Living with HIV

Discovering having HIV can trigger a wide range of feelings. After the diagnosis, many people feel afraid, worried about the impact on their health, guilty, embarrassed, angry, sad or anxious about what others may think. It is important to remember that it is normal to have feelings that may seem inappropriate. Recognising one’s own feelings is the first step to dealing with them.

In the majority of cases, patients’ feelings change over time after they are given the diagnosis. In general, people progressively come to accept that they have HIV, although certain aspects related to the disease continue to cause them anxiety or discomfort. There are many things that can help to obtain emotional and psychological well-being. For example, many people find talking about their feelings with their family or friends is a great comfort.

If, even so, negative thoughts persist and are an emotional burden, professional support or support associations for people with HIV can be very helpful. These associations organise meetings between people in the same situation so that they can share experiences and concerns and feel more supported. Some of these therapies take place in the hospitals themselves, which makes it much more convenient.

Sexuality forms part of our well-being. Many people often feel differently about themselves when they discover they have HIV. The experience can be so traumatic that it causes them to abandon their sexual activity, at least temporarily, and it affects other aspects of their lives.

Being diagnosed with HIV does not contraindicate having a baby. The increase in life expectancy obtained through the use of antiretroviral therapies has also been accompanied by a change in the life desires of HIV patients. There are increasingly more women with HIV and more serodiscordant couples (a couple were one person has HIV and the other does not) who consider reproduction as a genuine option. Until recently, serodiscordant couples wishing to have a baby opted for assisted reproduction techniques, particularly methods involving sperm washing, to prevent HIV transmission from the male to the female and to the future baby, or less effective techniques such as self-insemination in the case of couples where it is the woman who has HIV.

People living with HIV can continue to work, have sex, take part in sports, travel, go out with friends and even have children, if that is what they wish.

After diagnosis, it is normal that some people develop negative thoughts and feelings, and that they may feel unable to control certain situations they experience. These can impact on the perception of one’s own general happiness and well-being.

Several people with HIV find comfort by introducing lifestyle changes after the diagnosis. This also helps them to notice an improvement in their health and quality of life.It is not about changing life radically, but rather about introducing small changes, such as a healthier diet or taking part in regular exercise. If there is the wish to cut down on smoking, or give up completely, but do not feel capable, the patient’s healthcare team can give them advice and tell them where to find resources which can help.

To find balance in the new stage of life, it may be useful to modify habits or include new ones. It is a process in which doubts may appear but keeping in mind that the team is there to help and to trustingly listen patients’ concerns.

It is important to remember that people with HIV have the same rights as any other citizens. However, the tremendous scientific advances have not been accompanied by similar developments in terms of standardisation of the disease. This is due to the stigma which is still associated with the disease.

Even though there have recently been some encouraging changes in how society perceives people with HIV, the data available in Spain indicate that many discriminatory practices may well persist in several areas of daily life. This should not make patients feel bad about themselves. Nor should it make them avoid situations or constantly worry about the possibility of being discriminated against. On the contrary, knowing this can help to become aware of the fact that, like all other citizens, patients have rights that are protected by the judicial system through the application of different laws. Familiarity with rights and acquiring certain skills can help to deal with any stigma or discriminatory situations.

HIV patient support associations can inform about rights and help acquire or develop these skills.

In the healthcare sector, there is the right to receive information about treatment process and state of health. In accordance with the principle of patient autonomy, there is the right to receive prior instruction before giving informed consent for any diagnostic or therapeutic procedure that a patient will undergo. Similarly, the right to participate in decision-making along with the doctor is recognised.

It is important to know that the information about one’s own health is confidential. Only patients and the healthcare team caring for them are allowed to access your personal data. There is also the right to access the medical history or request written information about the healthcare process and the state of health.

If there is the belief that a patient has been discriminated against in the hospital or in any other healthcare centre because of HIV, then there are different options available: complain to the patient services department at the hospital, inform the patient ombudsman in the autonomous community or take legal action. It is important to remember that nobody should be discriminated against because of their ethnic origin, gender, sexual orientation, disability or any other personal or social circumstance.