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What's Next?
Beyond the Test

By Sue Saltmarsh

September/October 2009

Sue Saltmarsh Okay, so after days, weeks, or months of worrying that you might have been infected with HIV, you've taken your 3-month test and are sitting in a room with a counselor who looks at you with basset-hound eyes and tells you the bad news. Besides going into deer-caught-in-the-headlights shock, what do you do next?

First, cry, yell, curl up into a ball -- whatever you do, be in your Truth with it. Denial won't do you any good and you might as well begin this journey accepting, even embracing, the intensity of the emotions you're feeling.

Next, decide whether you're going to tell your family, friends, sexual partner(s), boss, etc. Of course, it's up to you to decide who to share this information with, but one thing to think about is that the only way stigma and discrimination can survive is by being perpetuated by the shame and secrecy of those it targets. It may seem inconceivably hard, but if you don't act ashamed, it will be harder for others to make you feel that way.

If you decide to go this alone, start searching for an ASO (AIDS service organization) that provides education, support groups, and case management services. The good news, if you can believe there is any, is that you're now part of a very insular community -- if your family rejects you, your boyfriend abandons you, and your friends start avoiding you, there is literally an entire world out here of HIV-positive people who are willing to become your helpers, your teachers, your friends, your lovers, and your family. Most will know what you're going through because they've been there themselves. Don't deny yourself this invaluable resource.

Then there's the issue of money. If you aren't independently wealthy, don't have insurance, and don't want to ask your family for help, Medicaid might be your only viable option. The prospect of sitting in some office all day signing up for it may be daunting, but not as daunting as the cost of medications, doctor visits, lab work, etc. You can also check into signing up for your state ADAP (AIDS Drug Assistance Program) -- each state has their own rules, so more bureaucracy will have to be endured!

Then you must find a doctor, if you don't have one you trust already. It's best to find a doctor who's an HIV specialist or at least experienced in treating HIV-positive patients. The most important thing to realize is that you and your primary care doctor are the foundation of the team that will keep you alive and well, so you have to be able to ask questions, discuss treatment options, report any changes you notice -- if you can't do that, find another doctor!

There are some practical, everyday things you should do too -- eliminating stress is one of the best ways to keep your T-cells up and your viral load down, so do whatever you have to in order to make that happen. Go to the gym, take yoga classes, read good books, pray, take bubble baths, whatever is right for you, to create a safe, dedicated time and place that you know you can rely on. Giving yourself this kind of consideration and care can make a huge difference.

The good news, if you can believe there is any, is that you're now part of a very insular community.
Also, diet and sleep are very important. Get a good eight hours of sleep every night or take naps during the day. Fatigue is one of the most common side effects of almost every medication, as well as HIV itself. If you understand that your energy levels are going to be different than they were before, you'll be less likely to push yourself beyond your new limits or to have unrealistic expectations that turn into frustrations. See the article on page 24 for some dietary guidelines.

Fortunately for you, there has been great progress made in terms of the meds HIV-positive people take. It used to be up to 21 pills per day, taken within rigid timelines, with or without food. Now there's Atripla, a one-pill-daily combination, a commonly prescribed medicine for first-time treatment and it's usually well tolerated.

In any case, when you and your doctor decide it's time to start taking meds, know that you'll have to commit to taking pills for the rest of your life. There is no cure for HIV/AIDS. Just as there are people all around you who control their diabetes, their cancer, and their heart disease with the right medications, you can be someone who keeps their HIV under control.

So what are you afraid of? Change? HIV-positive or not, you cannot live your life fully without it. And one of the most wonderful things I've learned from having my life full of people living with HIV/AIDS is not to waste time on the bullshit stuff, but to focus on what really matters. Just because you did turn out to be positive, your life isn't over, it's just different! And many of the differences can be growthful and beneficial for you if you let them. So when the last tear has been shed and you've uncurled and gotten out of bed, look this new life in the eye and, with the courage and curiosity of all great explorers, demand to know "What's next?"

Breathe deep and live long.

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