Thursday, April 11, 2013

Now that you have tested positive you will need to find at least three kinds of support:

1) A counsellor with some understanding of gay/bi issues and HIV who can help you with the consequences of this for you and your family. Whether you are out or not, or have a supportive environment or not, will all affect your interaction with HIV, and it is best to be prepared for both practical and emotional issues, and a counsellor can help with these.

2) A really up to date and knowledgeable HIV/AIDS specialist. This is harder to find than one might imagine despite the large organisational structure for HIV/AIDS. Most private doctors, quite frankly, know nothing about it and the ones with most experiences are in public hospitals. But these are not the easiest of places to visit and in any case their focus is, rightly, on mass treatment, and not quite geared towards someone who is middle class and able to bear some of the expenses of the treatment. In other words, the government/NGO system focuses, as it must, on large scale, free treatment and cannot be adjusted that much to each individual patient. But ideally with a disease like HIV, where each person's prognosis can be very different, this individualised treatment is needed and if you are in a position to get it, you must.

3) A physician who will treat your regular illnesses with some knowledge of your HIV status. While the physician should treat your illnesses for what they are, it is possible that it might be best if it is known that HIV is a background factor, so you need a doctor with some knowledge of this. This may not be that critical at the moment, since you are most likely quite healthy now and will be for a while, and this will not be an issue. At some point in time though it might, but hopefully by then you will be better networked with the HIV support scene. Getting in touch with a HIV support group is also a good option to consider at a later point.

OK, but for now, you need to relax. What's happened isn't wonderful, but its not the end of the world. The problem with HIV is that it comes with all the stigma and fear and in your case this will be multiplied by concerns about your family. But you need to remind yourself that:

a) It is just a disease, it is not a moral judgement on you.

b) It is not fiercely contagious. The saving thing about HIV is, in fact, that it is a virus that is quite hard to get. You need direct contact of certain kinds of bodily fluid - blood, semen, pre-cum (it is there in saliva but at such low levels you don't need to get worked up about it). The virus also dies quite fast outside the body. So you are not risking infecting people by just being around them. (I need hardly say that you have to be careful about sexual partners and if you have had unprotected sex with anyone recently then you might need to consider telling those partners).

c) You can have a quite normal lifespan. One way to look at it is that you have acquired a medical condition like diabetes. This can be serious and cause all kinds of complications if it is not treated, but it is quite possible to treat it and build that treatment into your life.

At some point you will probably need to start taking the drugs and yes, in the past the side effects were not great. But newer treatment regimens have reduced this to a large extent and if you find a good specialist you should be able to increase the chance that you will get a fairly problem free treatment regimen.

As to when you will have to start treatment that is harder to say and it is why a specialist is needed. Please don't listen when doctors says, as they often do, that you only need to start starting treatment when your CD4s cells drop below 200. This is the norm set by the government in connection to administration of free medicines, and it is no surprise that they have chosen a level that makes optimum sense for them (in terms of total cost) as well as the patient.

But you don't have to be bound by this and can decide what will be the optimum point for you. The tendency in the West now is to start treatment much earlier - specialists may recommend starting when CD4s fall below 350, or if they show a rapid decline. Please don't believe one myth that floats around which is that after starting treatment you only have that many years to live. Such claims are based on mass studies, with people who often don't have access to healthy food and living conditions, and this should not apply to you. I hope I don't need to say that you need to focus very strongly on maintaining your health in general. (Alternate healing practices like yoga can't cure HIV, but they can help here, in improving your general health and reducing stress).

What you will have to start doing now and this unfortunately does involve real costs, far more than that of the drugs themselves, is to start monitoring yourself more often. This involves going to a good path lab - I think its best to stick to the large national chains like Metropolis if that's there where you are - and doing a HIV package which will show two things: 1) virus levels and 2) CD4 levels (and other white blood cells). These will vary inversely, but its not easy analysing them - virus levels in particular can vary alarmingly without it meaning much. This is where the specialist is vital.

The cost of the testing package is around Rs4500 and this is an expense you HAVE to find money for, at least in this initial phase as your body gets used to the presence of the virus in it. I would suggest you do tests every 2-3 months for the first year and then, as you get a sense of how the virus is settling down in your body you can do them less, but once every six months is a minimum. The cost of these tests is the real financial blow with HIV and while there has been some work being done on bringing them down or providing free tests at government hospitals, this is all still a problem.

All this is a lot for you to process so please take your time to go through them. Please consider seeing a counsellor to help you deal with personal issues, as well as a good doctor. You will be surprised, once these are in places and you are taking good care of your health and being aware of, but not obsessing, about your condition, how routine it can come to seem. Never entirely routine, of course, but manageable and certainly no reason not lead a normal life. 

What about telling others about my status?

The most important point to remember is ... you don't need to tell everyone that you are HIV positive. You need to think about who needs to know and how to tell them. Blurting it out all at once is certainly one way of telling others that you're positive. But healthy disclosure is a process that may require many discussions and contemplations.

Think of disclosing your HIV as the beginning of a new dialogue with the ones you most love and trust. Not only will they learn about you through this process, but you'll learn a lot about yourself as well. The starting point may be saying "I have something to tell you-I have HIV." But chances are that isn't going to be the final word.

Setting the stage for disclosure can make a big difference. Think about where you want to tell someone that you're HIV positive-a place where you feel comfortable and safe. If possible, arrange some place safe for you to go after the initial disclosure, like a friend's house or a support group.

Consider bringing a few pamphlets about HIV or an HIV Infoline card for the person you're telling. Not only might they use these resources later, but having them helps that person know you're not alone, that there's support for you-and for them. Consider bringing someone who already knows you're living with HIV.

Remember that their first reaction is not going to be their last. Like you, those whom you love need time to adjust to this new information. Finally, be brave and proud of the decision you've made!

Telling others you're living with HIV can be scary, painful, and difficult. In the long run, it's usually not as hard as the heavy burden of secrecy. While there's no one best way, there are a few things to think about in advance that might help.

Common reasons why some people choose not to disclose is that others may find it hard to accept your HIV status; some may even discriminate against you because of it. Discrimination within one's family or friends can really hurt. Discrimination at work can hurt, too, but it is also illegal.

The pros may be that sharing your status can feel empowering and can foster a new sense of closeness among friends, family and loved ones. Not hiding your HIV status from doctors or other health care providers can help ensure that you get the most appropriate care, too. Disclosure can also reduce the risk of HIV transmission to others, and it can lead to better, healthier sexual relationships.


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