from Leadership Medica n. 7/2001
The complexity of seropositive people’s needs has brought about the necessity of developing new care strategies to deal with the many problems concerning psychological suffering, which often involve the patient’s affective context. Psychological co-morbidity in HIV patients takes on particular significance since it has a considerable bearing on the clinical evolution of the condition, on the therapeutic compliance and on the adhesion to appropriate prophylactic measures, as well as on the ability to embark on, and maintain, functional affective and sexual relations.
Since there is a constant increase in the number of cases of heterosexual HIV infection, the probability that such couples (in which one or both partners are seropositive) may require psychological assistance is also increasing. In dealing with seropositive couples, psychologists are required to face issues including difficulties relating to making plans for the future, fear of transmission and lack of spontaneity in sexual intercourse, decisions relating to pregnancy; ideas of abandonment and loss; problems relating to care; feelings of lack of confidence, sadness, guilt and anger. If on the other hand the person does not have a partner, he or she may encounter significant difficulties and even abandon the idea of entering an affective relationship, owing to embarrassment, shame, fear of infecting the other person or fear of rejection.
From a healthcare point of view, in order to aid a more effective approach to HIV infection problems, an essential requirement appears to be the planning and availability of “friendly” and open-door couple counselling services, aimed at granting psychological support and information to seropositive people and to their partners, helping couples to preserve their planning perspective, to make decisions regarding their desire for parenthood, to build and improve their affective relationship and their quality of life, and to increase their self confidence.
The psychological co-morbidity in HIV patients takes on particular significance since it has a considerable bearing on the clinical evolution of the condition, on the therapeutic compliance and on the adhesion to appropriate prophylactic measures, as well as on the ability to embark on, and maintain, functional affective and sexual relations.
The latest epidemiological data confirms the rise in the number of couples having a discordant serological status. However, whereas on the one hand HIV positivity in one of the two partners does not constitute an element able to impede the establishing of lasting relationships - which is (evidently) a consequence of both the general public’s changed perception of HIV infection and the progress made in anti-retroviral therapy - on the other hand such an event alters all the equilibria that the couple may have built up over time, forcing it to make profound structural and relational rearrangements. This represents a so-called “paranormative” event, i.e. an unpredictable, accidental event, in the face of which the couple’s habitual ways of functioning turn out to be inadequate. This event requires new problem-solving accommodations in order to be dealt with and overcome.
What one increasingly comes across is the presence of difficulties, crises and internal tensions that are often dodged through the extolling of the problems connected with the seropositivity and the discordant serological status, which are viewed as responsible for the couple’s unhappiness. This pressure cannot but interfere with the life led by the seropositive person who will feel ever more guilty, wrong and selfish for having bound to himself/herself the life of a seronegative person. In such situations it is not unlikely for one partner or both to resort to dysfunctional behaviours aimed at demonstrating that they can no longer stay together and giving rise with such acts to increasingly deeper wounds in the relationship to the point of interrupting its continuance. In other cases, it has been observed that the couple carefully avoids the subject, due to the strong emotions that this disorder entails. It is fairly reasonable to suppose that every individual aware of his/her seropositivity, and every individual who has a seropositive partner, would intimately tend to dwell on feelings, fears and fantasies concerning transmission of the virus, disease progression, physical and cognitive decline and premature death.
Sometimes it can be really difficult for the partners to talk openly and confront these fears. Yet the lack of communication and the absence of reciprocal trust will continue to interfere with the couple’s intimacy and growth. The breaking up of discordant serological status couples and the formation of others having the same serological status is, unfortunately, a current trend.
The need to overcome one’s difficulties in an uneven situation, to feel more at ease with someone who shares the same problems and prospects, appears reassuring and guilt-attenuating, and (paradoxically) introduces elements of normality within the couple. HIV brings to the forefront of a relationship a range of problems connected with sexuality and the couple finds itself with a need to find a new set-up also (and especially) at this level. Sexual activity should be planned according to precise prophylactic rules, but these may be disregarded through behaviours aimed at denying anxiety about death or at re-establishing the couple’s lost equilibrium. Denial is often the only practical means of defending oneself from anxiety and fear about the disease and, when this approach is in line with reality, it is a useful attempt to gain time and adapt to the event. If instead it is too intensely structured and used to ignore an extremely unpleasant situation (forgetting the possibility of one’s exposure to infection, and living as if the HIV problem did not exist), it can lead to inadequate attention to the requirement of appropriate prophylactic measures.
Unfortunately the passage from discordance to concordance, as regards the serological status, is frequent. Currently available estimations indicate that the chances of male -> female transmission during non-protected sexual relations is around 0.03-0.9%. The sexual contagion risk to which the seronegative male is exposed, in couples where the female partner is the carrier of the HIV virus, is instead reckoned to be around 0.05-0.15%. However, it is clear that the couple considerably underestimates such a risk. Constant observation of the prophylactic measures is difficult to obtain. Condoms might be felt to be a barrier to intimacy or a constant reminder of the infection and, therefore, can interfere with the spontaneity and pleasure of sexual expression.
Many couples say that using condoms is like “bringing death into the bedroom”, because of all the rational and emotional associations connected with the need for their use. On the other hand not using condoms or engaging in risky sexual relations can be felt as exciting and passionate, a true expression of love and commitment. It has been found that for many seronegative partners, exposure to the risk of infection through the absence of precautions is also a sacrificial act, understood - or perhaps misunderstood - as an “extreme gesture of love”. In such situations what prevails is the seronegative partner’s desire or duty to demonstrate to the other his/her unconditional acceptance and total devotion through sharing the same fate. At the other end of the scale, we have behaviours aimed at completely cancelling out the sexual relation side within the couple. Sometimes, in fact, in sero-discordant couples there is a total removal of the sexual stimulus, as it is a source of anxieties and worry and, at the same time, a collusion or tacit agreement on the choice of privileging the affective relationship.
Sexuality strongly reintroduces the reality of AIDS in the relationship and so for the partners the surest way to avoid the “seropositivity” danger (that could jeopardize the relationship) is to renounce the sexual side. In other cases the sexual infection risk may also be brought about in couples that habitually use condoms but deliberately abandon them whenever the desire for procreation arrives. In these discordant HIV couples, the wish for a child can be so strong as to prevail over the fear of infecting the partner and transmitting the infection to the unborn baby. According to the latest studies, when it is the mother who is seropositive the chances that the baby will be infected is about 5.8%.
When it is the father carrying the virus the vertical transmission possibility is subordinate to the odds of infecting the woman. In order to lower this risk, it has recently been suggested to use some techniques, such as “sperm purification” - practiced experimentally but with some success in Italy.
However, the risk that the couple assumes toward the baby is not just limited to vertical transmission: it also extends to the relational side, i.e. the possibility that the sick parent may not be able to contribute to the child’s upbringing. Very often the desire to have a child reflects the need to re-introduce elements of normality into the couple’s relationship. A child contrasts the feelings of failure, insecurity and loss experienced by the couple and undoubtedly offers a future perspective to the relationship. Planning for the future is an activity that is generally shared by two people in an intimate relationship, particularly when relations grow and consolidate over time.
So, for many discordant HIV couples, the idea of not being able to engage in a future project (in particular having and bringing up children) can be felt as an unacceptable loss. It is understandable, then, how the probability that such couples (in which one or both are seropositive) might require psychological help is increasing. In the presence of seropositivity in the couple, the possibility of understanding the inner logic leading to decision-making seems fundamental, assessing the prevailing factors and opening up the confrontation with the specific difficulties underlying the couple’s relationship.
- acceptance to live with the virus;
- knowing how to recognize one’s desires and adjusting them to the partner’s fears or hyper-protective attitudes;
- being equipped to avoid contagion without renouncing sex;
- and not giving up one’s willingness to make plans, which allows one to experience with the partner even a short/medium-term perspective of the future.
Psicologa - "D.Cotugno" - Napoli