David Ross Patientauthor and long term survivor of HIV
Until about 1988/9, researchers did not know that there were people living with HIV that were not developing AIDS and dying. There is a reason: Until that point, most people who entered the medical system with HIV were really sick with AIDS, and died. There were no ARV's at that time, though research trials were being done. Obviously, if you were not sick, you didn't go to the doctor, so no-one knew about the 'healthy' HIV-positive people. That all changed with the LAMS (Los Angeles Men's Study; University of Los Angeles, School of Public Health): Stored blood (collected from 1977 till the early 1980's) from a study on hepatitis in Los Angeles was analyzed for HIV antibodies. It was found that a significant number of these men has HIV, from as early as 1977. These men were traced, to see how their health was doing. In many cases, tracing these men took years. As expected, many had developed AIDS, and many had died. However, what was curious was the fact that some were still healthy, even unaware that they had HIV. This was a new discovery: Some people can live many years with HIV, without developing AIDS (Long Term Non-Progressors), and some people's immune system declined more slowly than normal (Long Term Survivors). This discovery initiated a great deal of research. Incidentally, I am not sure what happened to the LAMS study - I think it became MACS (Multicenter AIDS Cohort Study) in 1984, which is still running, 25 years later.
The first public discussion of the existence of Long Term Non-Progressors and Long Term Survivors occurred at the 10th AIDS Conference in Yokohama, Japan, in 1991. Interestingly, it was also at this conference that the 'experimental' measurement of viral load to measure the progression of HIV was first discussed publicly.
The first point of this little bit of history is that the idea that people can live - not die - with HIV only became known about 10 years after the public became aware of the HIV/AIDS pandemic. A great deal of the HIV=AIDS=Death messaging we try to counteract today comes from those first 10 years, when it was believed (incorrectly) that having HIV always - 100% - led to AIDS and death.
The second point concerns those Long Term Non-Progressors, and Long Term Survivors: How did they do it? How did they survive - some of them very healthy - before ART, for so many years? For example, I personally know someone whose blood sample from 1978 tested HIV-positive, and who is still healthy and well. And yes, he is currently on ART.
As for myself, my CD4 count when I was diagnosed in 1983 (March) was 362. I was diagnosed as having AIDS (then called GRIDS) based upon my symptoms, as there wasn't an HIV test in 1983. However, blood taken in 1983 was stored and tested, and found to be HIV-positive. I was invited to join the LAMS study in 1984, and was studied twice a year until 1994, when I returnrd to South Africa.
As you can see from the medical records, at the time the Yokohama Conference (1991) was discussing Long Term Non Progressors for the first time, it had been eight years since my diagnosis - I have no idea of when I was actually infected; I estimate it was in about 1979/1980 - and my health had changed from close to AIDS (CD4 of 362) to an astonishing CD4 count of 2002.
In 1995 I met Neil Orr, who was completing his Masters' Degree in Research Psychology at the University of South Africa, at the ASET HIV/AIDS clinic in Cape Town. He was conducting research concerning the connection between a range of psychological factors and CD4 counts, and the speed that CD4 cells declined since infection. He was particularly interested in the group of longterm survivors and non-progressors that I was part of, and a series of discussions led to my return to South Africa, and setting up the company Empowerment Concepts, which Neil and I run together. Our main focus - initially - was PNI workshops for people living with HIV, based upon PNI research and longterm survivor studies.
Basically, PNI is the relatively new areas of science that examines the connection between psychosocial factors - how you cope, stress, loneliness, depression, love, etc - and immune functioning.
Over the years we have interviewed many longterm survivors and non-progressors, mainly informally, at their homes, at conferences, and during the course of our work, testing various hypotheses about what makes these people different, from a psychological perspective. The following are some of our conclusions:
Although this seems rather odd, I distinguish between by mind/soul and body: My body has this infection called HIV, and that is just the way it is. However, how I think and feel is up to me. I am not a victim in this situation, unless I allow the infection to enter my mind and soul. I choose not to do this. Very few things can anger me more than when people describe me as an 'AIDS Sufferer' or "AIDS Victim', because I am neither - I can only become a victim or sufferer when I allow HIV to take over my mind and soul. I live with HIV and AIDS, in my body. My mind and soul are not infected with HIV.
Psychologically, I am told that I have a 'strong sense of self', which has profound consequences in the way I see and interact with the world, which you will see below. It is also fascinating - and perhaps connected - that the immune system itself is fundamentally the ability of the body to tell the difference between self (body) and non-self (germs). Many of the LTS's ands LTNP's have a similar strong sense of self: The are quite individualistic, seem to have little problem expressing themselves, and do not take other people's opiniions to heart, until they have checked it's validity themself.
One of the practical outcomes of this sense of Self is in the area of expressing thoughts and feelings, versus suppressing these feelings and thoughts. PNI research has shown time and again that the suppression of emotions is a powerful source of chronic low-grade stress, which systematically and persistently weakens the immune system. The simple act of writing or talking about your real feelings relieves this stress, lowers cortisol stress hormone levels, and helps the immune system.
In contrast, the classic 'nice person' - the person who is very careful not to upset people, would never think of expressing anger - is chronically suppressing their immune system. They rarely do well with HIV (or cancer, apparently), which is the origin of our provocative statement: 'Nice people die faster'. Nowadays this 'nice person' would be classified as a Type C (cancer-prone) personality.
One of the key factors distinguishing those who do well, versus those who do not - concerns the presence or absence of a vision of the future, in which the person exists in that future vision. I need to be careful how I describe this 'vision' factor: It is not so much a specific goal as it is a strong (emotionally) visual image or mini-movie where I am doing something meaningful. In my case, I had a vision of telling a story to a huge number of people, about a time when there was this thing called AIDS. I have/had no sense of how this was going to happen - just that I felt it happening, as if it was happening right now. This future felt real. Almost every LTS and LTNP has had a similar 'flash' or dream, with a similar level of intense realism involved.
When we noticed how many people deteriorate rapidly after being diagnosed with HIV, we began to wonder what the biological factors could be, and how this was connected to their mind-set at the time of diagnosis. Our conclusion is that a great deal of how this works concerns a part of the brain called R.A.S. (Reticular Activating System). Basically, this part of the brain determines what you will - and will not - notice, as it's function is to filter out what it considers to be unimportant, allowing you to focus and be aware of what is important. Obviously, this is a pretty important survival mechanism: A hundred thousand years ago, when our brains were being hard-wired to the point where they are today, it was pretty important to notice a lion, and not so important to notice the flowers next to the lion! Even today, R.A.S. does the same thing: A person who lives in a noisy place quickly gets to a point where they simply don't hear (notice) the noise; You can hear your name being used across a room full of people, but not much else that they are saying across the room; A mother 'knows' what the cry of a baby means (hungry, wet nappy, needing attention, in pain), just be hearing it. There are many examples of this R.A.S. functioning in our lives. The downside of this is that whatever is contained in your R.A.S. becomes a self-fulfilling prophecy: You only see and hear the evidence for what you already believe in, and ignore the evidence to the contrary. This is probably why sexism and racism are so difficult to change.
What happens when a person gets this diagnosis? In my experience, the future of that person, healthwise, is heavily influenced by what they believe before they get the diagnosis. If they believe that HIV=AIDS=Death, then the diagnosis lead to a sudden destruction of their perceived future, and they simply retreat from the world, waiting to die. They will also have problems adhering to treatment, taking care of their health, and so on. Every sneeze is interepreted as a signal that they are dying. So they die.
Therefore, one of the most important things we can do to enhance post-test health, adherence to treatment, and proactive health-seeking behaviour, is to ensure that the person has a strong R.A.S.-based vision of a meaningful and healthy future.
The challenge with installing or creating such as R.A.S.-based future concerns the fact that R.A.S. does not respond to emotionally-weak 'wishful thinking'. It only responds to emotionally intense events and processes. Also, the contents of R.A.S. are largely unconscious, and it therefore is more of an instinct than a conscious goal-setting process. Thinking about the future has no impact upon R.A.S.: It must be felt strongly. There are indeed processes for achieving this, which we present in the Positive Living training. These are based upon the Circle of Excellence method from NLP (Neurolinguistic Programming).
One of our initial findings was unexpected: Most of the long-term survivors had had a 'chat' with the virus in their body, on a regular basis. Some did it for religious reasons (do no harm), while others wrote letters to the virus, whom they often give a name. I started 'talking' to my virus early in my infection - shortly after the incident on Mount Charleston. I have an agreement with the virus - which I call a 'truce' - that we can co-exist in my body, as long as it behaved itself, and under the understanding that I will not let it leave my body.
Several years later Dr Jon D Kaiser published a book (How to rebuild your immune system) in which he describes how he persuaded some of his HIV-positive patients to write letters to their virus, and he describes how this seems to either stabilise or increase their CD4 counts.
The question is why this method would have this effect: Our explanation is based upon the biological fact that fear and anxiety are major emotions that increase stress hormone levels, especially cortisol. Cortisol, in turn, suppresses the immune system. Many people living with HIV consider HIV as 'the enemy', and this 'enemy' is inside of them. This is a major source of anxiety. Fear of the unknown is a well-known source of stress. By directly entering into a dialogue with this 'enemy' inside, we hypothesise that this reduces the chronic stress levels that the person experiences, thus lowering the cortisol levels, which in turn takes pressure off the immune system.
Most LTS's & LTNP's are not what would be considered the classical 'positive thinkers'. Instead, they are rather pragmatic. This is probably because thee are two types of 'positive thinking': Denial Positive Thinking, where the problem is ignored, and the person distracts themself by focusing upon 'nicer' things. We find this to be a very common attitude, especially when discussing issues like the possibility of illness and death - people don't want to think about it or talk about it. Then there is Realistic Positive Thinking, where the person acknowledges the reality of the problems, and tackles it head-on, with the mind-set that somehow this problem can be resolved.
Most LTS's and LTNP's are Realistic Positive Thinkers, not Denial Positive Thinkers: They have little reluctance discussing health and other problems, joking about death and ilness, but they are not pessimistic about these issues and problems. They simply view them as challenges to be overcome.
From a PNI perspective, this makes a lot of sense: Just because you don't want to think about something doesn't mean that the fear or anxiety is gone. Instead, the unspoken fear simply continues, causing increased stress hormone level, suppressing the immune system. At the end of the day, unresolved chronic fear is probably the most dangerous thing you can do to your immune system.
I have seen relatively healthy peope get diagnosed with HIV, and die within weeks. I believe that fear is the reason for such rapid decline, and also the rigid belief that HIV will kill you. This is the opposite effect of the placebo effect, called the nocebo effect: The power of beliefs that are so strong, they can kill you. This is not new - the effects of death curses and 'voodoo deaths' are well-documented. With HIV, we have been told that we should be terrified of getting HIV because it will cause AIDS and kill us, as part of the standard prevention messaging for many years. Guess what? People believe it, some very strongly. In contrast, LTS's and LTNP's are not very susceptible to believing in authority, and authority-derived messages. They question authority.
I have been a rebel (often without a clue, and more recently, with a cause) since childhood. I was always in trouble for something. I was not a fan of authority, and questioned everything, often to my detriment - and annoyance (and despair) of parents, teachers, and anyone who had anything to do with me. Normally, this would make me pretty dysfunctional - which it sometimes did, such as my drug useage in the 1980's - but this scepticism of authority probably gave me the necessary resistance to the prevailing belief that HIV always leads to AIDS and death. Instead, when I was diagnosed, and I listened to the prognosis - "You will be dead in 6 months" - a part of me said "No ways!". Yes, another part of me became hooked into the inevitability of dying young, but the other part grew stronger over time, always holding out another possibility - that I might live.
Later, I resolved this dilemma as follows: Yes, it is possible that I might die - I have seen many friends and other peope die from this disease. However, it is also possible that I might live - people have survived horrible circumstances all over the world. I can be one of those people that survive this disease, and tell the story. I want to be one of those people that live to tell the story of the time when there was this disease called AIDS.
In other words, instead of believing in the inevitability (probability) of dying from AIDS, I decided that death was just one possibility, with living being another possibility. I implemented this thinking in a very practical sense: One of the first things I did after my diagnosis was to write my will, choose a coffin - I actually tested them by getting inside to ee how comfortable they would be - and choose the music for my funeral. I.e., I dealt with the possibility of dying. Then I went to buy a house with a 30-year mortgage (there were no HIV tests befire qualifying for mortgages in those days). I.e., I dealt with the possibility of living a long time too.
In my mind, it would be silly to just focus upon 'happy' possibilities. Anything is possible, so I deal with all ends of the spectrum: Worst-case, and best-case. When some expert comes up with a new conclusion that seems doom and gloom, I remind myself that this is merely one of many possibilities. The only person who can turn a possibility into a certainty, is myself.
I recall a conversation with a woman from Kenya, whom I shall call Edna, who arrived at the same conclusion for very different reasons: She was a deeply religious woman from a rural area. She was diagnosed HIV-positive and promptly kicked out of her home by her husband, and was not allowed to see her children again. She went to Nairobi to find work and support, and was turned away by the church she approached. Regardless, she believed that she was a loved child of God, and that this was merely a test. She believed she would be okay, and survive. Incidentally, she also arrived at a 'truce' agreement with the virus in her body, from a religious perspective: She viewed HIV as another creature created by God, and therefore had a right to live. Eventually, she found work in a fish factory, and found a church that supported her. Several years later she returned to her village, and through a slow process of interactions, reconciled with her husband sufficiently to see her children again. She was HIV-positvie for over 14 years when we had this dicussion, and was quite healthy. I have not heard from her since that meeting, and I'd like to think she's still going strong.
I do not have much formal education: I has serious learning and behavioural problems as a child, leading to one expulsion after another. I did not complete High School. However, I have spent an enormous amount of time and effort learning about all aspects of my body, mind, the immune system, HIV, treatment, nutrition, etc. The reasons are simple: The more I know and understand, the more choices I have; The more I know and understand about my body and HIV, the more I can help others have more choices in their lives. Most of what we hear and read publicly is a simplified version of the truth - made simple so that the public can get the basic idea of what is going on. However, the simpler the understanding, the less choices there are. The more details and facts, the more choices. I like having a choice, so that I can figure out what works for me. I like the fact that I can have an indepth discussion with my doctor about my health, my options, and I see my doctor as my partner in health.
In both cancer and HIV, the people who question doctors about their treatment options are called 'difficult patients'. It is ironic that these very same 'difficult patients' have a much higher survival rate than those who simply do as they are told. Why? From a PNI perspective, this is connected to the perception of control. The perception of control is not the same thing as actual control. Your brain cannot tell the difference between imagined and actual control! Also, research has shown that a sense of control - no matter whether it is imagined or actual - reduces stress hormone levels, and therefore helps the immune system.
Dealing proactively with fear (anxiety, stress) is a common factor through many of the items listed above. Fear kills. The biology is well-estabished: Fear (of any kind) causes the hypothalamus (in the middle of the brain) to release a chemical called CRF, which activates another gland in the brain (pituitary) to release another hormone, called ACTH. This in turn causes the Adrenal Cortex (a gland above your kidneys) to release cortisol, the classic stress hormone. This whole system is called the HPAC System (Hypothalamus-Pituitary-Adrenal Cortex System). Cortisol suppresses the immune system.
Researchers such as Sue Weidenfeld (Weidenfeld et al, 1990, Impact of perceived self-efficacy in coping with stressors on compoents of the immune system, J. Personality & Soc. Psych, 64(2), pp.283-292) found that a simple counselling method focusing upon confronting fears can reduce cortisol levels by over 30%, and significantly increase CD4 counts (average icnrease of 132), and that this effect is sustained over time.
First, I need to distinguish between spirituality and religion: I am not a 'religious' person. However, I do consider myself a spiritual person in the sense that I am aware of - and grateful for - that Something - which people call God - that created all of this, including me. I have a personal relationship with God, and I have realized that HIV is not a punishment, but is instead an opportunity for me to grow. I know God loves me and would never do anything to harm me. I also know that God's intention with me was to get me to a point where I could provoke and inspire people and apart for my opinion of me, God's was the only other opinion I needed to worry about. What other people think of me is none of my business and I keep it that way. People's opinions of me are a reflection of them and where they are coming from and in reality have nothing to do with me, so I don't get caught up in that game of trying to be everything to everyone and trying to win that illusive 'popularity contest' that so may aspire too.
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