A number of people told me they have read my book because they were newly diagnosed and wanted to get some idea of what to expect about being HIV positive. Given the current treatments environment, I think most of these people will have a much easier time than those of us diagnosed in the 1980s, but I would have liked to have talked for longer than a couple of minutes when they have come up to me at a gay bar, at the Midsumma Carnival in Melbourne and, in one case, at a service station.
Here is something of what I might have said to those people who had just received their positive diagnosis, if I’d had a little longer.
Thank you for your comments about my book. I’m glad you found something in it to help you through what is probably a fairly difficult time coming to terms with your positive diagnosis. I really would have liked to talk further with you than our rushed conversation, so here are a few further thoughts on coping with living with HIV.
My first bit of advice is not to believe everything you hear on the subject — including from me!
HIV affects everyone in different ways. Some people go for years without needing to take treatments, others go from infection to diagnosis to treatment within a few months.
Likewise, for some people, the experience of becoming positive is highly traumatic; for others, it is simply be a matter of putting the issue at the back of their mind — something to worry about when the time comes.
I have talked to many people over the past two decades about their feelings about becoming positive and, for most, there is no denying there is an initial shock and a difficult period of coming to terms with what it all means. I can understand you seeking out the experiences of another positive person — talking to someone who has been through the same thing can be one of the most comforting and reassuring things you can do.
Many AIDS Councils and PLWHA groups offer peer support groups where you can meet other positive guys and talk through some of your uncertainties about your diagnosis. If you’re not keen on joining a group, peer support workers and counsellors are often available for one-on-one sessions.
You might be feeling guilty or foolish about picking up the virus, asking yourself how you managed to ignore all the warnings, slip up on your promises to yourself, or fail to recognise the risks you were taking.
Try not to be too hard on yourself. None of us is perfect when it comes to sex (or drug use, if that’s how you came in contact with the virus). There are so many fragile emotions at play when sexual negotiation takes place.
It’s understandable you may feel worried about health problems you may face in the future, but it will only be destructive to punish yourself for your diagnosis. With a little luck and some commitment on your part to taking care of yourself, you can expect to live a long, relatively healthy, and good quality life without too much fear or stress.
When I was first diagnosed some twenty years ago, I was less worried about becoming ill than I was about being rejected — by sexual partners and even by friends who didn’t understand that you couldn’t pick up HIV through casual contact. While I think there are few people these days who believe the latter, there are some people, unfortunately, who still have problems with the idea of sex with a positive person. It is an irrational response if the sex is safe, but it is an issue that I still find myself having to deal with in 2004.
Maybe you will be one of those confident positive people who are able to disclose your status upfront to a prospective partner, thinking that if the person isn’t interested because of your status, then you wouldn’t want to know them anyway. I admire people like that, but I find myself only able to tell people whom I’ve got to know after a few sexual contacts. I rationalise that by that stage a partner will have learnt to find other aspects about me to like, beyond my serostatus.
While rejection is an issue, I’m happy to say that most people these days are more enlightened and don’t care if their partner is positive. Most people in our communities understand that they are also living with the reality of HIV as a part of their sex lives and they know how to protect themselves.
There is always the chance that your prospective partner will turn out to be positive too, and that of course reduces the worry about transmitting HIV.
There are still some concerns about superinfection (where one positive person can pass a different strain of the virus to another, perhaps leading to problems when that person needs to take treatments). This issue remains scientifically uncertain, however, with many positive people taking the view that superinfection, if it occurs to them, is unlikely to create major treatment obstacles.
Becoming literate about all the treatments, tests, opportunistic illnesses and other issues associated with HIV can be a demanding task; just learning the names of the various antiviral drugs or the basic medical terminology can be incredibly daunting, but you’ll get there.
Those of us who lived through the time when there were no HIV treatments, and then the period in the early nineties when the treatments we had were inadequate, learnt to follow the progress of new therapies as if our lives depended on it — because in reality, they did. These days there is a much better understanding of how to treat HIV and an arsenal of different antivirals that can be used against it.
With so many treatments available these days, the focus on treatment has shifted to trying to determine the best strategies for using the drugs to keep people well longer and minimise resistance and side effects.
After combination therapies were introduced in the mid-nineties, scientists had the idea that ‘hitting the virus hard and early’ with treatments would preserve the immune system from damage and be the best for the long term. Then it was realised that people were developing resistance to the antivirals too quickly, limiting their long-term treatment possibilities. The current consensus is that people should start HIV treatments when their T-cells get to around the 350 mark.
There are some doctors who advocate different treatment scenarios, including the theory that it is a good idea to treat people who have just become positive with a burst of treatments to avoid the immune system becoming overwhelmed, and then to introduce a treatment break to help the body recognise the virus and try to mount its own defences to it. If this all sounds a bit complicated, don’t panic: you will have to learn a few basic medical terms like T-cells and viral load, but your doctor should be able to walk you through this without too much fuss.
It will become incredibly important for you to have a good relationship with your doctor from now on. Please try to develop a confident and trusting relationship, and don’t be afraid to discuss your fears, reveal your ignorance about something, or speak up for yourself if things are not going as you’d hoped.
Whether you end up on treatments or not, monitoring what is happening with HIV in your body will involve regular doctor visits (about every three or six months). You will need regular blood tests to determine whether you need to start treatments or, if you are on them already, whether you might need to change the particular regimen.
People with HIV have challenged the traditional idea that doctors are the only source of wisdom when it comes to looking after their health. In the early days when there were few options, many of us looked around for alternatives to Western medicine. Some alternative therapies such as macrobiotics, acupuncture, Chinese medicines and naturopathy, have helped some people, particularly in looking after the immune system and managing side effects. Of course, limiting your vices like alcohol, cigarettes and late nights can also help.
Ultimately for me, it has been Western medicines that have saved my life and I am a great believer in antivirals for those that need them. I have had to endure some nasty side effects, but I don’t think I would still be here without these drugs. Side effects are a reality of life for positive people on treatments, and they can occasionally be very worrying, but most of us manage to take them in our stride most of the time.
Hopefully you won’t need to take treatments for a while yet — and by the time you do, it would be nice to think that there will be simpler, less toxic treatments — maybe a treatments vaccine.
When the time comes to start treatments, your comfort levels have to be right. Taking antiviral treatment involves making a commitment to take them as instructed — or risk having them not work for you.
I hope you also develop a comfort level about the idea of living with HIV, if you haven’t already. It is no longer the stuff of ‘grim reaper’ TV campaigns or sensational stories about positive people being shunned or (for the most part) discriminated against. You can live a very normal life now without the huge uncertainty that was once associated with the virus. I can’t pretend that it is all going to be easy. You’ll most likely have a few scares and a few moments of sadness along the way, but to borrow a line from Gloria Gaynor, you will survive.
And stay a little longer to chat next time! You will find you can gain a wealth of information from other positive people as well as some good old-fashioned peer support. We all need that some of the time.
