One of the most important parts of social work in the HIV prevention and care setting is being available and present when a client finds out for the first time that they are HIV positive. This is a moment of significance for the client -- and often, it is a moment they will remember for the rest of their life. Learning of your HIV diagnosis, like that of any chronic or life-threatening illness, can be traumatic. Trauma often causes grief. In the field of HIV, we often do not do enough in the way of talking about, planning for, and treating grief as it relates to diagnosis and identity. Grief is not just a singular emotion but a host or cycle of emotional experiences and responses.
As I often tell my clients, an easy way to conceptualize grief is in a model called the Kübler-Ross Grief Cycle. This model has been debated by mental health experts who argue that grief is often not linear, and often times does not incorporate all the stages or emotions listed. That being said, the Kübler-Ross Grief Cycle is a good way to visualize and monitor grief for clients and clinicians alike. The cycle shows the progression of emotional experience from denial to anger, depression, bargaining, and into acceptance. The first stage of grief, denial, includes the emotions avoidance, confusion, elation, shock, and fear.
Jay's Path Through the Five Stages of Grief
Take the case of Jay (not his real name). Jay is a Latino man in his early 20s who I met when he came into a community organization I once worked for in southern California. Jay had an early experience with HIV that shaped his negative association with the virus. As a child, he lost a parent to the disease. His living parent associated HIV with fear, and, as a result, so did my client.
On the day Jay received his positive result, I was asked to meet with him by the care linkage coordinator for a behavioral medicine visit. Behavioral health visits, conducted by a licensed social worker or psychiatric nurse, are often used in health care settings to address crisis, shock, fear, and to ultimately support client engagement in care services. Many of our clients only know what they have heard on the streets or social media when it comes to HIV. Unfortunately, much of this information is false, stigmatizing, insensitive, and/or outdated, which causes fear, worry, and uncertainty.
When Jay received his positive result, his first worry was breaking the news to his living parent. In fact, he insisted he call his parent immediately. He called. Then I spoke with him alone in my office after talking for some time in the testing room. Behavioral medicine visits are intended to be short, but sometimes, as in this case, it turns into a traditional crisis intervention counseling session. Jay described to me his fears, shock, and confusion, and then his anger before we wrapped up with a plan for a follow-up appointment at the end of the week.
Anger, the second stage of the grief cycle, includes the emotional experiences of frustration, irritation, and anxiety. There is no exact time frame for how long a client might live in any particular stages of grief or how they will experience any or all of the emotions in each stage. In this example, Jay moved from denial to anger within the hour. Sometimes it is that quick. There have been times when I have had clients stay in denial for years, until they were gravely ill -- and only when forced to choose between life and death did they move quickly through anger, depression, and bargaining. Denial can be as quick as an, "Oh my God, no!" moment, or it can go as long as years of not acknowledging or addressing a diagnosis.
Depression is a normal part of the grief cycle and the one stage we most associate with grief and loss. Depression includes emotional experiences of helplessness, hostility, flight, and feeling overwhelmed. Depression can manifest in several areas of function, including changes in sleep patterns; changes in appetite, thought process, and cognition; changes in motivation; decreases or sometimes increases in energy (speaking quickly, fidgeting, restlessness, or forcing yourself to be overly productive or perfect). Many of my clients hang out in the stages of anger and/or depression. Thoughts of what your future life might be like living with HIV may become consuming, and these are normal. Other thoughts or questions might be: Will I ever date again? Have sex again? Nobody wants to marry somebody living with HIV. I cannot tell my parents or family -- they will be so disappointed in me. People will use this information against me. I hate knowing I have this thing inside and I can never get rid of it. Negotiating these thoughts can be difficult and upsetting, and this is another reason to introduce therapeutic care to all stages of HIV care, particularly during diagnosis.
The final stages of grief, bargaining and acceptance, are a time of internal exploration and external testing. Clients often begin to realign their identities: who I am now versus who I was before. Living with HIV changes some parts of how you see yourself and how you identify yourself. Clients have told me that their HIV diagnosis helped them find meaning or reason for previous behavioral patterns. I have been told that HIV has made them confront parts of who they were that they did not like. For some, it helped them find the strong parts of themselves that they did not always utilize.
Behavioral Health Support Can Give People Tools to Thrive With HIV
Being able to provide support to clients, family, and friends during periods of grief is essential. In the denial and anger stages, those who are grieving most benefit from information and communication. Talking about impact or processing the diagnosis often allows people to conceptualize and find meaning in what will become a new part of their identity. Emotional support is beneficial in the depression stage. There is much power in being present or just listening when people experience depression during grief.
Often times, clients tell me they do not want to hear, "It is going to be OK." They want people to ask them how they feel, where they are now, and what they can do to help. The last stages of grief, bargaining and acceptance, are most supported by guidance and direction. As support systems, we accomplish this by giving the person grieving an opportunity to tell their story or what they have learned, set new plans for love and life, set goals, and find resources or community. Grief often comes to a close when people find purpose and acceptance of the traumatic events and can see a path forward that doesn't compromise their safety, sense of self, and their achievement.
In my experience working with newly diagnosed men and women, this often looks like finding a formal or self-prescribed role in HIV advocacy or education, or achieving a desired relationship or another new beginning or fresh start, or the ability to apply the loss to increase their motivation to achieve an honor. Many of my clients say that finding out that they had acquired HIV was one of the worst days or times in their life. Later, months or years after learning their HIV status, clients often tell me, "Things have gone back to normal" or "I'm doing better now than I was before … I take better care of myself" or "I changed [certain] behaviors."
Grieving an HIV diagnosis is a special phenomenon, because most clients do it alone or partially in secret. Rarely are clients afforded the ability to take time off from work, school, or other obligations to grieve as they would a cancer or other life-changing diagnosis. Clients are often uncomfortable disclosing their status to employers, supervisors, or even family, due to fear of stigmatic response, oppression, vulnerability, and distrust. As social workers, we are aware that clients have these experiences and work to set up or foster emotional support systems or services for clients when they are out of our offices and in the community.
In the case of Jay, he is happy and healthy living with HIV. He is dating someone with whom he has shared his HIV status, and he feels optimistic about the future. I remember Jay once saying to me, "I don't want to live like this … I can't."
The last time I saw him, he said, "Everything is fine now -- I guess it worked out OK."