Being told you are HIV+ can cause any variety of emotional responses including shock, anger, fear, distress, shame or feeling emotionally numb. There is no ‘right’ or ‘wrong’ way to react or an expected time limit for these feelings to change. It is important that you take the time you need to explore your feelings and work things out.
There is lots of help and support available. At the time of testing you will be offered the opportunity to talk about your feelings about the diagnosis and to ask as many questions as you might have about how your life will be affected. Don’t worry if you forget to ask anything, or can’t take everything in – this is to be expected. You can always ask again at another time or be guided to written/ online information.
There are a range of different services available to support you in managing your positive diagnosis, whether around treatment options, daily living or finding peer support networks.
Adjusting to diagnosis and treatment
Adjusting to a positive diagnosis can be very challenging, where emotional distress and feelings such as anger, guilt, fear, or shame can make it very difficult to think positively about the future, and to think about the options available for moving forward. For most people these feelings about having HIV change over time and people gradually come to terms with living with HIV. However some aspects of living with HIV can still cause difficult feelings and some people may experience ongoing difficulties with low mood, depression and/or anxiety.
It’s important to be able to recognise these difficult feelings and know that you have a right to feel this way. By acknowledging these feelings you can then begin the process of seeking help and support to overcome these difficulties.
Anyone can be affected by emotional difficulties, or suffer from mental health issues at any point in their lives – recent research has suggested that one in every four people in the UK will experience some sort of mental health problem at some point in their lives so it really isn’t uncommon. However, living with long-term conditions like HIV can mean that there is a greater likelihood you would encounter these problems for a host of different reasons.
Living with HIV can affect people in different ways. At times people can feel that they are coping and managing well. At other times people may feel anxious, stressed or depressed due to the way that HIV affects their lives. It is really important to look after your mental and emotional health and wellbeing as both have a significant impact on your ability to not only adhere and respond to your treatment regimes, but to also manage and get the most from your day-to-day lives.
With the advancements in HIV treatment, more and more people living with HIV are living longer, healthier lives, and adapting their lives and relationships to look after their emotional, physical and mental health and wellbeing.
Many elements may contribute towards living well with a HIV+ diagnosis including:
- Accepting your own HIV status
- Having choice around disclosure of HIV status
- Positive relationships with partners, families etc
- Goals for the future
- Looking after your own physical health and wellbeing through healthy diets, rest and exercise
- Access to care and support
- Being in control of your own choices regarding alcohol, drug and tobacco use
The prejudice and stigma that people have either directly experienced, or are concerned they may be subjected to, still presents major barriers to people living with HIV accessing the support, services and treatment that they need.
Experiences or perceptions of HIV related stigma can have major effects on an individual if left unmanaged including:
- Increased anxiety and distress
- Distrust of services around issues including confidentiality
- Lower self-esteem and lack of confidence
- Lessened health and wellbeing
- Fear of criminalisation
- Lower expectations for self and others
- Feeling unable to disclose status to friends, families, work colleagues or partners
All of which have a significant impact, not only on a person’s ability to access the treatment and support required, but also their ability to adhere to their treatment and care regimes.
Stigma and discrimination can be very difficult to challenge or manage and it is really important that you remember that it is unacceptable and you do not deserve to be treated this way. If you then choose to challenge this treatment, you might want to consider the support, resources or information you might need to do this. A really useful resource you may wish to read when thinking about how you might be affected by HIV related stigma, and how you might wish to address it is the NAM resource ‘HIV & Stigma,’ available to download here.
The Equality Act 2010 gives protection to disabled people from discrimination in a number of different areas, including employment and recruitment. HIV is considered to be a disability for the purposes of the Equality Act from the time of diagnosis. While this identification may in itself appear stigmatising – it does provide protection of rights for people living with HIV in key aspects of all our lives (i.e. housing, benefits, employment, goods and services).
When we are faced with any difficulty it can be made that much harder if we feel we have to manage it by ourselves. It is often helpful if we are able to talk through any difficult feelings whether this is with families, partners, friends or colleagues. It can also be beneficial to access specific support services such as the Forge Centre, where specific Social Work support is available. You can also speak to one of the team about accessing our psychology service.
You may also find it useful to access peer support networks and HIV services which offer safe, confidential spaces to access one-to-one support and advice, time out from difficult situations, and the opportunity to share and learn from other people who have similar experiences or anxieties.
Deciding when (and if) to tell anyone you have HIV can be a really daunting prospect. The fear of rejection or negative reactions is often a real and understandable barrier in talking honestly and openly about your HIV status.
Psychologists, health advisers, specialist nurses and other HIV support workers can be helpful in talking through feelings about this, helping to formulate a plan for telling people your HIV status and dealing with any issues that arise afterwards.
HIV services in Sheffield can offer advice and support about speaking to others about your HIV status.
- The Health Adviser / Specialist Nursing Team at Sexual Health Sheffield on 0114 226 8888
Talking to other people who are also HIV positive may be useful. Sharing experiences, anxieties, concerns and solutions with other people in a similar situation can really help.
Please let the specialist nurses know if you would like to be referred to the HIV Peer Mentor Service.
Although you don’t have to tell everyone (or anyone) that you are HIV positive, it is advisable to inform current, past and future sexual or injecting partners of the potential of infection. Research tells us that people who are HIV negative (or do not know their HIV status) often expect people to tell them they have HIV before having sex or sharing injecting equipment and that they generally assume that someone is HIV negative unless told otherwise. If you do not feel able to inform partners yourself, a specialist nurse or health adviser can help and even do this on your behalf without mentioning your name.
It is also advisable to share information about your HIV status with your GP and other health care workers. They can then offer you the best and most appropriate advice and treatment taking into account factors including immune system functioning and any HIV medication you may be taking.
If you are a health care worker, you are obliged to inform Occupational Health of your HIV status. They will not inform your manager or colleagues, but will ensure that you do not undertake exposure-prone procedures. HIV is covered by the Disability Discrimination Act, so your employer is obliged to make reasonable adjustments to your work if it is not appropriate for you to continue in your current work role.
There is no legal obligation to tell your sexual partners that you have HIV.In England and Wales people have been prosecuted for reckless transmission of HIV when they knew they had HIV, did not tell their partner, and went on to have unprotected sex, infecting them as a direct result of this.
In Scotland the law is largely the same, except that a case can also be brought if transmission hasn’t taken place but someone has been put at risk of transmission without their consent or knowledge.
There is robust research evidence to say that once you are on effective anti-retroviral treatment and have an undetectable HIV viral load, suppressed (below limit of detection) for at least 6 months, you won’t be able to pass on HIV. This supports the message of the international campaign U=U (Undetectable = Untransmittable).
An undetectable HIV viral load only prevents HIV transmission to sexual partners. Condoms also help prevent HIV transmission as well as other STIs and pregnancy. The choice of HIV prevention method may be different depending upon a person’s sexual practices, circumstances and relationships. For instance, if someone is having sex with multiple partners, they might consider using condoms to prevent other STIs.
Some of the benefits of telling sexual partners of your HIV status include:
- It can help you to talk honestly and openly about making the sex you have safer and, therefore, reduce the risk of HIV transmission to others
- It can then make you more relaxed and at ease about sex. If we are relaxed and at ease then we are more likely to enjoy sex more
- Telling partners can mean not having to live with the stress of keeping HIV a secret. Even though it may be a difficult decision to make, ideally, you should discuss your status with sexual partners. This allows you and your partner to make decisions together about sex.
Talking these issues through with an HIV Specialist Nurse, or Health Adviser can be really helpful in planning for when and how to talk to your partners about your HIV status and also how to better negotiate sex that is safer for everyone involved.
Although people can’t plan for others reactions, having a disclosure plan and a good support system (this may be a key healthcare worker or close friend etc.) can be really helpful before, during and after disclosure.
When planning to disclose it can be useful to consider the following:
- Think about and ask yourself why you want people to know. Do you want or need a specific kind of support from the person that you have decided to tell?
- What agreement would you like to make about them telling other people? How will you feel if they tell others?
- Plan what you are going to say, rehearse with a friend, a health-care worker or someone else who is HIV positive
- You may want to bring information, leaflets, magazines, websites to show the person you are telling, or to leave for them to read
- Make sure you do it in a safe place so that everyone is comfortable and in an environment where you can have an honest discussion
- Let a friend or support worker know so that they can check that you are okay and give post disclosure support
- Think about how disclosure will affect the person you are telling and think about the support they could also get from HIV healthcare professionals and how they might access this
- Talk with other people who are HIV positive (maybe visit a local HIV peer support group) about different ways to disclose to others
Remember that there is absolutely no right or wrong way to do it. The methods of disclosure that you want to use are personal to you and should be what’s best for you. The really important thing is that you have control over who you tell, when you tell, how you tell and if you tell.
Whatever the reaction you get from disclosure to another person there is support available to help you plan and prepare for disclosure and to talk through how it went – whether you get a positive and supportive outcome or not quite the response that you had hoped for.