Living with HIV
Reviewed by our clinical team
Treatments for HIV have come a long way since the AIDS crisis first began in the 1980s.
Today, receiving a diagnosis is still life-changing, but the long-term prospects for people with the virus are far different to what they once were. With early diagnosis and proper treatment, HIV can be brought under control, allowing you to live a long and healthy life.
If you’ve recently had a diagnosis of HIV, read on to find out what the experience of living with the virus is like, and for some resources on getting the support you need.
Can HIV be cured?
The first thing to come to terms with after an HIV diagnosis is that there is currently no cure for the virus. However, there are treatments that are very effective at preventing the virus from progressing and damaging your immune system.
If you’re diagnosed early enough, and if you’re taking your medication as prescribed, you’ll be able to reduce the amount of the virus in your blood until it’s undetectable in a test. This is known as having an “undetectable viral load” or "being undetectable". It also means you can't pass it on during sex.
How is HIV treated?
Antiretrovirals are the main treatment for HIV. These are tablets that stop the virus from replicating in the body. They are known as ART (antiretroviral therapy) or HAART (highly active retroviral therapy). Most people having treatment get a combination of HIV medicines – normally three.
On average, people with HIV need to take between one and four pills each day for the rest of their life.
If you stop taking your tablets the virus will get the upper hand again and you can pass it on and/or get ill.
When do I need to start HIV treatment?
It’s normally recommended that people who have been diagnosed with HIV start treatment straight away.
After a positive test, you’ll need to have some more blood tests to confirm the diagnosis and check your "viral load" i.e. the amount of virus in your blood. This usually happens at your local sexual health clinic. They will oversee your treatment and invite you for check-ups at regular intervals. They won't tell your GP about the diagnosis unless you want them to.
CD4 lymphocyte cells are white blood cells (sometimes referred to as T-cells) that give an indication of how well your immune system is working. If your CD4 count is very low (e.g. under 200) this is an indication that the virus has progressed and weakened your immune system, increasing your risk of infections and cancer.
In the past, CD4 counts were used to decide on when to start treatment. Today, it’s widely accepted that treatment with antiretroviral should start as soon as possible after a positive diagnosis – even if the CD4 count is relatively healthy.
Your specialist will discuss with you when you should start treatment. It's worth remembering that if you take your tablets every day, this will protect you and others from the disease.
How long does treatment take to work?
Most people who stick to their treatment will have an undetectable viral load within six months.
Reaching this point is a major step, as it means the virus can’t continue to damage and weaken your immune system. It also means you can’t pass the virus on. To stay healthy with an undetectable viral load, you’ll need to keep taking all your prescribed medication every day as directed, and make sure you have regular check-ups.
Most HIV medicines have (potentially serious) interactions with other medicines, so it is super-important to tell your specialist about any medicines or supplements you take or are planning to take.
How long can you live with HIV?
Today, it’s rare for people living in the UK to die as a direct result of HIV. Those who do tend to have been diagnosed very late, or a very long time ago; they might have underlying health problems or they might not have been able to stick to their treatment.
However, because of the impact that the virus has on the immune system, people with HIV are more likely to develop other common health problems, such as diabetes, heart or kidney disease, and on average, 16 years before HIV-negative people.
By taking your medication, getting regular checks, and living a healthy lifestyle, you can help to reduce your risk of developing serious illnesses like cancer and heart disease.
What lifestyle changes do I need to make now I’m HIV-positive?
It’s important to take care of your body by exercising regularly and eating a well-balanced, preferably home-cooked diet, whether or not you have HIV. Try to follow the kind of balanced diet set out by the NHS Eatwell Guide, and try to incorporate regular exercise into your routine.
It’s also a good idea to cut out unhealthy habits, like smoking, drinking a lot of alcohol, and taking recreational drugs. Many recreational drugs can interact negatively with HIV medication.
How long can you live with HIV untreated?
When left untreated, HIV causes serious damage to the immune system. The Mayo Clinic advises that, untreated, HIV will progress to AIDS (acquired immune deficiency syndrome) within eight to 10 years. At this point you’ll have a high risk of developing unusual and/or serious infections or cancers that overwhelm your immune system and are usually impossible to treat.
This is why it’s so important to get tested for HIV if you think you’ve been exposed. The sooner you can start treatment, the longer and healthier your life will be. Find out more about when to get tested for HIV.
Support for living with HIV
Although the prospects for HIV-positive people are now very good, there’s no denying that getting a diagnosis can be really scary. The good news is that you’re not alone. There’s a lot of support available for people who have HIV.
First off, you’ll have direct help from your healthcare team, who you’ll check in with regularly. If you’re struggling mentally, your team will be able to refer you for counselling, and suggest support groups and helplines.
Charities like the Terrence Higgins Trust are also a great resource for people with HIV. The THT has centres around the UK that offer a range of services, including testing, sexual health advice, therapy, and general support for people living with HIV.
Get tested for HIV
If you think you might’ve been exposed to HIV, it’s important to get a test.
Testing can be done at a number of places, including sexual health and GUM clinics, clinics run by the Terrence Higgins Trust, and some GP surgeries and contraception clinics. You can also order an at home HIV test kit from Online Doctor and post a sample to our lab – we’ll provide results within three days.
References
https://www.tht.org.uk/hiv-and-sexual-health/about-hiv/viral-load-and-being-undetectable
https://www.tht.org.uk/hiv-and-sexual-health/living-well-hiv/hiv-treatment/how-hiv-treatment-works
https://www.nhs.uk/conditions/hiv-and-aids/treatment/
https://www.aidsmap.com/about-hiv/cd4-cell-counts
https://www.aidsmap.com/about-hiv/life-expectancy-people-living-hiv
https://www.tht.org.uk/hiv-and-sexual-health/living-hiv-long-term
https://www.tht.org.uk/hiv-and-sexual-health/living-well-hiv/staying-healthy/recreational-drugs-and-hiv
https://www.tht.org.uk/our-work/our-campaigns/cant-pass-it-on
https://www.aidsmap.com/news/mar-2020/yes-same-life-expectancy-hiv-negative-people-far-fewer-years-good-health
https://www.mayoclinic.org/diseases-conditions/hiv-aids/symptoms-causes/syc-20373524
