Why We Need Staff with Lived Experience

January – March 2026

“You really have no idea what it feels like!” 

This is one common response presented in movies when a friend consoles the hero or heroine: “I know what you are going through.” 

We all undergo difficult times, and sometimes it rankles when someone who hasn’t been through the same experience claims to understand what we are going through. It gets worse when they start to offer advice through their own lens or point of view. 

 

The Value of Lived Experience 

For many reasons, lived experience matters, chief of which is that only someone who has been through a particular experience understands the nuances and complexities of dealing with it.  

This is why, for instance, it is important for organisations, and especially those that work with health issues – physical or mental – to make sure they are diverse and include the voices of people who have been through experiences as different and varied from each other as possible. 

 

When Empathy Can Only Take Us So Far 

When someone is told to understand another person by “walking in their shoes”, it is only natural that the person stepping into those shoes will come with their personal views, biases, life experience, and baggage. 

This is not to downplay the importance of empathy. It is vital, but sometimes it can only take us so far. By claiming to understand what others are going through, we may hurt them by offering advice that is misguided, or worse, irrelevant. 

 

Lived Experience Offers Valuable Insight 

What, then, is the best way for organisations to deploy persons with lived experience?  

Obviously, it would be to focus on an area that they have some experience with.  

At WE CARE, we hire persons with lived experience as recovery guides, counsellors and in areas such as communications. Since the centre began, it is a cornerstone of our hiring policy to deploy persons with lived experience wherever feasible. Today easily one third of our staff have lived experience.  “Staff with lived experience can offer relatable insights that help beneficiaries feel understood and less alone. Their presence normalises the struggles clients face and serves as a living example that recovery is possible,” shares Roy.  

Lived experience is another reason why recovery support groups like Alcoholics Anonymous and Narcotic Anonymous are so popular. The effortless understanding and the non-judgemental nature of groups of people who have gone through the exact same experience make them appealing and effective. The insights that one can get from peers who have been through similar situations are superior to those expressed by friends and family, however well-meaning they are. 

Ahmad explains: “Every lived-in experience is a living testament that recovery is possible, that honesty and being vulnerable can open doors to being truly seen. 

When you see someone who has lived the same darkness and now stands sober, grounded and purposeful, it breaks that belief instantly. Something no textbook, professional training or theory can replicate.” 

 

Lived Experience Provides Feedback and Clues to Emotional States 

“Having achieved stability in my own recovery, I offer a perspective ‘from the ground’. I can comment on what may work and what might not, and sometimes see the blind spots in the views of those who aren’t in recovery,” relates Jat.  

Perspectives such as this inform the tweaking and refinement of practices and activities conducted here at WE CARE. 

For recovery guides, the ability to detect issues is useful. As they are familiar with addictive behaviours and emotional states, they can recognise signs of shame, insecurity or emotional distress in clients, and offer help.  

Scott agrees: “We can understand everything they go through better, because we have gone through most of what they have. We will also not judge them, so that makes it a lot easier to work with them.” 

 

Why Lived Experience and Empathy May Not Match   

Although counsellors are armed with a Master’s degree and may have years of experience working with clients, one client at WE CARE offers this view: “Counsellors can help but they cannot truly understand as they have not gone through the same experience.”   

Enid has this to say about her work: “I have the experience so I can share and give. The beneficiaries will also think it is easier – since we have the same issues and we can speak the same language.” 

This underlies the often-cited problem facing those who work with clients with mental health struggles – that empathy may not match up with what lived experience confers. 

It is partly explained by the phenomenon known as the focusing illusion, a term coined by Nobel psychologist Daniel Kahneman to explain why there can be a mismatch between lived experience and the perception of someone looking in from the outside. 

It is a thinking trap – a cognitive bias, to use the clinical term - where people overestimate the impact of a specific event or condition on their overall happiness because they focus overly on it without considering other aspects of their life.  This leads to misjudgement, for example assuming that persons with cancer are constantly miserable, or those who win the lottery should always be happy.   

We start viewing them as one-dimensional persons, pitying or judging them, and proffering solutions they don’t need. The truth is that the misery and happiness are temporary - we all adapt and adjust to our situation.  

“The mismatch in the allocation of attention between thinking about a life condition and actually living it is the cause of the focusing illusion,” explains Dr Kahneman. 

“When you see someone who has lived the same darkness and now stands sober, grounded and purposeful, it breaks that belief instantly. Something no textbook, professional training or theory can replicate,” comments Ahmad. 

 

The Power of Stories  

Stories matter. They hold power. They carry universal themes and can shape how we understand behaviour and values. From bedtime tales to personal history, they educate, inspire, and create change. Those from our lived experience make compelling narratives that can help others going through similar challenges and issues. They also aid us to gain better insight and understanding of our mental health condition. 

Stories can break down the stigma and isolation surrounding mental health, especially for those who suffer quietly because they find it difficult to access proper help. They remind us that no one is truly alone in their challenges. They can make health care look more human and normalize conversations about mental health issues. For youth especially, these stories enrich connections with peers and families, providing hope and belonging.  

“At WE CARE, I’ve witnessed countless stories of survivors who inspire me daily. I have seen newcomers arrive feeling hopeless, scared or convinced they are a ‘lost cause’,” observes Ahmad.  

But when persons with lived experience share their personal journeys, it can be an impactful tool to foster connection, empathy, and healing.  

For many working through their addiction, speaking up can feel intimidating or isolating. They may fear being judged, misunderstood or pitied, but when they hear someone sharing openly about their own personal experience, their perspective and thoughts can shift. 

Stories are a Catalyst for Change 

Advocacy is defined by the Oxford Dictionary as “the giving of public support to an idea, a belief, or a course of action, such as for human rights.” One of its most powerful forms is the use of stories. They raise awareness and put a human face on issues, making them personal and relatable. Sharing stories can encourage those who have yet to find their voice, speak up about their experience. They can reveal struggles with healthcare resources, highlight coping strategies, and demonstrate resilience. 

Awareness is the first step, and once awareness grows, stories can become a catalyst for action. Stories can influence how treatments are designed, how policies are shaped. They can inspire dialogue, reduce stigma, and encourage others to share their own journeys.  

Most importantly, stories drive conversations towards real people and real-life matters and away from diagnoses and disorders. They deepen understanding and expand compassion. They remind us that mental illness is not just about conditions – it is about people. 

 

The Perspective from one Person’s Lived Experience 

“One of the greatest challenges beneficiaries in recovery face is navigating relationships with family members who have been deeply hurt by their addiction. The judgement, blame, and emotional distance from loved ones can feel overwhelming, often escalating into conflict, increased isolation, and, for many, eventual relapse. 

Through my own journey, I learned that shame was the underlying driver behind my reactive and withdrawn behaviours. Feeling “not good enough” fuelled self-destructive patterns that strained my relationships further. It took years of counselling and working the 12-step programme to rebuild my self-esteem and self-worth, which in turn helped me repair connections with my family and friends. 

Because of this, I feel strongly that others should not have to struggle through the same long and painful process alone. When interacting with beneficiaries who experience similar challenges, I share my personal story. In helping them to recognise the destructive cycle of shame, I provide a safe, non-judgmental space where they can talk openly, feel heard, and feel respected. 

This approach reassures them that they are not alone, supports the rebuilding of healthy relationships, and strengthens their confidence to make positive changes – key factors that are crucial for sustaining long-term recovery,” recalls Roy. 

 

The risks that staff with lived experience face 

One potential risk is that they remain susceptible to influences and triggers, making it essential for them to continue, even when attending to work-related matters, to prioritise their own recovery.  

This includes attending group meetings, maintaining regular contact with their sponsor, and staying connected with their counsellor. Ensuring that they maintain their recovery also demonstrates the centre’s commitment to safeguarding the effectiveness and wellbeing of staff with lived experience. 

Says SL: “In recovery, we have a saying that goes ‘we can be recovered but not cured’. This means that, as even as staff, we remain vulnerable to triggers, cravings, and urges –  just as any other person in recovery would. The risk of relapse is real, and maintaining consistency in our “top-line” actions is essential. These include attending support group meetings, making outreach calls, and prioritising our mental wellbeing.” 

 

Persons with lived experience can help caregivers 

One final aspect of deploying staff with lived experience that has received much recent attention revolves around the idea of helping family members to better support their loved ones who are working on their recovery. 

Caregivers can gain benefits and insight from the unique lens of peers with lived experience who are managing their own recovery – they learn how addicted persons are affected, how they feel and how they want to be treated. This understanding can help caregivers to avoid conflict, to better communicate and to cope with their own uncertainty and sense of helplessness. They can prepare for situations and challenges with their loved ones by managing their own biases and emotions. 

“I was introduced to a client who was struggling with gambling and had to deal with his creditors. As compulsive gamblers, handling creditors is unavoidable and sometimes scary. When you don’t have enough to pay, you will go to those closest for help.   

In this case, it was his mother, and she was unsure about bailing her son out – having done it countless times. She was working with a counsellor too, who thought it would be helpful if she could hear from the perspective of someone in recovery.    

What the client was doing was the same thing I’d done in the past. Since getting sober, I've been made fully aware of the hurt I caused my mother. And so I shared with her what was going through my mind at the time and my opinion on the golden question – whether she should help him (again).   

I remember hearing her break down, because she felt so much despair and yet desperately wanted her son to be okay. I explained, with the benefit of hindsight, that her way of helping may end up not helping.   

The call lasted about an hour, and at the end she seemed calmer. Significant others or caregivers can get so lost in the chaos, and sometimes just need to hear from someone who’s walked the journey and can relate to what they’re going through,” recounts Jat. 

 

By Leslie Goh 

We gratefully acknowledge (in alphabetical order) the participation of staff, current and former, with lived experience: Ahmad, Enid, Jat, Ahmad, Enid, Roy, Scott, SL