In the Beginning: What to Do First
An excerpt from Health Initiatives for Youth's Thrive Guide, this article gives you some first steps to take after you've been diagnosed. The Thrive Guide is reprinted here with the initiative's permission. |
What does testing positive for HIV really mean? What should I do first? Where do I go from here?
A positive HIV test changes your life. For some people, an HIV-positive test result is shocking. For others, it confirms what they already knew or suspected. If you feel fine, it may be difficult to believe you have HIV at all. It is very important, even if you feel scared, to talk with someone you trust and to find a health clinic or doctor's office where you can see a person who has experience treating people with HIV.
Straight up—HIV is a serious, life-threatening infection. But HIV is not necessarily a death sentence. Many people are alive 15 or more years after becoming HIV positive. Whether you took an HIV test or not, sooner or later you would learn that you have HIV. If you hadn't tested, HIV would have shown up in the form of an infection or other damage to your immune system. So think of it as a heads up. Now that you know, you can take actions to improve, extend, or save your life. You can learn about your options and make important medical and life choices.
What does a positive HIV test mean?
The most common test for HIV is called an HIV-antibody test. HIV tests used to always involve having your blood taken, but now there are also oral and urine HIV tests that are accurate as well. What exactly is an antibody? It is a small protein that your immune system will make when it is defending your body against bacteria or a virus. Your body's immune system only makes antibodies what it has seen, and the antibodies that your body makes are specific to each bacterium or virus. In an HIV-antibody test, a doctor or lab technician looks to see if your body has made antibodies to HIV. If you have HIV antibodies that means that your immune system is responding to being infected with HIV and the HIV antibody test will be positive. An HIV-positive antibody test does not mean that you have AIDS or that you are going to die from AIDS. Remember, though, that an HIV-antibody test looks for your body's immune system response to the virus not for the virus itself.
The Immune System and HIV
Your body can be thought of as a collection of cells organized to work together to keep you alive. These cells are organized into tissues; in turn the tissues are organized into organs and organs into systems. The body's systems work together to keep us supplied with energy and to rid our body of waste. Damage to cells in the body can have an enormous impact on how the body systems function and on how well you feel. If enough cells are destroyed or stop functioning as they are supposed to, you can become sick and even die because the cells make up the foundation of the body systems.
HIV is a specific kind of virus. The letters in HIV stand for human immunodeficiency virus.
Viruses, and there are many kinds, are extremely small organisms that invade and attack living cells. Viruses often infect and destroy specific kinds of cells. One of the cells that HIV infects and destroys is an important cell of the immune system. It is called a CD4+ cell or T-Helper cell (many people just call it a T-cell). The CD4+ cell's job is to direct how the immune system responds to all of the different invaders, including bacteria, viruses, fungi, etc. If the immune system doesn't respond as it should, the body cannot fight off the invaders that cause illnesses or infections.
You can think of the immune system as a kind of security system made up of many different types of cells. The purpose of the immune system is to protect us from intruders. These "bugs" may be called microorganisms (micro means small) or pathogens and these include things such as bacteria, viruses, fungi, etc. When the immune system detects that an intruder has gotten inside the body, it responds by mounting what is called an immune response to rid the body of the intruder or at least bring it under control. Different immune system cells do different things. Some immune system cells attack the invader and destroy it. Others produce defense proteins, called antibodies, that coat the intruder and mark it for destruction and/or neutralize it. Once the intruder is brought under control or eliminated, another immune cell tells the immune system to slow down and rest.
Find a Doctor or Health Care Provider
If you feel fine, it may be difficult to believe that you have been infected with HIV at all. If you feel sick, tired, or are dealing with HIV-related conditions or opportunistic infections, then the need to get hooked up with some good health care may feel very real to you. You might feel alone or isolated. Even if you don't want to tell anyone else about your HIV, you need to see a doctor or other health care provider to figure out what you can do to stay healthy. Finding a health care provider is very, very important, especially one that you can trust and be open with. It's okay once you have seen one doctor to decide to see another one instead. Don't feel pressured to continue to see a doctor who intimidates you or doesn't listen to you. Not that you shouldn't trust and respect his/her knowledge, but make sure you are being listened to, on a real level.
- What if I'm under 18?
- What if I don't have health insurance?
- What if I don't want my parents, family, or friends to know I am HIV positive?
Just because you are under 18, do not have health insurance or don't want your family or friends to know you are HIV-positive doesn't mean that you cannot see a health care provider. If you are seeing a doctor or nurse for HIV-related care, they do not need your parents' signature, nor are your parents even required to know, because HIV care is considered sensitive services. Be sure to tell your doctor that you don't want anyone to know, if that's how you feel.
Going to a health clinic and monitoring your health does not mean that you have to take medication. BUT not going to see a health care provider and NOT monitoring your health means that you will not have the information you need to make important decisions that could save and extend your life.
Explore your Options
Learning about your body and how it works is important for everyone. Understanding what is happening to you and what the tests mean is vital to being able to make your own informed decisions about your health care and how you take care of yourself.
It's important to talk with others when you're ready! This cannot be over stressed. You have important life decisions in front of you. You might not want to share your status right now, but there are toll-free numbers you can call to speak with someone about what's going on with you, people who are trained to handle this stuff. There are professionals who can give you information about services located in your area. Unfortunately, it may be more difficult to find services if you live in a small town or rural area than if you live in a city. When you contact an agency or health clinic, ask them if their services and programs are anonymous and free.
What You Can Do Now to Stay Healthy
Nutrition
Ways to avoid water and food-born illness
- Keep all perishable food cold. Your refrigerator should not be above 40 degrees.
- Keep hot foods very hot, until you are ready to eat or store them.
- Be aware of expiration dates of food items from the grocery store and at home with your left-overs (you may want to label them with a piece of masking tape or a marker.)
- Do not eat food from a can that is rusted or dented.
- Thaw food in the refrigerator.
- Do not eat eggs that are not cooked through, raw or undercooked meat or fish, or anything with mold on it, including aged cheeses.
- Always clean and disinfect all areas of your kitchen, cutting boards, counter, and your utensils before and after preparing food.
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On the whole, our eating habits, as young people, are not particularly thought-out. They are habits, however, and that means they can shift and change (slowly if we want them to). We are bringing all this up because, as we have stressed several times before, you may want to start taking better care of yourself. Your diet and the choices you make about what you put in your body, how often you do it, and how it will help or hinder your health otherwise, is very important right now. Regardless of how long you have had HIV, this section should help you figure out some steps to take to eat more of the kinds of food your body needs and less of what it doesn't. Just remember, changes in your eating habits will not happen overnight. You and your body need time to adjust. Start a little bit at a time, and don't feel like you have to make extreme changes immediately.
(A lot of the following information is influenced by Positive Cooking: Cooking for People Living with HIV by Lisa McMillan, Jill Jarvie, and Janet Brauer—a book we highly recommend. Click here to purchase this book.)
Now that you are HIV-positive, you may hear that your metabolism has increased. Metabolism is the rate at which your body processes calories, the units of energy we get from food. This may be true. Your body may be processing food a little faster if it has more work to do to maintain a working immune system. How well your body absorbs nutrients, and how these nutrients are used is all linked to what you eat (the vitamins you absorb now will affect how your body can process other vitamins and nutrients later). Food is the fuel you need to keep your body and brain working. It is easy to look at what you should be eating as a pyramid. If you place whole grains and lean proteins, at the widest point of the pyramid, then fruits and vegetables will take up the next largest section, while oils, fats, and sugars will sit on top, filling the least amount of space. This would be a useful way to look at the amount of each kind of food you eat, even if you were not HIV-positive. When you are positive, however, it is even more important.
Lean protein is especially important. Meat eaters and vegetarians should both be careful to get protein.
Vitamins are also very important now. And, while you should definitely talk to your doctor about what is safe to take, keep in mind that most vitamins and minerals have recommended doses on the bottle for a reason. If one is good, two is not better.
With fluids, on the other hand, its difficult to get too much. Of course it's possible to drink too much water, but many of us do not drink enough. Water makes up 55 to 60% of your body's weight and it has so many important functions, you should be drinking it like it's, well, water. Eight to ten glasses per day is the least you need right now.
Your body is also in danger of coming into contact with bacteria that may be present in food and water that could cause illness. This is why, whether you cook at home or eat out you should be thinking about putting the freshest, cleanest food and water into your body. In the box above are some basic ways you can make this happen while eating at home.
Exercise
A comfortable amount of exercise is also key to staying healthy. Again, this is something you can work your way into. If you are not used to exercising regularly, it may not be realistic to plan to go to the gym five days a week. Relax. There is a lot of pressure out there to make your body look a certain way. It can be useful to build muscle, but don't get obsessive. Start out with a brisk walk or jog a few times a week, or a game of tennis or basketball. If you experience fatigue and do not feel up to aerobic exercise (the kind that gets your heart pumping and increases the flow of oxygen through your body) anaerobic exercise can also be very useful. This includes things like weight lifting, and push-ups as well as swimming and yoga (which is very good for you if you have problems with your joints). Don't over-exert yourself, and remember to drink more fluids than usual to replace the ones you may lose when you sweat!
Stress and Sleep
Recently, evidence has appeared to support what a lot of people have suspected for a long time—that stress can be a major barrier to good health. As an HIV-positive young person, you may be experiencing a great deal of anxiety, worry, and stress. Not only can this be bad for you because it keeps you from eating right and getting a regular amount of sleep, but it is thought to directly affect your T-cell count.
Reducing stress is much easier said than done, however, and it may take more than you think to effectively stay calm. Start with identifying the things in your life that cause stress. A relationship? Your current outlook on life? An aspect of your living situation? Clearly not all of these things are necessarily within your control, but it may be useful to look at those things that are. Set some small goals for yourself: To take more slow walks; to set aside an hour each night to do something calm, like reading for pleasure, listening to calm music, drawing, or writing in a journal. Even things like cleaning and cooking can relieve stress if you go into it thinking about it that way. Similarly, a regular amount of deep sleep can help your body function healthily. Contrary to what you may think, sleep is not something you can save up to use later. This means that instead of varying your sleep patterns, getting six and a half hours one night and nine the next, aim for the same amount every night.
So, as you can see, there is a lot you can do now, to keep yourself feeling healthy.
Updated March 2008
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