The 13 March 2010, marked the 27th anniversary of my diagnosis with HIV (only it was known mostly as GRIDS [gay-related immune deficiency syndrome] back then, at least by my doctor anyway). That day, 27 years ago, I was told I didn't have more than six months to live, yet here I am, still going strong.
Now, reality is that back in March 1983 there were no tests for HIV, however based on blood work taken in March 1983, my immune system was already severely compromised and based on what little knowledge was available around HIV back then, the wisdom of the day indicated I was on borrowed time.
Blood was drawn by the Los Angeles Men's Study (LAMS) at the University of California, Los Angeles, in the USA and frozen. When the HIV antibody tests first came out, the sample was confirmed as being highly reactive to both the Western Blot and Elisa methods of testing, in late 85, early 86. I have subsequently had in excess of 35 independent HIV tests (I was involved in numerous research programs for many years) and every one of them has reconfirmed my HIV status.
Redefining HIV
So, I have been around HIV longer than most and more often than not, people always ask me how I did it. How did I manage to keep healthy for almost 22 years before needing to go on ARVs about four years ago? How did I keep my mind and my soul healthy? How did I mange to thrive despite living with HIV in a world that has for the most part not been too HIV friendly up until a few years back?
Right off the bat I can tell you that I was not socialised, nor conditioned for success. Quite the contrary, I was conditioned to be a failure. I had numerous learning disabilities and back in the late 60s and early 70s people knew almost nothing about things like dyslexia, hyper activity and attention deficit 'disorder'. With the exception of one or two people in my youth, pretty much everyone else had given up on me. I was destined to be a failure and because so many people said I would amount to nothing, I started to believe it.
By the time I was 16, I had been expelled from all but one school I had ever attended. I was a high school drop-out and I started down the path of numerous addictions including drugs and sex. I felt less than adequate and I would do whatever it took to 'fit in'. I used sex as a way to feel connected to other people and to fit in. I was desperate to be loved.
If we look at HIV, it is the body's inability to differentiate Self from Non-Self. How is this any different from low self-esteem and external locus of control versus internal? HIV is an identity crisis at an immunological level.
I did not come into the world of HIV, resourced and educated. I knew precious little about my body and even less about the immune system and HIV. I was infected with a virus, but not the knowledge of what HIV is and what it does.
Many people make the mistake of assuming that because someone is infected with HIV, that they are a subject matter expert. A few are, most, however, are not. That took years of studying, asking questions and doing thousands of hours of research to educate myself about the disease I live with. It was only with this knowledge that I was able to make informed choices about how I was going to learn to live with HIV versus die from it.
Keeping the soul (and body) healthy
Over the years, I have developed a way of being that serves me and below I have tried to capture the essence of what I have done to help myself in the hopes that it inspires others to do the same. I do not for a moment think that I have all the answers. All I am doing is sharing with you what has worked for me.
- Educate yourself. Learn everything you can about your disease so you can make informed and educated decisions around your health. Education is the quickest way to move out of victim consciousness.
- You are not powerless against HIV. You can co-exist with HIV. There is no 'the way'... there is only your way.
- Choose life and act accordingly. Do away with or drastically reduce self-destructive behaviour that does not support life and longevity.
- Stop worrying about what other people think of you. What they think of you is none of your business.
- People will treat you the way you teach them to treat you. What is your role in the way people act towards you?
- Choose to have people in your life who enhance you and your life, not those who want to change you.
- Create a compelling future. If you can't see yourself alive and thriving in five years or 10 years, all your efforts will be in vain. Plant a fruit tree with the intention of eating its fruit in five years. Draw up plans of that house you have always wanted to build. Dare to dream.
- There is no such thing as false hope when it comes to a future dream.
- There are many scientifically proven methods to enhance your immune system function and by giving it the resources it needs to do its job, you will be helping your body control HIV.
- Learn about your medications, how they interact with HIV, with foods and other medications. Knowledge is power only when it is put into action.
- Until you need ARVs find ways to enhance and balance your immune system. The healthier your body, the harder it is for HIV to do its damage.
- Practice proven methods to reduce viral activity by keeping your stomach free of parasites and worms. A healthy stomach leads to lower viral loads.
- Take risks IN your life, not WITH your life.
- Focus on your outcome and you'll figure out the method.
- Don't let the worry of what tomorrow will bring as it will rob you of today. Stay in the moment as much as possible.
You will notice that most of what I have suggested is psychological in nature as I believe, along with many people living with HIV, that a large part of HIV is in the mind. Yes, there are many things we can do physically to help ourselves, however, if your mind is not on the same page, many of your efforts will amount to little more than lip service.
If you get your head right, your body will follow its lead.
David first published his story as a blog post to AF-AIDS on HealthDev.org eforums. We spoke to David and asked to reprint the article in Talkabout as we thought it might be useful for you. If you want to share your own experiences of living longer with HIV, please contact editor@positivelife.org.au [5] or call Kevin on 02 9361 6011.
About David Patient
David PatientDavid Patient was born in Zambia and grew up in South Africa. He spent nearly 20 years in exile before returning to South Africa in 1995. He has been living with HIV since 1983 and considers himself a long-term survivor.
He and his partner Neil Orr, a research psychologist, founded Empowerment Concepts, a program design and training business. They offer community training on issues of HIV/AIDS, food scarcity and positive living (wellness for those living with HIV and those without HIV), as well as leadership development, personal empowerment and wellness education.
David has published several books, including Positive Health, Choices (an up-to-date book for ordinary people about HIV/AIDS), Sex Secrets (life skills for teens and young adults), and The Healer Inside You (a PNI-based at-home therapy protocol).
He writes to inspire others to find what works for them, as he has done for himself.
You can find out more about David by visiting his website: www.davidpatient.com [6]