HIV stands for human immunodeficiency virus. It’s a virus that damages your immune system and makes it harder for you to fight off infection and disease. AIDS stands for acquired immune deficiency syndrome. This term is used to describe a variety of dangerous (and potentially life threatening) illnesses that happen when your immune system has been weakened by HIV.
Currently there is no cure for HIV, however drug treatments now mean most people with the virus are able to live long, healthy lives. An early diagnosis and effective treatment allows most people with HIV to avoid any AIDS-related illnesses.
On this page we’ll gain a clearer understanding of HIV and AIDS and especially the psychological impact it can have. We’ll debunk some common myths and look at what support is available.
Understanding HIV and AIDS
HIV has been around for many decades, however it was only discovered in the 80s. Back then the disease wasn’t fully understood and the diagnosis came with a great deal of stigma. Today, we know much more.
Then, AIDS was a common outcome of a HIV positive diagnosis - today, thanks to advances in our understanding and drug treatments, it is less common.
The difference between HIV and AIDS
Some people use both terms to describe the same thing, but they are different.
- HIV is a life-long virus. Most people who receive a positive diagnosis for HIV do not have AIDS.
- AIDS is a set of serious illnesses people with the HIV virus eventually get if they don’t receive treatment. The HIV virus can be transmitted to other people, AIDS cannot.
Diagnosis and treatment these days is so effective that most people with HIV will not develop AIDS. The key to this is early diagnosis and receiving treatment.
For most people (around 80%), after two to six weeks of contracting the HIV virus they’ll experience a short flu-like illness. Once this illness has passed, HIV may not cause any further symptoms for several years.
The symptoms of this short illness can include:
- high temperature
- body rash
- sore throat
- joint pain
- swollen glands
Now, of course these symptoms can present for a number of reasons and so, illnesses do not necessarily mean you have contracted the virus. If you experience these symptoms and think you may have been at risk of contracting it however, it is worth getting tested.
Further symptoms will differ from person to person. Some may go another 10 years both feeling and appearing well. If the virus isn’t detected and treated, the immune system will get increasingly damaged and can lead to the following symptoms:
- skin problems
- weight loss
- recurrent infections
- chronic diarrhoea
- night sweats
- other life-threatening illnesses
Early diagnosis and treatment can prevent these symptoms.
How is HIV transmitted?
The most common way HIV is transmitted in the UK is through having sex with someone who has HIV without a condom. Those with HIV can pass the virus on when they aren’t experiencing symptoms and pass it on more easily in the first few weeks following infection.
Receiving HIV treatment significantly reduces the risk of passing on the virus.
Aside from sexual contact, other ways of transmitting HIV include:
- sharing needles and syringes
- sharing sex toys
- from mother to baby before birth, during birth or after birth (through breastfeeding)
- through blood transfusion (this is now very rare in the UK)
Ways HIV can NOT be transmitted includes:
- being sneezed/coughed on
- sharing towels/cutlery
- using the same toilets/baths/swimming pools
- contact with animals or insects like mosquitoes
When someone is taking medication for their HIV and they have an undetectable viral load (meaning there isn’t enough of the virus to show up in tests) they cannot transmit HIV to another person. It can take up to six months of treatment for the virus to become undetectable.
To lower your chances of contracting the virus you may be given pre-exposure prophylaxis (PrEP), a course of HIV drugs to be taken by someone at risk to prevent them contracting the virus. If you have been exposed to the virus you can be prescribed post-exposure prophylaxis (PEP). This is a month-long course of medication taken after possible exposure to reduce the risk of contracting HIV.
Getting tested is the only way you will find out if you have HIV. If you think you may have contracted HIV, or are at risk, getting tested immediately is advised. You can get tested for free on the NHS. If you are deemed at risk you may be encouraged to have regular tests.
There are a few different tests available:
Blood test - This is the most accurate test, and if you test positive in other tests, you will likely be offered a blood test to confirm. You’ll usually get your results the same day or within a few days.
Point of care test - Here a sample of your saliva or a small spot of blood from your finger is taken in a clinic. This won’t need to be taken to a laboratory so you should get results within minutes.
Home sampling kit - This is where you take a sample of saliva or small spot of blood yourself at home and post it to a centre that will test it. You’ll be contacted by phone or text with your result within a few days.
Home testing kit - With a home testing kit you can take a sample of saliva or small spot of blood and test it yourself at home. You’ll get results within minutes. Do ensure your test has the CE quality assurance mark and is licensed for sale in the UK.
Again, if you test positive from the point of care test, the home sampling kit or the home testing kit - you will be referred for a blood test to confirm. If this test comes back positive, you’ll be referred to a HIV clinic for further testing and to discuss your treatment options.
Currently there is no cure for HIV. This means once you receive a positive diagnosis, you will always have the HIV virus. Caught early and treated effectively, you should go on to live a long life.
The treatment of HIV involves antiretroviral medications. These stop the virus replicating in the body, allowing the immune system time to repair itself and prevent further damage. A combination of drugs is needed as the virus adapts quickly and can become resistant.
Some HIV treatments have been added together in just one pill - this is known as a fixed-dose combination. These cost more to prescribe, but mean less medications to remember. The combination of medication you take will be tailored to you.
Effective treatment can make HIV undetectable. This means the virus level is so low it is undetectable by tests. This doesn’t mean the virus is no longer there, however it does mean it won’t be passed on.
The importance of taking your medication
Taking the drugs you’re prescribed regularly is very important. Just a couple of missed doses can make the HIV develop resistance and they stop working as they should. This means the viral load increases, which is bad for your health and means you can pass on the virus.
During the first few weeks of taking medication, you may experience some side effects such as headaches, fatigue, feeling nauseous and diarrhoea. Your doctors will work with you closely to ensure you get the best combination of drugs with minimal side effects.
Living with HIV
While this HIV treatment can protect your immune system and reduce the HIV virus, it cannot cure it. This means that once you’ve been diagnosed with HIV, it is something you’ll live with.
Thanks to effective treatment and early detection however, those with HIV can live just as long as those without HIV, with fewer HIV-related illnesses. This means you should be able to live a near-normal life.
As well as taking your medication, looking after your overall health can help reduce the risk of you falling ill. This means taking regular exercise, eating a well balanced diet, quitting smoking and reducing your alcohol intake.
Other things to bear in mind when you have HIV:
- You will not be able to join the armed forces.
- You will not be able to donate blood.
- You will be able to donate organs, but only to others with the condition.
- You will not be able to enter certain countries.
- You may need to get a specialist life insurance policy.
While HIV is no longer necessarily a life-threatening diagnosis, it is still a life-long condition that will impact your life considerably. Understandably then, you’re bound to feel some psychological impacts.
If you already struggle with some aspects of your mental health, for example if you have suffered depression, anxiety or low self-esteem, getting a diagnosis can make these symptoms worse. If your mental health has been good, you may still find it difficult to adjust to your diagnosis.
Worrying about your future, your health and telling people is all very common. You may find you start to isolate yourself. Sadly there can still be stigma surrounding HIV as well as a lack of understanding. This can all affect how you feel about yourself.
If you find yourself struggling after your diagnosis, isolating yourself, feeling low or bad about yourself, you could benefit from seeking support. You may find it helpful speaking to other people who have HIV. You could join a support group (online or in-person) or you could try group therapy.
You may prefer to speak to a counsellor one-on-one about how you’re feeling. Speaking to someone who has experience treating clients with HIV is beneficial as they will have a greater understanding of what you’re going through and the psychological impacts.
Telling people you have HIV
When you are diagnosed with HIV, it’s important to tell your current sexual partner and any partner’s you’ve had since becoming infected. Doing this can be a tough experience; you may feel upset, embarrassed or even angry. Talk this through with your medical team as they can advise who you need to tell and the best way to get in touch - they may even be able to contact them for you.
You may also be wondering whether or not you need to tell your employer. There is no legal obligation to do this unless you are in the armed forces (in a frontline job) or work in a healthcare job where you provide invasive procedures.
You will be protected under the Equality Act 2010 which means employers cannot ask about certain health conditions during the job application process. Employers can then ask health questions once you have a job to help them decide whether or not you can carry out essential tasks for the job.
You may decide to tell your employer what’s happening so they can make any necessary adjustments to your workload or arrange any time off you need for medical appointments. This decision is completely up to you.
Educating people about HIV and what your diagnosis means will hopefully help to ease any fears or concerns they may have. You could even send them the link to this page so they can read more about what HIV is and how it affects people.
Just remember, you are not alone. There are people ready to support you at every step.
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