Taking Action: Mental Health Awareness Week in conversation with Iain Johnston
This Mental Health Awareness Week, the theme is taking action for better mental health. At Waverley Care, that action happens through one-to-one support, community group activities and peer support from people with lived experience, helping people living with HIV feel connected, understood and less alone.
To mark the week, we spoke with Waverley Care’s Senior Peer Support Coordinator, Iain Johnston, about the impact of peer support, overcoming stigma and isolation, and why no one should have to face HIV alone.
Why Mental Health Matters in HIV Care
For Waverley Care, taking action for better mental health happens every day with the help of people like Iain. Through peer support, social groups, clinics, and community spaces, people living with HIV are helped to feel connected, supported and understood by listening and leading with lived experience.
While advances in HIV treatment mean people can live long and healthy lives, many people living with HIV still experience stigma, isolation, anxiety and periods of poor mental health.
Research indicates that individuals with HIV are twice as likely to experience depression compared to those without HIV. For some, fear of judgment and discrimination from peers or family members can make it difficult to ask for support or speak openly about what they are experiencing.
Iain explains that “living well with HIV is the focus for anyone diagnosed with the virus. This includes not just achieving physical well-being with a suppressed viral load and a healthy immune system but also having the confidence and resilience to cope with stigma.”
He explains that feelings of loneliness and self-stigma can have a significant impact on well-being, particularly for people who feel they must manage their diagnosis alone.
“Maintaining good mental health allows us to enjoy long, healthy lives and not be held back by a tiny virus which is only a very small part of who we are.” Iain states.
There is no health without mental health.
The Importance of Peer Support
For many people living with HIV, peer support can be life-changing. It’s an opportunity to meet someone who understands experiences you may have thought you were alone in; someone who can empathise, offer advice rooted in lived experience and create a space where you feel fully understood.
We know that being able to have an open discussion with someone who understands where you are coming from can be an empowering experience.
As Iain explains, “Peer supporters are just other people living with HIV, who are willing to use their lived experience to support others.” This can happen in whatever way feels most comfortable during your journey, whether through one-to-one conversations, social groups or mentoring. Support can be informal or more structured, depending on what someone needs at that time, with people supported in a way that feels safe, welcoming and right for them.
For many of the people Waverley Care supports, “just being amongst other people living with HIV can help alleviate feelings of isolation,” Iain explains, while shared experiences can become the foundation for confidence, friendship and community. Peer support can remind people that they do not have to navigate HIV alone.
This support is about rebuilding confidence, self-acceptance and a sense of belonging that people can sometimes lose following a diagnosis. Many people go from feeling connected to the world around them to feeling isolated and uncertain.
Waverley Care’s peer support and wider services remind people that they are not alone, offering a community that understands what they are going through without judgement; we’ve been there, and we get it.
While an HIV diagnosis may become part of someone’s life, so too can a network of support, guidance and people who genuinely care about you beyond your diagnosis.
You wouldn’t get swimming lessons from someone who couldn’t swim, and the same applies to living with HIV.
What Support at Waverley Care Looks Like
Many of Waverley Care’s groups are centred around the social connection element and creating safe and welcoming spaces for anyone who is affected by HIV. As Iain explains:
“Many of our support groups are based around social settings and can involve outings to events, concerts, shows, etc., or can be groups for crafts and activities, so they are friendly social spaces where everyone just happens to be living with HIV.
Group agreements are in place to protect anyone attending, including confidentiality; however, although some group sessions can involve discussions around HIV, participation in discussions is entirely voluntary, and many of the group sessions are just social safe spaces to mix and make friends.”
Support can also be accessed in different ways depending on what feels most comfortable for the individual at that time. Some people may prefer group settings, while others may benefit from one-to-one support and “a quieter chat with someone else living with HIV, either in a private setting or something more social such as a café”, Iain explains.
Peer support is also available in selected clinics, allowing people to speak with someone living with HIV alongside healthcare appointments in a safe and informal setting. Support is designed to be flexible and adaptable throughout someone’s journey.
Alongside peer support, Waverley Care also offers wider support through Health Improvement Coordinators, who, as Iain explains, can help with issues “indirectly impacted by HIV such as housing, benefits, accessing healthcare and general wellbeing.”
Courses are also available for people at different stages of their journey, from “recently diagnosed courses through to more advanced activism and media training”, for those who want to build confidence or become more involved in advocacy and peer mentoring.
Iain also highlights the importance of support for family members and friends of people living with HIV, explaining that navigating the diagnosis of a loved one “can be upsetting and complex.” Being able to access “reliable information and guidance” can help people better understand HIV and feel more confident in supporting someone in their life following a positive diagnosis.
Peer Supporters are open-minded and non-judgemental, so anyone attending peer support should feel able to discuss anything about HIV that is concerning them without being afraid of judgment or disapproval. Peer support is a SAFE space.
Rebuilding Confidence and Self-Acceptance
We’ve witnessed the incredible work Iain does, which has a significant impact on people’s confidence, well-being, and sense of self. With people becoming more comfortable in themselves and their HIV status after connecting with others who understand.
Iain has seen people come and go after building self-esteem and confidence, while others continue attending groups because of the “great sense of community within the groups”. For many people, these spaces become more than support sessions, with people finding long-term friendships, trusted confidants and a sense of routine and belonging through attending regularly.
Overcoming Fear, Stigma and Isolation
We understand that every referral that comes into Waverley Care, whether through the NHS, our website or a phone call, may have taken a huge amount of courage.
For people living with HIV, asking for help can feel incredibly difficult. Fear of judgement, isolation, self-stigma and past negative experiences can all make it harder to reach out or trust new spaces and services.
Reflecting on his own experiences, he explains that “finding myself amongst other people living with HIV after 5 years made such a significant impact on me,” which is why he is passionate about helping others feel understood, welcomed and less alone from the very beginning.
Iain acknowledges that reaching out for support can feel scary, especially for people who may have experienced stigma or discrimination in healthcare or social settings in the past. For others, simply entering a new environment or asking for support can feel overwhelming.
Waverley Care’s peer support services are designed to help people access support in a way that feels safe, gentle and manageable. As Iain explains, “it’s entirely up to you and what you are comfortable with,” whether that means attending a group, meeting one-to-one, or simply having an informal conversation to begin with.
Support aims to provide “a gentle introduction to the service” where people feel welcomed, understood and able to move at their own pace.
I am continually motivated by the drive to ensure that no one has to face HIV alone and that having access to someone else living with HIV should be available to everyone, as I know how important that would have been to me.
Taking Action Every Day
For Iain, taking action for better mental health means creating spaces where people living with HIV can live well physically and mentally. While peer support often begins with conversations and shared experiences, the work behind it reaches much further.
As Iain explains, “when I started doing peer support, I didn’t envision it developing into being such a diverse workload.” Alongside supporting individuals and facilitating groups, his role also involves outreach, education, fundraising, advocacy, training peer mentors and working with organisations across Scotland to improve support for people living with HIV.
Reflecting on what motivates him and his ‘why?’, Iain explains that his own experiences of isolation following his diagnosis continue to shape the work he does today. After spending years without meeting anyone else living with HIV, he describes how connecting with others had “such a significant impact on me,” leading him into a career of activism, advocacy and peer support.
This Mental Health Awareness Week, Waverley Care is recognising that taking action can look different for everyone. Whether it is reaching out for support, sharing experiences, attending a group, or simply listening without judgment, small acts of connection and community can have a lasting impact on mental health and well-being.
Getting Support and Taking the First Step
Support from Waverley Care can be accessed in several different ways, depending on what feels right for you.
People can be referred through the NHS, connect through in-clinic peer support or self-refer directly through our website.
Support can also be accessed by emailing hello@waverleycare.org, calling 0131 558 1425.
As Iain explains, the service aims to make accessing support feel as welcoming and manageable as possible. Initial contact can happen by phone, email or in person, allowing people to discuss what kind of support may feel right for them.
For anyone considering reaching out for the first time, Iain reassures people that peer support is “friendly, informal and welcoming and much easier than you might think.”
No one should have to navigate HIV alone, and support is available whenever someone feels ready to take that first step.
Support Our Work
Every conversation, peer support group and safe community space is made possible through the support of people who believe no one should face HIV alone.