By Olive Dempsey
It is a great pleasure to be asked to write about some issues H.I.V./ A.I.D.S. Counselling has to address. In my role as counsellor with Dublin A.I.D.S. Alliance I was able to explore together with my clients, their experiences, hopes and expectations, and avoiding where possible my own assumptions, prejudices and beliefs.
I think it is appropriate to share with you some of my history and background with DAA. Being part of the voluntary sector, we attracted a diverse range of individuals from the community to use our services.
I became a volunteer with Dublin A.I.D.S. Alliance in April 1992, having seen their ‘ad’ in a newspaper. After my training with them I chose to work in the area of education and prevention. This being a service offered to schools, colleges, FAS training centres, women’s groups etc, it meant going out and giving talks or workshops, covering some or all of the issues related to H.I.V. and A.I.D.S. My counselling background meant my attention was being drawn to the personal effects in people’s lives because of exposure to H.I.V. and A.I.D.S. I could see that prevention and education were only part of the issue.
As I spent time in Dublin A.I.D.S. Alliance’s building on Parnell Square, I observed people coming in off the street, looking for support, i.e. asking to speak to a counsellor, asking for advice, asking for information, wanting a chat and generally asking for someone to listen to their story. It was obvious, care and support was very much needed and also that something more focused was also required, namely counselling support.
In early 1993 I became involved with DAA’s Care and Support Project. It consisted of a number of services, i.e. Counselling, Holistic Therapies, Creche and Drop-in Centre. Starting off slowly, all of these services became very successful and all were very much responded to. These services were staffed by the appropriately skilled people being either paid staff, FAS workers or volunteers. We introduced a counselling service and my position covered telephone counselling, crisis intervention, one to one counselling, family support and staff support.
The majority of people who called to the centre were in touch with the Eastern Health Board clinics or hospitals, but also wanted or needed and alternative place to come. I perceived this needed to be ‘non-clinical environment’, i.e. no white coats or uniforms, no filling out personal details on forms, no strict appointment schedule, just a safe place to come and talk.
When a person decides to go for counselling it is usually during a time of great personal distress. Maybe an ongoing problem keeps cropping up or maybe an immediate crisis needs urgent attention. The counselling process is an opportunity to provide immediate interventions and involve the client in ongoing medical, social and family support networks.
With H.I.V./A.I.D.S. the common feelings experienced by people are: terror, because they cannot name their fear; fear, because they know something of what they face; and shame, because H.I.V. has so many culturally disapproved of connotations. Those directly infected with or those affected by the virus experience such deep emotions and fears that the person usually presents themselves in utter despair and confusion.
In my experience I found that initially when a person suspects that they might have put themselves at risk, it could take some time before they either:
a) phone a helpline in order to clarity their situation and get information as to how to proceed with getting a H.I.V. test. b) make an appointment to have a test.
There are people who postpone having a test and manage their fears by availing of telephone counselling. This sometimes is enough for some people due to the fact that it is so anonymous. The telephone counselling must though have guidelines so as to prevent a dependency situation developing. I remember one man in particular who had put himself at risk, and 12 months later was still fearful of having a H.I.V. test, so postponing the test time and time again.
Availing of telephone counselling was a great help and support for him in coping at that time. His basic fear was that hearing the news of a ‘positive’ H.I.V. test would mean his life would all fall apart. Regular telephone counselling was his life-line for a time and after two months he stopped calling. From this point of view telephone crisis counselling can be very disheartening for the counsellor. The anonymity works both ways and while the caller can be fairly sure the counsellor will be there when s/he calls, the counsellor is in a limbo place, not knowing what is going on for the caller and unsure about the outcome of this anonymous interaction. When the calls stop, the counsellor must cope with the stress of wondering what has happened.
In a one to one session initially, a person presents their most immediate problem, and depending on how they are emotionally or physically the presenting problems vary. Almost always the most difficult problem is ‘who to tell’. This choice can be made with support, encouragement and also making available an immediate support person. H.I.V. & A.I.D.S. counselling often differs from ‘ordinary’ counselling in that the counsellor will be that support person and will sometimes be asked to do things that would not be part of the counselling relationship in other areas of human concern.
For example; those clients who have partners/wives/husbands also have a difficult task in letting their loved one know. I was asked on one occasion to be with a client who was a father of two, while he told his children he had A.I.D.S. and was medically diagnosed as being in a critical stage of the virus progression. The children reacted differently, his twelve year old daughter cried while his fifteen year old son asked lots of questions.
The counselling relationship can be a little complicated in these situations and it often has to be made clear with the presenting client that other members of the family may want to work through their reactions with the counsellor. This can happen when the counsellor is asked to meet with the family or with individuals within the family. In the example just quoted, the father was living in London and was to return the following week. When he did return the daughter came to see me a number of times to talk about her fears and feelings. Raising awareness of the medical facts about the virus must also be addressed. Sometimes clients are so numbed that there are medical questions yet unanswered. If recently diagnosed, it can be too distressing to inquire from the doctor all the medical facts and details. During the counselling sessions this can surface slowly when the client is ready.
In my experience, clients who have been helped to get in touch with their feelings are better able to cope with all the facts. It is not the role of the counsellor to delve into medical explanations, but information can be passed on factually, pointing out that the counsellor is not a medical person. Encouraging the client to be open with their doctor on their visits and to have all their questions answered and explained, is also encouraged.
A counsellor needs to be conversant with the medical background to the virus because they will be asked, from time to time, by clients to act as support while clients attend Health Board clinics i.e. in order for the counsellor to ask the medical questions on behalf of the client with the client’s consent and later to explain the details in more understandable terms.
Different issues arise while counselling males versus counselling females and must also be considered. I found that the majority of my clients were males, and observing and asking my female clients about their situations regarding personal care and support I discovered a number of similarities. Their main concern was the family, i.e. the children. But for women there were often added strains. For many, caring for the children and the home was their primary responsibility and so time consuming that the women barely had any time for themselves. While both men and women spoke of shame in having to attend a clinic and being identified as H.I.V. positive, women seemed to feel more exposed and vulnerable. Other implications would be ‘the children finding out, and the embarrassment and pain such news would cause them’. Mothers were more aware of the possibility of their mothering role being questioned than men would feel their fathering role scrutinised. Prominent concerns for childless women were the difficulties and problems around conception and pregnancy. Would they ever be able to have a child and what would it be like for them to forego the possibility of becoming a mother?
When the relationship between counsellor and client has reached the ‘comfortable’ and secure stage other relevant issues can be raised. Psycho/emotional problems are the basis for most people to seek counselling, however, when they are associated with H.I.V. they take on an added urgency especially issues within relationships.
From the counsellor’s point of view these problems frequently relate to unpredictability, instability, hopelessness and separateness. Introducing some balance to client’s belief systems is quite useful – exploring the idea that it is possible to live with some measure of uncertainty and unpredictability which is reality for anyone with a life-threatening illness is important. It is helpful to strengthen client’s recognition in their own personal coping mechanisms and to clarify that are their own primary resource to deal with difficulties. They can be responsible for a more conscious awareness of self-care.
It is not possible to think about living with H.I.V. unless we also think about the possibility of death. When the subject is being discussed it is necessary to note that thoughts about death and dying have to be balanced by thoughts about life and living. In this way, the focus can be switched between the two in order to help clients to live more effectively with the virus. With H.I.V. also, there is a tension between feelings of hope and hopelessness. These feelings are directly linked with situations of uncertainty and certainty. The course or outcome of illness can never be accurately predicted but at times relief can be assured of certain symptoms if promptly treated medically and this is very reassuring to the client.
At the end of the day the counsellor’s role has to be delicately managed, always being aware of not to disqualify clients’ negative feelings and insist on feelings being put on the ‘good’ side. The confrontation of problems has also to be tackled when appropriate.
An overall list of all the support systems available must be discussed in order to encourage the client to avail of the range of services currently available where necessary, and for the counsellor also to have that back-up support. It is important for those living with the virus to know that there is a panel of lawyers who have formed together to help with the planning and application of ‘Living Wills’. They also will assist a H.I.V. positive person with certain legal problems, mostly probate. These lawyers have attended information sessions on H.I.V. and A.I.D.S. and are very supportive and helpful. They can be contacted through Community Support Project at Dublin A.I.D.S. Alliance.
Because of the particular stresses and demands on H.I.V. counsellors it is imperative that they ensure adequate time is taken for supervision and personal de-briefing.
From my personal viewpoint I have been amazed at human-beings’ capacity to manage and overcome extreme difficulties and I have felt honoured to have been allowed to walk with my clients for part of their journey through their traumatic experiences in this life. To enable a person to find a positive aspect to their life, even when facing illness and death, can sometimes be a very slow process, but because that possibility is there, it is worth the effort.
Olive Dempsey is a Community Counsellor and is interested in various areas including spiritual healing. She currently works with “The Hands of Light Healing Centre” in Ballsbridge.