I have just found out I am HIV positive: what do I do now?
I have been living with HIV for more than 10 years — you might say I am a bit of an HIV old-timer.
As I have just celebrated another year living with HIV, I thought it was a good time to put together some pointers for people who have recently got their news.
What would I tell my newly diagnosed self if I knew on 2 January 2007 what I know now?
The first thing I want to say is:
DON’T PANIC!
Since my diagnosis in 2007, so much has changed in terms of our knowledge about how to prevent people getting HIV (with PrEP) and how we help people with the virus to live well and happily into their old age.
U=U: Undetectable equals Untransmittable
We know with certainty that people with an undetectable viral load — when you are successfully on HIV medication — cannot pass it on. You might hear this talked about as U=U — or undetectable equals untransmittable.
The research evidence is conclusive. Own it. I hope the U=U message empowers you as much as it does me.
I hope you find these videos I am in helpful:
I won’t lie to you: it can be tough at times living with the virus. Although there might be challenging times ahead, you can make HIV a small part of your life.
Don’t ever feel pressured into telling anyone your positive status
It should always be your choice who you tell. While thankfully I’ve got to a place where I feel comfortable being really open about my status, I know that might not work for everyone.
I now have an amazing group of supportive friends as well as a loving family right behind me, and I am able to describe myself as unashamedly positive. No one is going to force me back into the viral closet, and it is not my dirty little secret.
HIV is a virus — nothing more, nothing less
HIV is not a judgement. It does not matter how you contracted the virus. You are the same person you were before you got your news. Many of my friends living with HIV are in loving relationships, some of them with HIV-negative partners. Some of my friends have gone on to have children who were born without the virus. You are still worthy of love and respect.
Find your support network
The newly diagnosed group I went to in 2008 — about 18 months after my diagnosis — changed the way I thought about living with HIV. It gave me so much more confidence and suddenly I didn’t feel quite so alone. I also found my support network through volunteering with various HIV charities, including Terrence Higgins Trust.
Remember support can come in lots of different forms: ‘formal’ structured support through your HIV clinic or an HIV charity — like those listed below — or it could be ‘informal’ support from your friends. Take time to find out what’s available and what’s going to work for you.
Receiving an HIV-positive diagnosis can feel very isolating, but it shouldn’t have to be like that — there are people out there who will have gone through similar things and can help you get through it.
As people living with HIV, we strive to support each other. I volunteer as a peer mentor for Positively UK’s Project 100, which aims to ensure 100 percent of people living with HIV across the UK have access to high quality peer support.
Don’t ever be afraid to ask questions about your treatment
This is especially true if you’re getting side-effects from meds that are causing you problems. Try to build a good relationship with all the people involved in your care — your HIV consultant, nurses, health advisors and others. I’m really lucky at my HIV clinic — they are amazing and world leading.
Take control
This final bit of advice works for me, but it’s entirely personal and might not work for everyone. I guess it’s because happily I’m a bit of a geek. Learning as much as I can about how HIV works, the different treatment options (the different classes of antiretrovirals etc), the latest research and knowing where to look for reliable information has helped me to feel in control. I’m in control of the virus rather than it being in control of me.
Everyone’s journey is different
Don’t feel down on yourself if it takes you time to readjust. With time, I hope you can get to a place where HIV becomes the least interesting and most inconsequential thing about you. Try not to dwell on the past and try to look forwards with positivity. Believe me — it will be okay.
- An edited version of this post appears in issue 164 of FS magazine
Sources of information and support:
- Terrence Higgins Trust: myHIV and THT Direct
- HIV i-Base
- NAM Aidsmap
London-based organisations offering support:
- Body and Soul (Islington): bodyandsoulcharity.org
- The Crescent (St Albans): www.thecrescent.org.uk
- Living Well (Ladbroke Grove): www.livingwellcic.com
- Metro (South East London): metrocharity.org.uk
- NAZ (Hammersmith): www.naz.org.uk
- Plushealth (online): www.plushealth.org.uk
- Positive East (Bethnal Green): www.positiveeast.org.uk
- Positively UK (Islington): positivelyuk.org
- River House Trust (Hammersmith): riverhouseuk.org
HIV facts:
- HIV [Human Immunodeficiency Virus] attacks the immune system and weakens the body’s ability to fight diseases.
- Antiretroviral medication — also called ARVs, combination therapy, or HIV treatment — lowers the amount of the virus in the blood to undetectable levels, which stops it from damaging the immune system, and means it cannot be passed on to other people.
- HIV treatment is now extremely effective and easier to take than ever before. Many people take just one or a few pills once a day.
- As a person with HIV you should live just as long as an HIV-negative person — especially if you are diagnosed early and begin treatment. Being HIV positive might actually help you live to longer because you will access medical care throughout your life.
- Aids [Acquired Immune Deficiency Syndrome] can develop when HIV damages the immune system to such an extent that it can no longer fight off a range of often rare infections it would normally be able to cope with. In the UK, the term ‘late-stage HIV’ is now generally used as it is much less stigmatising. HIV treatment stops the virus from damaging your immune system.
- HIV cannot be passed on through casual or day-to-day contact. It cannot be transmitted through kissing, spitting, or sharing a cup, plate or toilet seat.
