Here for You

Emotional Dimension

from: coping with HIV-AIDS, The path for Aboriginals living with HIV/AIDS

The emotional dimension of life is linked to the heart, feelings and emotions, which have an impact on a person’s health, body and soul. The body and soul can also cause us to experience different emotions. People living with HIV/AIDS go through several emotions which can greatly affect their well-being. Understanding the emotions which may arise and knowing that they may be normal and legitimate in destabilizing situations can prepare a person to cope with them and reduce their impact.

Pain:

Pain is what a person feels when the body and soul indicate that something is wrong. It can be felt in the four dimensions of life: physical, spiritual, emotional and mental. Every person has his own personal and unique way of experiencing pain. Everyone has a different threshold of tolerance when faced with pain. Although people who tolerate pain are often seen as strong and brave, it is important to remember that no one should have to uselessly endure pain. It is a signal of distress given by the body and soul. We must describe and discuss our pain with the people we trust.

Everybody conceives pain in his own personal way. Some people refuse to face pain because it means that death is close by. For others pain is precious because it is a sign of life. Others believe that they deserve to suffer because of the harm they’ve done or because they are HIV/AIDS infected. Although pain is physical, it gives rise to several emotions and difficult issues.

Different Types of Pain

There are different types of pain which have their own particular aspect. Knowing them can help us
respond to them. Acute pain is felt in a specific part of the body and can easily be identified. The pain is sharp, intense and shortlived. A person with acute pain can show facial contortion, cry, moan, sweat, be agitated, nervous or tense, avoid movement and protect the painful area. Chronic pain is vague, diffuse and hard to support. It is linked to chronic illness. Its intensity can fluctuate or
it can be constant. It considerably weakens the person. The body adapts itself to chronic pain and therefore few physical signs can be seen. On the other hand, the person’s mood can
be altered. Frustration, anxiety, irritability, loss of appetite, depression and suicidal tendencies can
be observed.

Emotional pain comes from intense spiritual, psychological or emotional suffering. However, it can affect the body and give rise to physical symptoms. Even though it is hard to perceive by other people, emotional pain is just has real and difficult to cope with.

Pain Relief Techniques

There are several pain relief techniques. The use of medication is fairly widespread but there are
alternative pain relief therapies. Medication is sometimes the last resort when the pain can no longer be tolerated. It is usually effective and relieves the pain quickly. However, people don’t always react the same way to a product. In some cases, the medication does not relieve the pain and some products can even lead to side effects which are also hard to tolerate. The choice of medication
must be made wisely. Alternative pain relief therapies include distraction, day-dreaming, massage, relaxation, therapeutic touch, skin stimulation and acupuncture. Here is a brief description of these therapies. Warm and respectful human contact is always comforting and soothing for people who suffer.

• Distraction is a way to take the person’s mind off the pain, either by listening to music, taking up a hobby or just having a conversation with a loved one.

• Day-dreaming is a technique used to stimulate a person’s imagination and to take a journey into a more pleasant world.
• Massage is used to bring soothing and comfort through muscle and skin manipulation.
• Relaxation can relieve tense muscles, fatigue and anxiety. It can also increase the efficiency of other pain relief techniques.
• Therapeutic touch is a technique through which hands are pressed on a person’s body to release energy zones.
• Skin stimulation is similar to massage but it is a technique through which heat, ice or pressure is also applied on the body.
• Acupuncture is a technique through which needles or laser beams are applied to the body’s important energy points. It is used to block out the pain.

Loss:

People living with HIV/AIDS are often faced with loss. Not only do they have to live with the thought of dying, but they also have to deal with losing control over their body, physical capacities, self-image, work capacity, mental functions, social role, as well as family and friends. All of
these types of loss are hard to cope with and give rise to a tremendous amount of grief for people living with HIV/AIDS. HIV/AIDS infected people faced with loss don’t always react the same way.
Most common reactions include fear, anxiety, guilt, denial, anger and depression, all of which are
completely normal in these circumstances.

Hope:

People living with HIV/AIDS need to know they won’t be abandoned, that they will always have someone to talk to and that there is always hope. This is what keeps us alive and helps us to keep on going, even in times of great loss and grief. Hope also helps people take care of themselves. Throughout their journey, people living with HIV/AIDS can express hope in many different ways. First of all, people hope that a cure will be found and that they will be spared by the perspective of death that comes with the diagnostic. Afterwards, when they realise that a cure won’t be found in time, they often hope that a treatment will help them live as painlessly as possible and in the best intellectual conditions. When death is at close hand, they hope to live until Christmas or until a loved ones birthday. Finally, some wish for a peaceful death. Not every person living with HIV/AIDS expresses hope in this order or in this way. However, it is important for everyone to keep on hoping.

Discrimination:

Everyone who is physically or mentally different risks facing discrimination. Ignoring, making fun of, insulting, avoiding, pushing, denying a person his or her rights or excluding them from a community or group are all types of discrimination. People act this way through lack of understanding, fear or
ignorance. Discrimination is sometimes hidden. For example, an employer may cite false reasons for
firing an HIV-positive employee. Discrimination can be very difficult for people infected by HIV/AIDS, who need to feel supported by their community and loved ones. People faced with discrimination can feel rejected, angry, sad, disappointed, guilty, lost, helpless, lonely and terrified. Some people lose their self esteem and may even develop suicidal thoughts.

People living with HIV/AIDS who are drug addicts, sex-trade workers or bispiritual may face even greater discrimination. They may feel even more guilt and regret. Being Native also has its share of
prejudice and discrimination. Being Native and having the HIV/AIDS infection can be even harder when living in a community that is unaware of the facts or when social ties have been broken. Fear and misunderstanding can lead Band Councils to force HIV/AIDS infected person to leave the community. This type of rejection is dramatic given the native concept of community and solidarity. Discrimination and all the feelings that come with it make it even harder for HIV/AIDS infected people to fight for their life.

Experiencing Major Distress

Some living conditions lead to major distress. In the case of people living with HIV/AIDS, it makes it even harder for them to find a certain balance in a situation that is already difficult and painful.

4.5.1. Prison

Living in prison is a difficult experience. Different living conditions, the restrictions on personal and intimate contacts, the resurgence of feelings of guilt, of rejection, misunderstanding and affective disassociation can greatly disturb many people. There is a high level of stress amongst people living in prison. In addition to the emotional dimensions of prison, there is a high risk of disease transmission.

The main purpose of prison is to place people who break the law in confinement. Confinement is imposed to protect society from criminal acts. However, the State is still obliged to respect every inmate’s rights. Everyone is entitled to adequate health services and to a lawyer. On the other hand, people living in prison aren’t protected from HIV and other diseases, like Hepatitis C. As a matter of fact, numerous people seem to have contracted HIV/AIDS while they were in prison. About 1 out of 600 people in the Canadian population is infected with HIV/AIDS (not counting the people who are unaware they have contracted the disease). In Canadian prisons, 1 of every 100 people lives with
HIV/AIDS. Studies9 have shown that in some parts of prison, 1 out of 9 people is infected by HIV/AIDS. As we have already seen, the number of Native people as compared to the general population is even higher. The same situation seems to apply in prisons. Women are also highly at risk of being infected while in prison. Inmates are offered very few means to protect themselves even though it is widely known that many engage in unsafe homosexual encounters or use injection drugs. By turning a blind eye to such situations, very little is done to help inmates protect themselves who consequently engage in even greater risks. The Canadian correctional system is more and more open to visits from community members, healers or even elders. It makes the whole ordeal of living with the disease in prison a little more bearable.

Stress:

Living with HIV/AIDS implies several changes and physical, psychological, spiritual, social, emotional and mental ordeals, all of which can be very stressful. One of the most difficult challenges is the financial aspect of HIV/AIDS. Medication is expensive; people often have to stop working because of the symptoms and side effects, and therefore live in poor economic conditions. HIV/AIDS and poverty are both part of the same vicious circle. Stress is a normal feeling whenever the body or mind perceives danger. However, intense and constant stress can be harmful. It can weaken the immune system of People living with HIV/Aids. Several things can be done to reduce stress.

Alternative and complementary therapies are interesting because of their relaxing aspect. Exercise, humour and hobbies can also reduce stress. Some people prefer to be directly confronted to stress to reduce its impact. Relieving stress can lead to the end of an oppressing relationship, a new job or moving from an uncomfortable apartment.

Substance Abuse:

The use of narcotic substances such as drugs, alcohol, solvents or medication alters our physical,
psychological, emotional and mental state. That is often why people use them. However, because drugs alter a person’s state, the body and mind are also perturbed.

Coping with HIV/Aids

An altered state of mind can expose people to dangerous situations. Because of substance abuse, some may engage in unsafe sexual encounters or share an injection needle. Furthermore, it can also lead people to forgetting their appointments or medication. Substance abuse is disruptive to all aspects of everyday life. These habits reduce the quality and life expectancy of people living with HIV/AIDS, especially when opportunistic infections appear. Because of their substance abuse, people may not allow others to help them. They may have low self esteem,
very little group support or feel they don’t deserve a better life, and therefore refuse to take care of themselves. Substance abuse or the struggle with quitting can lead to mood swings and uncomfortable side effects. Even though complete withdrawal may seem like the best solution, in several cases it is impossible. When drugs are used to escape or to find comfort, the situation may lead to change after the diagnostic. However, some people manage to take control over their consumption. The most important thing to do for people who abuse substances such as narcotics is to help them gain control over their life and increase their self-esteem. This can be done by letting
them make their own choices, telling them how to reduce the risks associated to their substance abuse and by bringing them moral support.

Alcoholism:

Alcoholism is a major problem in some communities. Prolonged alcohol abuse is physically, mentally, emotionally and spiritually harmful for a person. As for any other substance abuse, it alters the person’s state of consciousness. It often leads to fighting with their loved ones or the loss of trust in others. It can also leads to broken or damaged support networks. As they are faced with an involuntary and misunderstood solitude, alcoholics often tend to consume even more to forget the pain it causes. The vicious circle of alcohol or substance abuse weakens a person’s strength and will to fight against HIV/AIDS.

Emotional Dependency:

Most people have to cope with some kind of emotional dependency. We are all more or less attached to our loved ones and to our spouse. However, some people express unhealthy attachments. They are unable to make any decisions without the other person’s consent; they abandon everything for the other and sacrifice themselves to fulfill the other person’s needs. Emotional dependence can lead to very difficult situations, especially because this type of person often ends up with a dominating spouse. Consequently, the dominating person imposes everything and the dependant one complies by fear of losing the other’s affection.

Someone may accept to have unprotected sexual relations in order to please the other. When being
subjected to another person’s will, a person forgets her own feelings and opinions and loses all self-respect. Unfortunately the person is at risk of contracting a disease such as HIV/AIDS. An emotionally dependent person living with HIV/AIDS may go through a difficult period. Not only is the
person faced with the fear of losing the other’s affection but must also cope with discrimination, guilt and reject. The resulting tension can lead to a point of no return and force the person to choose between herself and others. Even though some cases have reported for men, it seems that women are the ones most affected by emotional dependence. They are often unable to leave their husband even if they are victims of violence or abuse because they are incapable of existing outside the other. This reality can also be seen in native communities. In some cases, economic and social dependence are also part of the emotional dimension. Helping a person to pick up the pieces,
to discover her own tastes and to make her own choices can show the person that she can take charge of her life. A person can assume her own identity by regaining self-esteem and control over her life.

Violence:

Violence can be verbal, physical, sexual and emotional and exists in every social and ethnic group, as well as in native communities. Every type of violence is harmful, both for the victim and the person perpetrating it. A violent environment leads to higher insecurity, high levels of stress, constant mistrust, violent attitudes, prompt responses, which are usually inappropriate, fear, humiliation and so on. Violence harms not only the body but also the mind, the heart and the soul.

Death and Funerals:

People living with HIV/Aids often die from diseases related to the virus. Although death is predictable, death does not follow any prescribed order or sequence. However, certain signs can be seen in a person at the approach of death: loss of appetite, spasms through the whole body, difficult or intermittent breathing, tense muscles and different skin colour. These signs can wax and wane and aren’t all present at the same time. Death comes when the person feels ready to die. The person might wait for the presence of a pet or loved one before leaving. Dying people don’t always seem to be aware of what is going on around them. Some are in a coma or semiconscious state, while others sleep most of time and awaken every once and a while. It is often hard for them to recognize time and space and they don’t always recognise the people at their side. However, it is important for them to experience peace, calm and affection so they can die as peacefully as possible. Some people believe that although someone is in a semi-coma, the person can feel and
hear what is going on. It is not easy to lose a loved one or someone we’ve taken care of. People take it differently and there is no single best way to react. Witnessing someone’s death can be experienced as an anticipation of what our own death will be like. It is important to respect our emotions and those of the others. Some people will want to touch the dying or dead person, while others can’t even bear to look. Everyone should try to say goodbye in their own way. Death is also part of our life cycle.

Caring for the caregiver

Caregivers are those who take care of others. Their responsibility implies giving a tremendous part themselves, love, respect, generosity, having an open mind, understanding, listening and having a warm heart. Taking care of others also brings a lot to the caregiver, such as feeling useful, earning recognition and self-esteem. However, the caregiver must be able to take care of him or herself in order to be useful. There are several difficult challenges that come with taking care of others, especially for people living with HIV/AIDS. Although there has been medical progress and despite all the efforts invested by the caregiver, people living with HIV/Aids ultimately end up dying. Even though they know this, caregivers can exhaust themselves by trying to beat the odds.

Taking Care of Yourself

The caregiver’s best tool is himself, as a human being with his strengths and weaknesses, courage and generosity. In this frame of mind, taking care of yourself means you can take care of others. It also implies that you have to take care of every dimension of your person, the same as you do when taking care of others. There are several ways to take care of yourself. The caregiver has to take time for himself, to rest and to renew his energy. Such moments can be taken in the enjoyment of an
activity or in spending time with close and loved ones. Humour and communication are important when taking care of yourself or of others. Relaxation, exercise, communication, self-expression through music, arts and crafts as well as hiking are good ways to take time out for yourself, to unwind and to evacuate whatever feelings you may feel as the result of attending at the bedside of a sick person.

Talking about your experience with the health care team, health professionals, family or volunteers can help to put things in perspective and to find group support. It is very important to find ways to take care of yourself so that you are able to take care of the patient.

Burn Out and Depression:

Sometimes the caregiver can no longer take care of himself. In some cases, people choose to take care of others to amend for past mistakes. When taking care of a dying person, the suffering we put behind us may resurface. If the caregiver already feels like a failure, the patient’s death can be seen as another personal failure. Exhausted caregivers often fall into two states, either burn-out or depression.

Burn-out

When the caregiver can no longer take care of himself, his strength weakens, which usually leads to exhaustion. He keeps on going because he considers that the other person is more important. Not only can this lead to physical exhaustion but also to emotion, mental and spiritual exhaustion. When this point is reached there is no longer any energy left, neither for the caregiver, nor for the patient. This is known as burn-out.

Here are some of the symptoms:

• Constant fatigue;
• Working more hours or being absent more often;
• Feeling useless except when working;
• Feeling unusually pressured when friends or family ask for a favour;
• Feeling emotional or angry towards the patient;
• Feeling depressed or indifferent towards the patient;
• Headaches or sleep disorders.

Depression

Depression sometimes appears when the caregiver takes whatever is happening to the patient personally. Highs and lows become harder to deal with. The person feels sad, guilty, useless, depressed, edgy, overwhelmed, and unable to be happy. The person may lose interest in his
sexuality and may have sleep disorders. Depression also has an impact on the person’s mental dimension. It becomes harder to concentrate, make decisions, see the positive side of things, and easier to criticize and blame yourself for everything. When the symptoms of depression and burn-out appear, the person is clearly unable to take care of others. It is therefore important to prevent these states by taking care of yourself for example, by taking part in a sharing circle.

Sharing Circles:

A Sharing Circle is a group in which people can express their feelings, thoughts and emotions; it is also a where people listen to others. Empathy, listening and respect and acceptance are at the heart if this experience. Unconditional acceptance and understanding are the Circle’s great strength. It lso allows people to regain the energy they have lost. Each circle is unique because it takes shape from the people who are part of it and is therefore different from one nation to the next because each nation has its own concept of the Sharing Circle.