceptive method so that you can decide together which hormonal or non-hormonal contraceptive method is safe and suitable for you. It is also important to talk to your HIV specialist openly about the topic, because they can then check whether there are any possible interactions between the contraceptive method and your HIV treatment that could influence its effectiveness.
However, maybe at some point, the time will come when contraception is no longer desired – i.e. you or your partner would like to have a baby. You can find more detailed information about what an HIV infection means if you want to have children or for pregnancy, birth and breastfeeding in the section “Pregnancy“.
Substance use during HIV treatment
Current treatment for HIV gives you the opportunity to live your life the way you want and to enjoy your personal lifestyle regardless of your HIV status. For you, this may also include the occasional or regular use of narcotic substances or other stimulants, such as alcohol. These are metabolised in the liver just like the HIV medications. A healthy liver is essential, so nothing more than moderate alcohol consumption is recommended. If you want to know whether and what effect alcohol has on your HIV medication, just ask your doctor.
Some of the recreational drugs (for example amphetamines, liquid ecstasy, mephedrone, cocaine, ketamine, GHB, cannabis, to name a few common ones) can have an impact on your HIV treatment. Here you should be vigilant and take care not to jeopardise your treatment success.
These substances are chemicals just like HIV medications, and under certain conditions they are not compatible with each other. A mixture of recreational drugs and HIV medications may cause unwanted psychological or physical reactions.
In particular, HIV medications and certain HIV treatment combinations that contain a proteasome inhibitor or a booster, such as ritonavir or cobicistat, block important enzymes in the liver used to breakdown other substances. This means that substances consumed in parallel are not broken down normally. Their concentration in the blood increases and increased effects, such as confusion, anxiety, anger or hallucinations can occur.
Image: Schematic representation of the influence of HIV treatment on the degradation of simultaneously consumed substances in the liver
At the same time, the substances consumed may also affect the active substancelevel of HIV medications – that is, the amount of active substances in the blood. If they lower the active substance levels, this can result in HIV treatment no longer being effective and HIV being able to multiply rapidly again. If they increase the level of the active substance, unwanted side effects of the HIV medications can occur.
Under the influence of substances, such as recreational drugs, a loss of sense of time may occur and there is a risk that you might forget to take HIV medication. An irregular intake of HIV medications can affect their long-term efficacy.
Another point that should not be neglected: the use of substances, such as the recreational drugs mentioned above, can impair the ability to make rational decisions. This may put you or others at risk for HIV or other sexually transmitted diseases. It is therefore in your own best interest, and that of those with whom you interact, to use such substances responsibly and in a controlled manner.
- It is important to communicate openly and honestly with your doctor about which substances you take occasionally or regularly. Only then can they assess possible interactions with your HIV medicines, give you the right information and work with you to find the treatment that best suits you and your life, so that both worlds can be reconciled.
You don't have to be embarrassed to bring up the topic of substance use. Your HIV specialist has most likely already treated people with HIV before you who had questions in this regard. You can also talk to your doctor about such personal topics without worrying, because they are bound by medical confidentiality. Therefore, they are usually well informed about what interactions can occur here. Just like you, they want to find the right treatment for you and your current needs and to do that they need all the relevant information.
Some local AIDS foundations offer special advice on the safer use of substances, as well as programmes to support substance users. You can also learn more online:
You can find out more about the interactions between substances and HIV medications here:
Find more information about recreational drugs here:
If you would like to know more about the use of drugs in general, including the safer use of hard drugs, such as heroin:
Smoking as a risk factor
Smoking is unhealthy - of course we all know that by now. However, for people with HIV, smoking represents a particular risk factor. A Danish study4 from 2014 study showed that HIV-positive smokers (only people who had received treatment for their HIV were examined) have almost twice the risk of mortality compared to HIV-positive people who do not smoke. Of the deaths due to non-AIDS-related cancers, more than a third were due to lung cancer. All people with HIV who died of lung cancer were smokers.
The risk of other types of cancer, as well as cardiovascular and liver diseases, also increases significantly if you smoke as an HIV-positive person. The study showed that smoking statistically shortens the life expectancy of an average 35-year-old HIV-positive smoker by eight years. The study authors conclude that HIV-positive smokers lose more years of life due to cigarette consumption than due to the HIV infection itself.
However, there is also some very good news on this: the study also showed that HIV-positive people who quit smoking do not have a higher risk of mortality than those who have never smoked in their lives. This should be a good reason for you to consider quitting smoking, thus reducing the negative effects of smoking on your health. You can help to protect your health in this way.
There is no doubt that this is not always so easy. Especially if you have been smoking for many years. So let us help you with this. Your doctor or the staff at the counselling centres can give you good tips on how to stop smoking for the benefit of your health.
Here are some general recommendations for quitting smoking:
Set a clear date as your goal for quitting
This will motivate you more than a vague "someday" goal.
Think about the situations in which your desire for a cigarette is particularly strong.
Then you can avoid these situations or look for alternatives to cigarettes.
Eat healthily and exercise.
This will help you avoid weight gain when you stop smoking.
Educate yourself about the negative consequences of smoking and the benefits of quitting.
This increases your motivation when you know exactly why it is good for you not to smoke.
Also inform yourself about the side effects of quitting smoking.
It is good to know in advance that headaches, irritability, anxiety and mood swings can occur because of nicotine withdrawal. However, this too shall pass!
Test nicotine replacement products
Nicotine-containing products, such as chewing gum, skin patches, nasal sprays or lozenges can help you with nicotine withdrawal.
Use local support services or self-help groups
Special smoking cessation programmes or talking to other people who are trying to quit smoking can be a valuable help to you.
Positive ageing
Fortunately, thanks to the success of modern HIV treatment, people with HIV now live just as long as people without HIV. This is particularly evident in the fact that in Germany almost half of the people with HIV are now over 50 years old. This means that many HIV-positive people face the same issues and circumstances as any other ageing person.
In our society, with its emphasis on youth in many areas, getting older is often seen as an inevitable evil. This is unjust, because older age has advantages that should not be underestimated, such as more life experience, serenity and inner peace. Fortunately, the general perception is changing, so that the experience and skills of older people are increasingly valued.
Nevertheless, people with HIV often face special challenges as they grow older. If they have not been able to build a supportive social environment throughout their lives, they may live alone or suffer from loneliness and isolation in old age.
In addition, HIV infection is a chronic disease that can be managed effectively thanks to modern treatments, but for which there is currently no definitive cure. This means, on the one hand, that people with HIV have to take medication for life, which, like all other medications, may cause adverse effects and can place additional strain on the body in the long term.
On the other hand, HIV itself triggers chronic inflammation in the body through the increased activity of the immune system, which can be reduced with modern treatment for HIV, but can never be completely eliminated. Inflammation is nothing more than the body's own reaction against a "foreign" stimulus, such as HIV. Since HIV never completely disappears even with HIV treatment, the body is constantly dealing with this foreign stimulus, and this can weaken it in the long term and contribute to the development of other diseases.
The result is that people with HIV are more likely to have additional health challenges as they age, such as comorbidities, than people without HIV. These additional health problems can in turn also have psychosocial effects; in the worst case, they can lead to occupational disability, isolation or psychological stress.
It is not uncommon for HIV-positive people who experience health problems in old age to wonder whether these can be attributed to the effects of ageing, whether HIV may play a role or whether the problems are even undesirable effects of the HIV medication. It is a good idea to talk openly with your healthcare professional to find out whether HIV or your current treatment is playing a role in your health problems. Even in old age, you do not have to simply accept undesirable effects and a reduction in your quality of life. You can work with your doctor to find a solution that will help you maintain a high long-term quality of life.
As I said, these effects CAN come with getting older – but they don't have to. And that's the crux of the matter, because there are a number of things you can do to prevent it from happening:
Take your HIV medication consistently and regularly, as this is the only way to keep your immune system strong and well equipped to withstand the demands of ageing. After many years of taking your therapy, you may feel tired of taking it or worried about its long-term effects. In this case, you should speak openly to your doctor and under no circumstances stop the therapy on your own.
Keep going to your appointments for check-ups and preventive examinations. This way, your doctor can detect possible health changes early and take appropriate countermeasures in good time.
Prioritise a healthy lifestyle with regular exercise, sufficient sleep and good nutrition. This is an important part of keeping your immune system working well as you get older.
Social contact is particularly important for growing old in good mental health. Build a stable social network that will support you even in old age. Friends are the best remedy against loneliness; they offer you support and give you joy in life.
If you would also like to have HIV-positive friends, then take a look at the various discussion groups of the HIV counselling centres or the self-help offers for people with HIV. Chances are good that you will find someone there who is on your wavelength.
The initiative offers a range of important ideas on the topic of ageing with HIV #positiveageing. This is a project in which HIV-positive people comment in a video on topics, such as age-related illnesses, health-conscious lifestyles, the need for care and discrimination in the healthcare system. As an HIV-positive patient, dealing with these issues at a young age can help you to face ageing calmly and maintain your quality of life even in old age.
The project also includes an interactive learning platform on the topic of HIV in old age, which was specially designed for nursing staff involved in outpatient and inpatient geriatric care. As the number of people living with HIV seeking care increases, so does the need to train healthcare staff. The aim of the project is to create understanding and, above all, to impart knowledge in order to prevent discrimination.
Taking care of your health through prevention
Modern HIV treatment has not only improved the quality of life and general health of people living with HIV: it has resulted in a significantly longer life expectancy. Today, people with HIV can, in principle, live as long as people who do not have HIV.
This obviously means that HIV-positive people are increasingly confronted with the usual discomforts and limitations of ageing. With a healthy lifestyle and an HIV treatment that exposes the body to as few long-term side effects as possible, these can in many cases be avoided or the likelihood of their occurrence greatly reduced.
However, it is important to have regular medical check-ups to detect any changes in your health at an early stage so that you can take appropriate action. This is even more true for HIV-positive people, as the chronic inflammation in the body caused by HIV increases the risk of cardiovascular diseases and certain types of cancer, for example.
For people with HIV, the following check-ups and preventive examinations are specifically recommended:
- Check your eye pressure once a year with your ophthalmologist from the age of 40
- Annual check-up with a gynaecologist for HIV-positive women
- Regular cancer screenings with an HIV specialist and/or for HIV-positive men with an urologist
- Annual examination for sexually transmitted diseases (e.g. hepatitis, syphilis, gonorrhoea, chlamydia) by an HIV specialist or, for HIV-positive women, by a gynaecologist
- In case of skin changes, check-ups with a dermatologist
- Annual check of the risk of cardiovascular disease by your general practitioner or HIV specialist – for men aged 40 and over, for women aged 50 and over
- In case of risk factors (e.g. vitamin D deficiency, taking cortisone), regular examination of bone density by your general practitioner
- Annual check-up with the dentist
It is best to talk to your doctor about which check-ups and preventive examinations make sense for you.
In addition, you will also find detailed information on preventive and check-up examinations for HIV in this online brochure from the German AIDS Foundation:
However, there are also a few things you can do yourself to keep your body and mind fit for a long time: healthy diet, sufficient exercise, maintaining a normal weight, smoke-free life, consuming alcohol only in moderation – to name just the most important points. Anyone who takes a closer look at this and follows the basics of a healthy lifestyle can avoid many chronic diseases, especially cardiovascular and metabolic diseases. For more detailed information on maintaining a healthy lifestyle with HIV, see the sections "Sports and Nutrition" and "Stimulants and substance use".
Also consider nursing care
Thanks to modern treatment options, people with HIV can now reach a ripe old age. This positive development means that HIV-positive people, like people without HIV, are increasingly likely to reach an age or health status where they are unable to care for themselves, or where they are dependent on the support of others.
To be well prepared for this situation, you should think about how you want to live in old age. Today, in addition to the classic retirement or nursing home, other forms of housing and care are increasingly available, such as assisted living or shared flats for seniors. It is a good idea to think about which of the available forms of housing will suit you best in old age, even at a stage in your life when these things may still seem a long way off.
- Take a look at facilities that might be suitable for you in good time. This will give you an idea of the facilities, the care provided and the day-to-day running of the home, because a personal impression often says more than a website or information leaflet. Arrange a visit so that the staff can show you everything at your leisure.
As a person with HIV, you should pay special attention to certain aspects when selecting a future care and support facility. Do you feel that there is a tolerant, appreciative climate here? Or do you sense reservations towards people with HIV or towards homosexual or queer lifestyles?
If you are open about your HIV diagnosis, it would be helpful to specifically ask your interviewer during the visit how well the nursing staff is informed about HIV. The best way to do this is to ask specific questions, such as how important a discrimination-free environment is to the facility and what it is doing to ensure that staff are well informed about HIV. If responses to this question indicate an inappropriate fear of HIV or suggest that nursing staff are unaware that HIV cannot be transmitted in everyday situations, this suggests that general knowledge of HIV in this facility is not good.
It is very important that the people who will care for you in the event that you need care later know a lot about HIV. Among other things, this is because they will be the ones who provide you with your medication. You may need to take other medications for other health conditions in addition to your HIV medication, and it is important to consider exactly which medications can be combined well with each other and which cannot – Keyword interactions. To ensure adequate medical care, it is essential that the nursing staff is able to keep an eye on your overall health situation.
- If you have found a facility that you like and that you could imagine living in one day, do not hesitate to put yourself on a waiting list. There is a high demand for many retirement and nursing homes or alternative forms of housing for older people and/or people in need of care. By making a reservation in good time, you can ensure that you get a place in the facility of your choice later and do not have to switch to an alternative that may not suit you as well.
However, you may also be in a situation where relatives—be it your partner or someone in your family—will help you if you ever need it. Even then, it is best to clear this up as early as possible. For example, there are a number of important things to consider when it comes to care at home, from deciding on a level of care to any necessary home adaptations, hiring an outpatient care service and applying for care allowance - to name just the most important points.
The questions that need to be answered in relation to your own age and possible need for care can sometimes be quite complicated and are certainly not the things that people like to think about most. But that shouldn't stop you from thinking about them, otherwise you run the risk of not being able to live the life you want later on.
And: you are not alone with these questions. At the HIV counselling centres you will find competent employees who can advise you and refer you to the right places for specific questions.
References:
- Eisinger RW et al. HIV Viral Load and Transmissibility of HIV Infection: Undetectable Equals Untransmittable. JAMA 2019 Feb 5; 321(5): 451–452.
- Leitlinien der European AIDS Clinical Society (EACS), Version 12.0, last updated October 2023. https://www.eacsociety.org/guidelines/eacs-guidelines/eacs-guidelines.html.
- Positive Perspectives Survey. 2017 Data on File
- Helleberg M et al. Smoking and life expectancy among HIV-infected individuals on antiretroviral therapy in Europe and North America: the ART Cohort Collaboration. AIDS 28 (online edition). DOI: 10.1097/QAD.0000000000000540 (2014).
NP-DE-HVU-WCNT-250003 – February 2025
