Being diagnosed with HIV is a significant event for anyone. It is difficult to predict how you might react to the news – reactions vary widely. However, many people report feeling numb; frightened for the future; upset and angry (sometimes with themselves, sometimes with others); but sometimes also relief that a diagnosis has been made for symptoms or illnesses that they were experiencing, and they did not know why or what it was.
Being diagnosed with HIV is likely to require some important decisions to be made, and may indeed change your life…but remember, treatments for HIV today are very effective, and someone who is newly diagnosed in a timely manner, and taking modern HIV drugs as prescribed, can expect to live a long and fulfilling life, with a life expectancy very similar to that of the rest of the population.
There will be a lot of information given, and it may all be too much to take in. It is often really useful to talk things through with someone who has first-hand experince of these kinds of issues, and we would urge you to contact an organisation like NYAA. Contact details can be found here. We can help explain what you might already have been told, and help you get your thoughts together for dealing with some of the many issues that will now follow.
This section briefly explores some of those issues, but it is not complete, and everyone will have their own particular concerns and issues, so talking one-to-one with someone from NYAA can really help. Some websites have a lot of more detailed information on these issues, notably:
NAT’s My Care, My Voice
Topics on this page include the following; you can jump to them by clicking on the headings below:
- HIV Treatment and Medication
- Preventing Infection
- Telling Others
- Emotional Wellbeing and Mental Health
- Your General Health
- Pregnancy and Parenthood
- Benefits and Housing
You will need specialist medical care for your HIV. Most people in the UK are tested for HIV in a Genito-Urinary Medicine (GUM) clinic, but you will more than likely be referred from there to an HIV specialist clinic, sometimes in the same GUM department, sometimes in another hospital department.
Current guidelines (BHIVA 2015) in the UK say that everyone who receives an HIV diagnosis should start antiretroviral treatment (ART) as soon as they are able, no matter what their CD4 count is. CD4 count is a mesure of how well your immune system is doing – the “normal” range is typically between 500 and 1200. You can find more information about CD4 in the “Starting HIV Treatment” section. Older HIV treatment guidelines suggested waiting until the CD4 count had fallen to 350 before starting treatment – this is no longer the case.
Starting HIV treatment may seem like a big step, and the decision of when to start and what to start with will vary from person to person, depending on their own particular circumstances. You will have a role to play in this – ultimately, it should be your decision, though of course, the clinicians will give you information and advice. It may all seem complex and difficult, but the basic information you need can be explained clearly and simply…if it is not, or you are just not sure about it all, then it might be useful to talk things through. Although NYAA does not offer treatment advice, what it can do is explain and clarify the things that you might have been told. You can find our contact details here. And if you are still concerned about the medical detail, there are organisations such as HIV i-Base that specialise in HIV treatment, and can provide detailed, impartial, and personalised, information.
At present, HIV treatment needs to be taken as prescribed for the rest of your life – there is no cure for HIV. But many treatment regimens today are simple and easy to take – often one or two pills, once or twice a day. Most modern regimens have very few and very mild side effects, which usually go away after a few weks. Nonetheless, it is vitally important that whatever regimen you decide on, you then stick to it and take the medication every time, on time and as prescribed. This is called adherence. Good adherence is the key to long-term HIV treatment. The HIV drugs will reduce the level of HIV in your blood (as measured by the viral load test) to a level that is very low – undetectable, or non-detectable (n/d). As long as the viral load remains this low – undetectable – then the treatment will work. However, if for some reason the viral load increases (often due to poor adherence – not taking the medication every time, on time), then the virus can mutate to become resistant to the medication – that is, the medication then stops working. For this reason, once you start treatment, the viral load will be monitored every 3 months or so, to make sure that the medication is still working. If for whatever reason the viral load does rise in a sustained way, then resistance may have developed, and a change of HIV drug regimen may be needed. Changing HIV drugs is not necessarily difficult, but must always be done with clinical advice and in a controlled way.
It is also important to understand that other drugs can interfere with the HIV drugs – this is called drug-drug interaction. For this reason, you need to tell your HIV clinician honestly and openly about every drug – prescribed, over-the-counter, herbal, recreational, whatever – that you are taking, to check whether or not there might be interactions. And if during the course of your HIV treatment, you are prescribed something by your GP or whatever, you need to check with the HIV clinician about possible interactions.
Many people may have heard or read about the terrible side-effects that were seen with the first HIV drugs. Fortunately, this is not the case today. Most people experience very mild (if any) side-effects, and typically, only for the first few weeks after starting. If, however, you are one of the unlucky few who does suffer from unpleasant and sustained side-effects, then your clinician can help. Therer are ways to manage side effects. And there are usually several tretment options, so it may be possible to change your current HIV treatment for another, with (hopefully!) fewer side-effects.
These topics are discussed in more detail in the section on HIV Treatment.
When the immune system is compromised, whether by HIV or anything else, then the body is susceptible to infections and malignancies called opportunistic infections or OIs. If someone with HIV hasn’t been diagnosed, and has had HIV for long enough for the immune system to be significantly damaged, then often they will fall ill with one or more of these OIs, and it is this that may lead to an HIV test and diagnosis. Fortunately, once HIV treatment is started, then the immune system will recover, and so the risk of OIs becomes much less.
The important thing, then, is to keep your immune system as strong as possible – and the best way of doing that is to adhere to the HIV treatment recommended by your clinicians. As long as your immune system is reasonably strong, as measured by a CD4 count of more than 200, then you need not take any more precautions than the rest of the population with regard to preventing infection. However, if your immune system is weak, with a CD4 count lower than 200, then your clinician will recommend a number of precautions, and may also prescribe some drugs to prevent specific infections.
A number of infections can cause health problems for people with HIV. The major ones are hepatitis B (HBV) or hepatitis C (HCV); and tuberculosis (TB). Often, people may be diagnosed with both HIV and one of these infections – this is known as co-infection. Having HIV can make the other infection more serious, and specialist treatment for co-infection will be needed.
One of the first important decisions you will have to make is around telling others – who to tell, how to tell them, and when to tell them. Telling people can provide tremendous support – but it can also cause problems. There is still a lot of ignorance and stigma attached to HIV. Many people are still afraid of catching HIV through normal social contact, even though this is NOT possible. And some cultures and backgrounds may also be hostile to HIV, and regard it as being associated with people who are morally degenerate – sex workers, drug users, promiscuous people, and so forth – whereas we know that HIV does not discriminate, and people from ALL walks of life can be and are infected.
Who to tell and how to tell them will require careful consideration. It is important to think this through carefully, and not tell everyone as soon as you are diagnosed. You need to consider carefully whether or not they really need to know. It can be really helpful to talk the whole issue of disclosure through with someone who has experience in this area – and we at NYAA would recommend strongly that you talk things though with someone from NYAA first before telling people about your status. You can find our contact details here.
Things to consider include:
- why do I need/want to tell this person?
- are there any benefits/drawbacks to telling them?
- are they able to cope with emotional issues?
- how will they most likely react?
- what would I do if they react in this way? Or if they react differently?
- will they tell other people?
Of course, if you are in a relationship, then your diagnosis will have a big impact on your partner. No two relationships are identical, so there is no simple advice to give – generally, telling a partner sooner rather than later would probably be a good thing – and in the meantime, practice safer sex to prevent transmission (though this might raise questions in itself…). If it is clear from the diagnosis that you may have had HIV for some time, then you may also need to consider telling former partners. Your partner may need to have an HIV test. It may be that they will react badly to this news – this can then have a significant impact on your relationship, and domestic circumstances. You need to think these issues through, and if you need support, talk to your clinic or local support group like NYAA. You can find our contact details here.
Decide carefully what friends you want to tell. Some can give tremendous support; others may be worried for you in an unhelpful way, and others may decide that they no longer want to see you. Remember, too, that some people find it hard to keep things to themselves, even if you ask them to treat this matter in confidence. Also, they may not know much about HIV, so be prepared to reassure them and tell them about the things you have learned about HIV.
Telling your family can be difficult. If you are a man with HIV, then it may be that people will assume that you are gay, whether you are or not, as HIV in the UK is predominantly associated with gay men. This is not the case in other parts of the world, such as Africa, where HIV is predominantly a hererosexual issue. Some cultures and religions may take a harsh view of HIV, and be unsympathetic, or shun you. In many cases, though, family and friends can be very loving and supportive. The key thing is to think carefully about who you tell first. If you are a parent, you may be thinking about telling your children. This can be very stressful for them and you. It is a good idea to get some support before you disclose to your children, family and friends – you can get support from a family support worker, or an HIV organisation like NYAA. You can find our contact details here.
It is worth noting that NYAA provides support not only for people living with HIV – you – but also, for people affected by HIV. That is, once you have thought through the disclosure issures, and then have told someone, then they too are welcome to come to NYAA for information, advice and support: like you, they may have many questions or issues that they want to think about from their prespective.
As well as partner, family and friends, there are other people who might need to know about your HIV status. Generally, it would be a good thing to tell your GP that you are HIV positive, because when treating you or prescribing medicines, they will need to know about other health issues and medicines you take. Doctors cannot discuss your health with your family, but they may need to disclose your HIV status with others in the healthcare team.
When applying for life insurance or a mortgage requiring it, insurers will ask you and your GP about your HIV status. If you lie and the insurance company finds out, it will cancel the policy. There are, though, companies who can help arrange life insurance, mortgages and travel insurance for people with HIV. It may be that NYAA has experience in this area; if not, see the THT website for more information.
You will need to consider carefully whether or not your employer needs to know about your status. If your employer is supportive, then this could be a real help in making it easier to take time off for routine appointments (typically every 3 months), or dealing with any periods of sickness. On the other hand, it may be that you are concerned that your employer may not react supportively, or may make the information public, and this might lead to stigma, discrimination or bullying at work. Although there is legislation against HIV discrimination at work, often this is a last resort and a demanding process emotionally. There are only a few occupations where you are obliged to inform your employer – for example, healthcare. More information can be found by discussing this with NYAA, or from the THT website.
Getting a positive diagnosis for HIV can make you feel differently about yourself, and put you off sex at all, at least for a while. You may feel bad about your past sexual practices, or be worried about infecting someone else. It is important to remember that HIV is an infection, without moral judgement, and should not be regarded as a “punishment” in any way.
If you’re taking HIV medication and have an undetectable viral load, you cannot pass on HIV through sexual activity. This is often referred to as U=U …undetectable equals untransmittable
You will need to think carefully about telling people about your HIV status, and about the kind of sex that you have with them. Many people are happy to have safer sex – condom use remains the best way to minimise the risk of transmission – but others find this difficult or impossible.
Remember, though…HIV treatment is also a form of protection.
Note that this protects against HIV transmission only. Unprotected sex (without a condom) can lead to pregnancy and sexually transmitted infections (STIs) other than HIV. STIs are often more severe or more rapid-acting for people living with HIV.
Some people living with HIV choose to have sex only with people who are also living with HIV – this is sometimes referred to as sero-sorting.
Sexual dysfunction – loss of libido (sexual desire) and/or (for men), impotence (problems in getting and sustaining an erection) – can happen to anyone, particularly as they get older. However, this does seem to be more common in people living with HIV. Such sexual problems are often brought on by stress. Excessive use of alcohol or recreational drugs can also have a significant effect. And many of the drugs used to treat depression can lead to sexual dysfunction. Advanced HIV infection, and some of the older HIV drugs are also thought to cause problems in this area.
There is no shame in any of this! If you are having problems, then your HIV clinician can refer you to a specialist sexual health doctor or nurse. They can then work with you to get to the root cause of any problems, and then try to deal with them in an appropriate way. In most cases, a satisfactory solution can be found.
Infecting someone with HIV after unprotected sex could have serious legal implications. This is discussed more fully in the section HIV Prevention.
Condom use remains an effective way of preventing onward transmission of HIV and also other STIs.
Learning about your HIV status can involve tremendous emotional stress. This may well, though, change with time, as you learn more about HIV, and come to terms with living with HIV. But illness, starting or changing treatment, side-effects, disclosure, and many other things can of course again cause emotional distress. Most people, no matter how well-adjusted they may be, will find that their emotional wellbeing is affected by HIV at some point and for some period of time.
There is a lot that can be done, though, to help with your emotional wellbeing. Just talking things through with a friend, someone at the HIV clinic, or someone from from your local support group like NYAA can be a big help. Suitable counselling can also be a help. You can find our contact details here.
An important underlying principle is to look after the basics – getting the right amount of food and sleep. If you are having trouble with eating – either too much or too little – or with sleeping, then it is a good idea to ask for help.
Turning to alcohol or recreational drugs may appear to give some relief when dealing with difficult emotional issues, but in the longer term, they are likely to make things worse, not better.
Mental health problems can affect anybody, but it does seem that people living with HIV are more likely to experience problems in this area. Depression and anxiety are more common in people living with HIV, but these and other issues around mental health can be addressed successfully.
The same basic principles for good general health apply for people living with HIV – only more so. As people live longer and longer with HIV, thanks to the advances in HIV treatment, it is becoming clear that HIV may have a negative impact on other parts of the body. There are concerns that cardiovascular disease, kidney and liver function, cognitive function, and bone mineral density might all be adversely affected by HIV over a long time period. However, the advice to minimise the impact for nearly all of these issues is more or less the same, and more or less what we already know:
- stop (or reduce significantly) smoking
- do not get overweight -if overweight, reduce weight
- eat healthily – less fat, more green vegetables and fruit
- have regular load-bearing exercise
- drink alcohol only in moderation, and no binge-drinking
- stop (or minimise) the use of recreational drugs
No surprises! All of these are important for the general population, but are more important still for people living with HIV.
In the UK, we are lucky that we don’t have too many serious diseases for which vaccinations are required. The NHS runs a systematic vaccination programme for babies and children in the UK, to offer protection against such things as diphtheria, tetanus, whooping cough, polio, meningitis, measles, mumps, rubella, and pneumococcal infections. Later, for girls at around age 12, a vaccine for the HPV virus is given to offer protection against cervical cancer.
If you have received these as a child, then for most of them, you will not need any further vaccinations. Some, though, may require boosters – polio and tetanus, for example. And for people living with HIV, some extra vaccinations may be needed – for example, it is recommended that you have a flu shot every year, and a vaccination for pneumococcal disease every 10 years or so. Your clinician will probably suggest a course of vaccinations for hepatitis A and hepatitis B (HBV) as well.
If you are thinking of travelling abroad, it is a good idea to get advice well in advance – typically 8 weeks or so – in case there are vaccinations that you should have. Generally, people living with HIV should not be given “live” vaccines if their CD4 count is low – less than 200. Some live vaccines can be given to people with higher CD4 counts, such as Yellow Fever. However, some live vaccines should never be given including Cholera, Polio, Typhoid, except in exceptional circumstances.
If you are diagnosed as HIV positive during pregnancy, then there are some issues to consider. An HIV-positive woman can pass on HIV to her baby during pregnancy, or during delivery, or by breastfeeding. HIV treatment can, however, greatly reduce the risks of a woman passing on HIV to her baby. Appropriately managing labour can reduce the risks even further. The exclusive use of formula feed is strongly recommended for all babies with HIV-positive mothers in the UK. Using these methods, it is possible to reduce the risk of mother-to-child transmission (MTCT) of HIV from about one in four to less than one in a hundred.
Many people living with HIV will have a strong desire to have children. Living with HIV does not mean that you can’t think about having a family. With the right care, women can give birth to children without passing on HIV.
If you’re thinking about having a baby but you aren’t pregnant yet, it is worth speaking to your doctor first. He can give advice on how to get pregnant without putting your partner at risk of infection. Clearly, in order to become pregnant, you may need to consider unprotected sex. If both you and your partner are living with HIV, then you may already be having unprotected sex, so pregnancy can occur if no other form of contraception is being used. If one partner is HIV positive, but the other is HIV negative, then unprotected sex can run the risk of HIV transmission. Techniques exist to get pregnant without having unprotected sex – self-insemination, and sperm washing. The recent data showing that the risk of HIV transmission is greatly reduced when on HIV treatment and with a sustained non-detectable viral load mean that some couples may now prefer to take the risk – much reduced – of HIV infection and have unprotected sex rather than use the more cumbersome techniques just mentioned.
This is a complicated area. There is a lot of information on the web, and THT’s myHIV is very helpful for a general overview. However, each case is different, and so we would very much urge you to contact NYAA and discuss your personal issues in this area with one of our team. The team has a lot of background in these areas, and can often provide guidance and help straight away – or else, commit to working with you to find an appropriate resolution to your own particular needs. You can find our contact details here.
When the AIDS epidemic in the UK was first recognised, in the 1980s and early 1990s, people living with HIV were usually put onto a range of benefits immediately, on the basis of their HIV status. In those days, there either was no effective treatment for HIV, or the treatment was complex with many side-effects, and so living with HIV was usually difficult and incapacitating. Today, however, thanks to the improved methods of diagnosis and treatment, for most people, living with HIV is no longer debilitating and incapacitating. As such, being diagnosed with HIV does not automatically confer any special benefits or housing privileges; rather, each case is looked at (as for any other chronic condition) on the basis of what the individual actually needs. This is done by assessments, which can be in the form of written forms which are difficult to fill out, or interviews, which can be stressful. Again, we at NYAA have experience of both, and can support you if necessary through this process. You can find our contact details here.
Today, treatment for HIV is so successful that most people living with HIV can either continue to work (if they are already in employment), or seek employment, or return to work if they have been off work for a period owing to an HIV-related illness. Nonetheless, there are still issues to address…such as deciding whether or not to disclose your HIV status to your employer. There may be other possible problems, too…you may face discrimination, or need to take time off for routine HIV clinics, or due to illness.
Again, this is a complex area, and every individual’s needs will be different, so talking to NYAA may be helpful. You can find our contact details here. General advice can be found on THT’s myHIV, NAMLife, and NAT.