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When you are living with HIV, it’s important
to think about what you need to live well,
whatever that may look like for you.
Like the guiding points of a compass,
the number four is often considered to
be perfect, guiding and balanced - but
four doesn't need to be all of these things,
it can just be a good place to start if
you're feeling overwhelmed.
To help you live well with HIV, think
about four things you want to focus on
and be ready to talk to your HIV doctor,
nurse, or a support group about why
they matter to you.
Just because you can’t measure how healthy your
mind is in the same way as you can measure your
viral load, it doesn’t mean it isn’t just as important.
There may be things that stop you from feeling like your best self. It could
be lack of sleep, or problems with your memory; feelings of depression or
anxiety or it could be worries in your everyday life.
Remember, you are not alone in your experiences. Talking with a
HIV support group or with your HIV doctor, nurse or another healthcare
provider can help you to cope with changes in your mood and overall
mental wellbeing.
If you are on effective HIV medication and have an undetectable
viral load, you can’t pass on the virus.1 With medication you
can also expect to live as long as someone without HIV.2
So even if it may seem far away, taking care of your body today
is important to enjoy the future you want.
It is important to understand your risks of developing certain conditions (which
you may hear referred to as comorbidities) like diabetes and heart, liver and bone
problems - which may be higher when you are living with HIV.3
You might get uncomfortable symptoms that affect your body – don’t ignore
them! Make a note of what they are so you can talk to your HIV doctor, nurse or
other healthcare provider about how they make you feel, so you can find a
solution together.
As well as looking at yourself on the inside, it is important
to consider how everything around you might be affecting
your health.
From stresses in your social life and relationships, to work, immigration status or finances; they
all matter. You may have had negative experiences regarding your HIV status that can impact
your ability to get the care you need. There are support groups available to you and you can
talk to your HIV doctor, nurse or healthcare provider about any of these issues in your
everyday life and how they might be impacting your health and wellbeing.
Check out our useful resources section for more information on where you
can find
support, or ask your HIV healthcare provider for more information.
There is a strong and supportive HIV community
around you, who understand your experiences and can
offer the help and resources you need, whether you need it
now or later in life.
If you’re not sure where to start, take a look at the
patient support organisations below and the useful resources
section. If you’re not sure of services available in your
area, speak to a member of your HIV healthcare team.
Africa Advocacy Foundation is a London-based organisation that supports people living with HIV, particularly those of Black African and Caribbean backgrounds. Services offered include online and in-person peer support, advice, information and guidance and a hardship programme.
AYMARA is a social enterprise dedicated to supporting health and wellbeing in Latin American communities in the UK, according to their state of health, settlement circumstances, training needs, employment situation, and social and emotional conditions.
CHIVA is a charity in the UK and Ireland whose mission is to ensure that children, young people and young adults growing up with HIV become healthier, happier and more in control of their own futures.
A Greater Manchester-based charity offering free services to all people living with HIV, including one-to-one support, financial advice and counselling.
HIV Ireland provides support to those living with HIV in Ireland. Resources include information and self-help guides, free counselling, peer support, advice on talking to your doctor and more.
If you’re living with HIV in Scotland, HIV Scotland have a resource hub as well as offering free HIV self-testing for those living in Scotland via HIV Self-Test Scotland.
Plus Health provides easily accessible peer support, taking a practical approach to life with HIV to improve knowledge and empower everyone living with HIV to enjoy healthy, long lived and fulfilling lives.
Positive East is one of the largest community-based HIV charities in London. Support services include advice (to access benefit entitlement and housing), peer support, counselling, ReAssure (specialist psychology service for HIV-positive female refugees and asylum seekers), support groups and health and wellbeing workshops.
A national, London-based organisation offering peer-led support and training for people living with HIV.
Sahir House have offered HIV support, prevention, information and training across Merseyside since 1985. Sahir House increases HIV and sexual health knowledge, reduces stigma and campaigns for the rights of those living with HIV and related intersectionalities (gender, sexuality and asylum status).
Sophia Forum exists to empower all women living with HIV to reach their full potential, and to ensure their voices are heard and their needs prioritised within the health sector and wider society.
Spectra is a London-based group offering sexual health services, health screening and a range of services delivered for and by trans people, including counselling, social and therapeutic groups and mentoring.
Terrence Higgins Trust offer services across the country – search for what’s near you here.
Waverley Care supports people living with HIV across Scotland. They offer a range of services from confidential advice and information, to one-to-one support and peer mentoring. You’ll find ways to get in touch on their website www.waverleycare.org.
Here you can find some information which may be
helpful when thinking about your health and wellbeing,
and speaking to your doctor, nurse or HIV healthcare
provider about the four that matter most to you.
If you are not really sure what is most
important to you right now, take a look at
the Find Your Four guide.
Peer support can make a huge difference when it comes to supporting
broader health and wellbeing. Learn more in this short video series:
If you are a peer support worker, please watch these videos for ideas
to help navigate conversations about stress and anxiety, sleep problems,
low mood or depression with
peers:
Here are some materials that might help answer some of the questions
that have been on your mind.
These resources are to help you think about how you can live well with HIV.
If you know someone who is living with HIV, or your community are disproportionately affected by
HIV, you can be part of the solution to improve their wellbeing. Just by knowing more about HIV and
being able to talk about it will go a long way to help support people living with HIV.
If you want to find out more about HIV visit:
References:
1. Terrence Higgins Trust, 2018. About HIV. Available on:
https://www.tht.org.uk/hiv-and-sexual-health/about-hiv/viral-load-and-being-undetectable.
Last accessed on: December 2022
2. aidsmap, 2018. Life expectancy for people living with HIV. Available on:
https://www.aidsmap.com/about-hiv/life-expectancy-people-living-hiv.
Last accessed on: December 2022
3. Terrence Higgins Trust 2022. Living with HIV long term. Available on:
https://www.tht.org.uk/hiv-and-sexual-health/living-hiv-long-term.
Last accessed on: December 2022
Job number: UK-UNB-3183 Date of preparation: December 2022
