Newly Diagnosed: First Reactions

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People react in many different ways when they hear that they have HIV. You might carry on as if nothing has happened, you may look for lots of information, or you might find it difficult to accept the news.

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You may blame yourself. But people don’t get HIV because they ‘deserve it’ – having HIV does not mean you are a bad, immoral or stupid person.

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Most people get HIV from a sexual partner. You might not have known about HIV at the time, or not thought you were at risk, or you might have decided not to worry about it. All these are very normal, human things to do.

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You may blame someone else. If you think you know who passed HIV on to you, you may understandably feel angry with them.

But they may not realize that they have HIV. Very often, HIV is passed on by people who have only had it for a few months themselves. They haven’t been tested and don’t know they have the virus.

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Or they may have known and not told you. Perhaps things would be better if they had told you. But many people are afraid of telling others, because they feel ashamed, are worried about being rejected, or fear that people they tell won’t keep the information to themselves. It’s not always easy to talk about having HIV. 

 

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Health Issues 

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If you have been diagnosed with HIV this means that you have a virus in your body. It doesn’t mean that that you have AIDS, or that you are dying.

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HIV treatment can keep the virus under control. With HIV treatment, you can have:

• Healthy life. The drugs stop the virus from reproducing and reduce the amount of HIV inside your body. This allows your immune system to stay strong and fight off illnesses and infections.

 

• Long life. Thanks to HIV treatment, most people living with HIV have a normal life expectancy, living as long as people who don’t have HIV.

 

• Sexual life. Effective HIV treatment prevents the sexual transmission of HIV. If you take anti-HIV drugs and have an ‘undetectable viral load’, you won’t pass HIV on to your sexual partners.

 

• Active life. HIV shouldn’t stop you from working, forming relationships, having children or making plans for the future.

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HIV treatment is recommended for all people living with HIV. The sooner you start to take it, the sooner you can benefit from it.

Other names for HIV treatment are antiretroviral therapy, ART, anti-HIV drugs and combination therapy. They all refer to the same type of medications.

 

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Taking Treatment

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To understand why HIV treatment is needed, it may help to know a little about how HIV affects the body when you aren’t taking treatment.

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You may have briefly had something a bit like a flu during the first few weeks after infection - this is known as a ‘seroconversion illness’. After that, most people don’t have any obvious symptoms for several years.

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But if you aren’t taking HIV treatment, HIV will continuously attack and weaken your immune system. We all need a strong immune system as it defends the body from infections.

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HIV weakens the immune system quite slowly, so you wouldn’t necessarily feel unwell. But after a while, you will be more likely to develop infections and illnesses that a healthy immune system would have easily been able to fight off.

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If you were diagnosed with HIV ‘late’ this means that you had HIV for several years before you were tested and found out. You would have had HIV without taking treatment and it may have made you ill sometimes. Nonetheless, you can start to take treatment now and it will still be effective.

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If somebody goes a very long time without treatment, the most serious stage of infection can occur. This is known as AIDS. It refers to a range of serious illnesses that people may get when HIV has significantly weakened their immune system.

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Thanks to HIV treatment, these illnesses are less common and very few people in the UK develop AIDS. Cases of AIDS most often occur in people who are diagnosed at a very late stage. Most importantly, AIDS can be treated and most people recover from it.

HIV is not the same as AIDS. The initials in HIV stand for Human Immunodeficiency Virus. AIDS stands for Acquired Immune Deficiency Syndrome.

 

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Undetectable viral load

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To see how well treatment is working, you’ll be asked to have blood tests every few months. The most important of these is called a viral load test.

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Viral load is a measure of the amount of HIV in a sample of blood. The less HIV there is, the better. 

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The aim of treatment is to have an ‘undetectable’ viral load. This means that treatment is working very well and there is only a little HIV in your body. In fact, there was so little HIV in the blood sample that the test either couldn’t find any or found only a tiny amount. 

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If you are taking treatment and have an undetectable viral load, you are unlikely to have an HIV-related illness. You can also be confident that you won’t pass HIV on to your sexual partners.

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But it doesn’t mean that you are cured of HIV. The drugs can’t totally wipe out HIV from your body. If you stop taking the treatment, your viral load will go up again.

 

 

Taking HIV treatment

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HIV treatment usually involves taking one or two tablets, once or twice a day.

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HIV treatment works well when it is taken exactly as prescribed. This is often called ‘adherence’, and it means:

• taking your pills at the right times

• taking the right dose

• following any advice about food and drink (such as taking the pills with food)

• checking for interactions with other medicines or drugs you are taking.

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At Life 2.0. you can receive support and help from your peers on developing a good adherence. We can give you advice on developing a routine that helps you remember to take the drugs every day. 

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If you are taking some other drugs, tell your doctor about all the other medicines you take, they can check for drug-drug interactions. 

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If you often forget to take your pills, or don’t take them for several days or weeks, then the drugs you are taking may stop working. If this happens you would need to change your treatment.

 

Side-effects

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Today’s anti-HIV drugs have far fewer side-effects than the drugs used in the past.

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Most side-effects are caused by the body getting used to a new drug. They usually go away after a few days or weeks. Some people feel sick, have diarrhoea or are more tired than usual.

Severe, long-term side-effects are much less common. If a drug does cause you problems, your doctor can usually change your treatment to a different drug.

 

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Looking after your health

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People living with HIV need no any specific care. Though as for anyone else, taking care of your health involves more than taking pills and significantly improves your health outcomes.

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It will also help if you can:

• Eat a balanced diet to maintain a healthy weight, give you energy and get the nutrients your body needs.

• Get some exercise, which is good for the heart, lungs, circulation and mobility.

• Get rest and sleep so that you can wind down and strengthen your immune system.

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With today’s HIV treatment and medical care, many people living with HIV will never fall ill as a direct result of HIV. It’s more often another health issue, like heart disease or diabetes, that causes problems. Especially as people living with HIV get older, their health concerns are not so different from those of other people. 

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An active and healthy lifestyle will improve your health now and lower your risk of developing another health condition in addition to HIV.

 

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Mental health

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It is also important to take care of your emotional wellbeing and mental health. 

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As well as being good for your physical health, balanced nutrition, exercising, good sleep and strengthened immune system are good for your feelings and mental health. For example, exercise can make you feel more relaxed and energised. A balanced diet will give your brain the nutrients it needs to function well.

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It’s also good to stay socially connected and to keep yourself occupied with activities you enjoy. Try to talk with others about your worries and concerns, rather than keeping things bottled up. 

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If you hesitate to talk about your issues with your friends of relatives, you can always talk to us at Life 2.0. We’ve been through the same challenges and are happy to share our experience and support you.  

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We provide safe space where you can meet people who are in a similar situation to you.