D for "Diagnosis" or for "Denial"?

Coming to Grips with Being Newly Diagnosed

I recently found out I am HIV-positive. I feel great, I'm in perfect health and I don't need to get medical treatment, but friends and parents are pressuring me to start a program. They keep telling me I'm in denial about my status. What do you think?

A Response to This Case Study

Although modern medical research has made monumental steps in this disease, an HIV diagnosis can still imply for many people that intensive medical intervention is necessary right from the start. True or not, this thought process may remain with the general population for some years to come, so it is important for you to know all the facts when questioned on your own personal medical direction.

Your solution to not get treatment may be a reaction to your natural fears coupled with generalizations about HIV. You may also have a healthy skepticism of new medical interventions and wish to avoid investing your time, money and emotions in still unknown treatment outcomes. In many situations this would be intellectually and socially acceptable. However, a slow and steady pace is difficult when there is a universal perception that HIV calls for imminent medical action.

The conflict to start treatment between you and your circle of significant people indicates that you are thinking about it and seeking advice, thus attempting to find a solution. This is great. With any outcome, you need to feel you have control and power in the direction of treatment you wish to take. Right now, you do have the control not to start treatment. However, the more education you can receive about HIV treatment the more powerful and confident you should feel when stating your personal direction.

Over the years, depending on what you see, hear or read, one could receive mixed messages from the media on treatment issues. Debating when to begin treatment is rational and should be explored thoroughly. However, you should also be examining your emotions.

As long as you feel well, common sense might say "why mess with any intervention? If the body works why fix it?" However, it is also important to comprehend that the diagnosis is a warning for your future health, and develop a long-term medical intervention to fight the disease before your health is affected. I am not here to debate either one of these as solutions, but having physical and emotional health coupled with a cognitive and medical intervention may help anyone with any disease. The point I want to state is, you can never know too much about your health and it is always good to stay open to hearing about new approaches to treatment.

If your friends and family imply that you are in denial, I would not dismiss this point. Although your health may be excellent, I would still acknowledge the many emotions that come with an HIV diagnosis. Regardless of the gains in medical or cognitive research, most people would still have a perception that a diagnosis of HIV would threaten their life. This would be a very difficult thought to shake and these thoughts can produce many problematic behaviors, such as denial of your status and a clear reason not to seek treatment.

Stages of Acceptance

Could this be true for you? Based on the psychological research, let's try to break down the possible stages of acceptance that you may be going through in your own situation. This may play a very important role in your decision not to seek treatment.

Elizbeth Kubler-Ross (1969) concluded that people progress through the following five stages when facing their own possible death or other important emotional losses. Denial is usually identified as the first stage. Other stages are bargaining, guilt, anger, and acceptance. There is no particular order to these stages, although they can follow an ordered pattern. These can be applied to an HIV diagnosis and may help an individual gain insight into why they may or may not be acting in a reasonable or unreasonable manner.

Denial: This isn't happening to me, it can't happen, it's not true. For you and for many others recently diagnosed with HIV, impulsive assertions that the test must be wrong, or a mix-up of test results would be a natural and normal first reaction. In most cases you would seek additional testing, just as you would seek second medical opinions. In time, after additional tests were conducted, and the tests continued to produce positive results, a form of acceptance would hopefully begin to take place.

To disbelieve your HIV status would in time be much more problematic. For those who refuse to believe or have 'forgotten' the diagnosis and do not seek treatment of any kind for years, this is much more serious. It is only when the patient has actual symptoms that they then may come to terms with their HIV status; however, by then their health may have been seriously jeopardized. These years in denial may have been put to better medical intervention had the patient come to terms with their status earlier. HIV drug users who continue to use drugs after they have been told substance abuse can damage their health or people with HIV who practice unsafe sex may also be in complete denial with their diagnosis. Not only their health but the health of others was placed at greater risk.

By considering a medical program, you are stating a form of HIV acceptance. Other issues of acceptance are additional choices in medical and social services, the use of medication and the general theory of the programs you may select. This is a time now for you to evaluate many HIV programs and to seek out support groups and medical professionals that you feel will work with you co-jointly currently or in the future. The structure of placing a part of your time in such programs is a way of structuring your stress and concerns, hopefully giving you a sense of control and power over your diagnosis.

As people with a life-threatening illness come to terms with their situation, they may create bargaining strategies with their personal god or a high power or themselves. Examples of bargaining are "Yes, take me, but not until my grandchild appears on stage"; "Please, God I must achieve a real romantic love, before this disease takes me"; "Just 3 more years, I must leave my mark on the world, then I will go." Quitting employment, traveling the world, or reacting in the opposite way to their previous life, may all involve some form of bargaining. This can become a very human way for people to deal with the issues of illness and death. Goals are made, long and short, and bargaining can become a sort of map of the steps one wishes to accomplish in the near future.

Anger: Why is this happening to me? I hate this world and all the people in it! Anger can display itself in acting out behaviors which can take on the form of acting out excess behaviors. Overeating, indiscriminate sexual interactions, and impulsive and aggressive behaviors toward others can all be indicators of anger. It's OK to be angry! This is a disease, and it's not a just, fair world. HIV does not pick or choose, it does not discriminate. However, why not use that anger to fight the disease, not others and seek out the treatments you need and channel it into positive creative outlets? These acting out behaviors can encourage your own isolation. Please don't let that happen: we as humans all need social interactions! HIV treatment groups, held nightly, weekly and monthly, are there for people to vent their special needs. Misery does love company but groups can turn that anger around so you may arrive saddened but leave more motivated and more determined to "beat this disease" with renewed energy from your support group.

Depression: Poor me, what a world, what a way to go, what's the point, I am a dark cloud. Periodically depression and gloom will raise its head; no life is without it and depression as a stage follows no course or order. A treatment plan, medication, support groups, verbal therapy may all help when one is in despair. To fight depression one also needs to be proactive. I'm not telling anyone to walk around with an insipid, plastered-on grin, but to work with mental health professionals and keep your depression at normal levels. Depression can be a sign of acceptance and the possible drive to seek out treatment programs for your own emotional health, so again look at this as a warning sign.

Acceptance: This is it, baby, I have what I have, and I'm going to fight it now, with all I've got, this is my life and I've still got a lot of living to do. Acceptance is not throwing in the towel; it is a level of understanding and continued drive to do the best you can under whatever circumstances that you are given. However, with acceptance comes additional anxiety which denial may have protected you from. Based on your statement to put off treatment, I would also explore how much anxiety you are maybe under? General research states that anxiety can be related to both a person's age and individual personality, regardless of a person's HIV status. Although older adults think about death more often than younger ones, anxiety about death seems to be greatest among middle-aged people. Not surprisingly, anxiety about death is lower among better-adjusted people, that is, among people with high self-esteem, a sense of mastery, and a sense of purpose. The point here is to continue to develop and consider an intervention plan for your HIV treatment so you can strengthen your own sense of power and control. In time, you will hopefully lower your anxiety level and come to terms with your HIV status.

In conclusion, please consider your emotional state when seeking an HIV treatment intervention plan. The various stages of acceptance and your actual health could strongly depend on how you perceive various HIV programs. You are the expert on your health, but your brain can sometimes limit what you may be able to emotionally handle. You can feel a sense of control, power, freedom and even fun within an HIV treatment program. Provided that you are the one taking the steps to comprehend and understand your personal situation and what is the right direction for you. Good Luck.

J. Buzz von Ornsteiner, Ph.D., is a psychologist and behavioral consultant in New York City and writes the "Psychologically Speaking" column.

Back to the October 2001 issue of Body Positive magazine.