The reaction by a person being told they have HIV is often and very understandably very negative. Most people, even in the most undereducated countries in the world, understand very well that HIV is a life-shortening disease. Depending on a multitude of physical, mental, and socio-economic factors, living with HIV can be a horrendous damnation in which the person is shamed and shunned for the remainder of their life, or it can be another chronic illness among a list of others. In the United States and the United Kingdom, most people today who are the most susceptible consider HIV to be no more serious than diabetes. The aim of this short report is to provide a brief window into how HIV is managed by those who are diagnosed with the disease throughout a few different parts of the world. The method of approach will be by using the modified Kubler-Ross 7 stages of grief, with a following statement about what we need to be able to do as healthcare workers to provide compassionate and loving care.
Before diving into the stages of grief (Edwards-Dreiden, 2015), it is very important to understand the reasons that people become sick with HIV HIV is still experiencing growth because it is often perceived that HIV is no longer a disease to worry about. In fact, in growing numbers, an individual will infect their willing partner as a symbol of their love and commitment to each other, it also goes by the slang term “bug chasing” (Moskowitz, Roloff, 2007). This understanding of HIV is just as ignorant as those who genuinely do not even know how HIV is spread, as is the case in parts of Southern Africa (UNAIDS, 2013). No matter what economic background a person or couple comes from, it does not put them at any less risk of becoming infected.
Usually, after the person realizes they have disease, no matter by what means, they are impacted negatively. After the discovery that a person has HIV, regardless of how it was contracted, they often find themselves going through the seven stages of grief according to Kubler-Ross — shock, denial, anger, bargaining, depression, testing, and acceptance.
The first stage of grief is shock. When a person is told something that causes them to go through any sort of trauma, whether it is that they have a disease like HIV, or that someone has suddenly died. The instantaneous reaction is to go through a type of paralysis, both mentally and physically. This can be as extreme as the nervous system of a person shutting down, failing to react to stimuli, or the person may be momentarily short of breath, unable to comprehend speech (Jaffe, Segal, and Dumke, 2005). It usually only lasts for a short period of time, though the person may need to be evaluated for mental and physical well-being before being released. This is assuming that the person is finding out in the presence of a counselor or in a hospital, and not just a tent, like those that exist in the poorest parts of the world. There, they may still be sent home to do deal with the shock on their own terms. Shock is probably the purest form of a physical response to the discovery of an illness.
The second wave of grief is denial. This is accompanied by a person being more productive than they usually are, showing a face of questionably high emotional status in public at all times. People will sometimes avoid being alone during this time, instead choosing to hang out with friends, celebrate whatever is going on outside of their own lives. By actively not engaging in their own life, the goal is usually just to forget or disavow what they were told by the counselor, nurse, or doctor (Schweitzer, Mizwa, and Ross, n.d.). Unfortunately, during the initial stages of HIV, the CD4 count can dip pretty low, subjecting the person to more illness (Hoffman, Griensven, 2010).
The virus itself can cause cold-like symptoms in a body that is not yet used to this invasive antigen. It is usually these very first bouts of feeling weak and ill that a person is forced to deal with the disease on some level. Usually, the person will become a patient at this point, and move beyond denial to the next stage. Here is our opportunity as health professionals to really begin to comfort and educate the patient, and provide them with every resource that is available both online and locally. We need to be there to ensure that their CD4 count and viral loads reach manageable levels and hopefully with person to help go through the next steps of treatment (Hoffman, Griensven, 2010).
The next step of grief is anger. If one imagines being told that they will face a shortened lifespan, and one in which they are marginalized the entire time, regardless of what type of society they live in, it is easy to also imagine the self-loathing that exists when a person does realize they are sick (Schweitzer, Mizwa, and Ross, n.d.). Hopefully the person has begun to start telling friends what is going on, so there can be some understanding for why the anger exists (Schweitzer, Mizwa, and Ross, n.d.). This also seems to be present in every society. Anger can be healthy emotionally, but only if it is channeled in the right way, such as focusing that anger on fighting the illness they now know they have (Post, Ng, et al, 2014).
Bargaining often follows anger, however it is not always witnessed in all patients. This seems to be dependent upon religious beliefs and how much of a support network the person has to back them up. Sadly, in the underdeveloped parts of the world, this can often be the final step. With limited help from their community, and few resources added in with extremely high rates of infection (some countries have close to 50% infection rates!), they are bound to succumb to the disease without ever having treatment options explored, and without ever reaching acceptance over their disease. They’ll even die before the illness has become AIDS.
For people lucky enough to survive this stage, the next is often depression, and this is also perfectly understandable. The person has been told they have a horrific disease that, to this day, still remains incurable outside of very specific circumstances. They have gone through a tumble of emotions, from feeling very up, to feeling down, everywhere in between; and they have lost their bargaining chips, unless they happened to also have a certain type of cancer, needed a bone marrow transplant, and received it from a donor who lacked the CCR5 pheno/genotype (Lopalco, 2010).
Deep depression can settle in. The symptoms of depression range from getting too much or too little sleep, eating too much or too little (often with HIV, it is too little), and withdrawing from life, in the form of no longer engaging in relationships or friendships, struggling to keep up with standards at work, and keeping to one’s self (Canadian AIDS Society, 2014). Many people do not recognize these symptom as being in a state of depression, which makes it vital for the patient’s healthcare team to field questions and maybe help the patient access how they are feeling, and prescribing the right medications and giving the right types of cognitive therapy to help the person feel better (Post, Ng, et al. 2014).
The next step is testing, probably the second most valuable step that a patient goes through in their illness. They take the disease for what it is and learning as much as they can about it. They will often test out alternative therapies, especially if the doctor has not yet prescribed them with a drug. Intervention should only occur if the patient is making a detrimental choice (CDC, 2009). Testing is when a patient truly begins to take their lives back.
Finally, there is acceptance. Acceptance is all-encompassing. The patient works with their team to receive the best results. They are active in their own lives again, and perhaps incorporate being around other happy HIV-positive people to continue to learn how to manage the illness and struggles, and ultimately how to become a stronger person after going through the merry-go-round of grief and growth through having a disease that they can still live a long life with. They are probably reintegrating into a normal work schedule and time with friends (U.S, Dept. of Labor, 2012) Our job as healthcare workers is just to make sure that all the patient’s needs are physically met, and that any residual depression is kept in check (CDC, 2009).
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