The Hidden Emotional Toll of Advocacy
Managing Vicarious Trauma When Working within the Neurodivergent Community
In conversation with Dr Tony Lloyd (Former CEO of ADHD Foundation) and Dr Henry Shelford (CEO of ADHDUK)
As a mental health nurse, I spent years learning to support others through some of their most challenging moments. This included being a compassionate and caring pillar in their lives for a short while to help them to build back out of their pain and develop a life worth living, or even giving honest and difficult truths about how they might be playing a role in their struggles.
However, when supporting people in severe emotional distress as an empathetic person, it can have a significant impact on your own wellbeing if you aren’t looking after yourself and being mindful of some of the underlying processes and interactions that can negatively impact your own experience. Part of my nursing journey included training on how to manage something called vicarious trauma (sometimes called secondary trauma).
Unfortunately, many people who work closely supporting and advocating for and with neurodivergent people (coaches, therapists, online influencers, virtual assistants, community managers, or even friends who provide peer support) aren’t given this kind of training. And yet, they’re often exposed to deeply personal stories, painful disclosures, and ongoing emotional demands from people desperate for support.
I’m sure many of you in this space receive regular emails of people expressing their deepest pain, how the system has broken them, and their stories of discrimination and marginalisation.
As every new damning piece of media stirs the pot of emotional distress for the community [I’m writing this just after the American administrations statement that Autism is caused by…. paracetamol. And obviously still vaccines are being said to play a role, even though that argument is backed zero academic evidence and has been widely debunked], it is often the helpers and supporters in positions of influence and trust who face the burden of responsibility to “say something”, “fight back”, and “support others” as ‘visible’ advocates. Although it is often a privilege to be in a position where we can support others, the constant unrestricted exposure to this pain alongside a failure to respond appropriately to it, can have lasting impacts on our own wellbeing.
I’ve been thinking about this a lot lately.
How can I help those who hear these stories feel a little less alone? How can I shine a light on how vicarious trauma might be impacting you, unknowingly.
So, I had a few conversations with some of the most influential people in this space and those who have been supporting neurodivergent people for a long time. I will steadily be adding to this blog as I discuss with more and more people.
Dr Tony Lloyd (Former CEO of the ADHD Foundation)
Dr Henry Shelford (CEO of ADHD UK)
What is vicarious trauma?
Vicarious trauma happens when you absorb and internalise the emotional pain or struggles of the people you help.
It relates to the emotional and psychological distress experienced by those exposed to the trauma of others, such as hearing about traumatic experiences indirectly from others or by the cumulative effect of repeated exposure to traumatic material. As mentioned above, this can include the unfiltered distress of those struggling through emails, in-person chats, and in discussion on social media. Over time, the build-up of vicarious trauma can lead to compassion fatigue, burnout, and even symptoms similar to PTSD. Vicarious trauma is not you being directly traumatised, but is built up over time, and has long been understood and supported within the therapy services. What we do see, is that it disproportionality impacts more empathic and caring people.
If you’re someone who is deeply empathetic, or if you see your work as a calling rather than just a job, you might be more at risk.
Common signs of vicarious trauma include:
Experiencing lingering feelings of anger, rage and sadness about patient's victimisation and discrimination
Becoming overly involved emotionally with clients or individuals in the community (to the detriment of self)
Experiencing bystander guilt, shame, feelings of self-doubt
Being preoccupied with thoughts of patients/clients outside of work time
Over identification with the patient or client (having horror and rescue fantasies)
Loss of hope, pessimism, cynicism
Distancing, numbing, detachment, cutting clients off, staying busy. Avoiding listening to client's story of traumatic experiences
Difficulty in maintaining professional boundaries with the client, such as overextending self (trying to do more than is in the role to help them).
So, what do our experts have to say about how they manage the risk of vicarious trauma?
Dr Tony Lloyd
My conversation with Tony was really interesting. For those that don’t know him, he was the CEO of the ADHD Foundation a very long time and has helped completely revolutionise the ADHD landscape and wider neurodiversity movement within the UK. Tony is also a trained therapist and has worked both individually with ADHDers as well as with wider systems. He’s been both a role model and a mentor in this space, and having recently retired, he’s been able to reflect on decades of experience on what it’s like to be an ADHD advocate.
Over the years, Tony has noticed a few things happening to professionals in this space:
Significant burnout of those wanting to help others, including some leaving the space forever
When people have been systematically failed by the systems meant to support them (such as the NHS, schools, and the council), there often follows feelings of desperation and hopelessness in the community where people are looking for support wherever they can find it. This is often projected onto other professionals who don’t work in these services, such as charities, support groups, and online advocates.
Consequently, when you have a huge social media following, there is a near constant flow of people having nowhere to go needing help, who may get angered when a charity or advocate does not have the resources or expertise to give that person the help they desperately need.
This constant stream of fear, trauma, and pain takes a significant toll on those on the other end of the phoneline/email which, if left unchecked, can cause significant long-term harm.
As the failure is often systemic, you are also often unable to actually give people what they need, which can be distressing due to your own feelings of hopelessness. Often, the third sector organisations and many advocacy groups are voluntary and user led by people who themselves are neurodivergent, have ongoing mental health difficulties, or have experienced trauma.
During our conversation, we spoke at length about how Tony has tried (and at times failed) to manage his exposure to other people’s pain in order to protect his own wellbeing. Tony often challenges the overarching difficulties of living within a commercially driven capitalistic world, finding solace in some aspects of spirituality which aim to reframe our expectations of what is important.
He describes having a network of social and emotional support, in which different people fulfil different roles. These included:
The spiritual friend who helps keep him rooted in his values and his behaviour congruent to his beliefs
The colleagues and friends who “get it”. The other advocates who understand the pressures of being in such a public support position.
His husband Colin (who is also an incredible advocate in the ADHD and education space), who has worked and made their vision a reality.
However, Tony also explored other ways in which we can keep ourselves safe which often were more in line with what I was taught throughout my nursing journey, such as:
“You have to tell yourself that you can only do so much, if you can honestly say I cannot work any harder than I am doing”. People cannot be expected to know about the aspects of your job which consume much of your energy, capacity, and time (which are often invisible). The endless meetings with other professionals, NHS commissioners, media outlets, and other advocates.
I often stayed very busy as a way of coping with the pressure and anxiety of everyone’s expectations, but I knew that staying busy has a half-life. (Perhaps one of my favourite quotes of the interview)
Be honest about the impact that you can have on an individual’s situation.
Consider where responsibility lies, as sometimes by being helpful we miss opportunities in which the person is able to develop responsibility for their own lives through self-empowerment. We “so called experts” are not experts at everything, and are often dealing with our own challenges, family worries, and demand for support from our colleagues and friends.
I think Tony’s last point is really important. As many therapists are told when they begin training, it is not “their job” to make people well. They are often facilitators in being able to help others to learn to help themselves by asking the right questions or developing a shared understanding of the problem. A therapist does not fix your problems, you do.
The evidence here is really clear, when someone is not engaged in a piece of therapeutic work, it will not be effective. So, although it might seem uncompassionate to put boundaries in place so as not to take responsibility for other people’s distress and situations, by failing to do this we might undermine that person’s ability to actually develop the skills and awareness required in which to resolve both this and future problems themselves. As we are often told in mental health nursing, we do not empower people. We support people to empower themselves.
Dr Henry Shelford
Like Dr Tony Lloyd, Dr Henry Shelford is a hugely influential figure in the current societal narrative around ADHD. Henry is the CEO of ADHDUK and has repeatedly been on television fighting for neurodivergent rights and causes. However, my interview with Henry brought to life the stark reality of the impact of advocacy even for those in very public positions.
When asked about whether or not Henry finds it difficult to manage the impact of vicarious trauma, his response was immediate and sombre.
“It’s actually affecting me quite seriously, it’s really hard and it’s taking its toll on me”.
When we explored this a little further, similar themes came up as in my conversation with Tony. Henry described how difficult it is to build an effective service to support ADHD communities as many supporters experience burnout and struggle to manage the constant demands and exposure to often highly traumatic subject matter. I’ve spoken with Henry on numerous occasions throughout the years, and he seems to always be fighting the advocacy battle on numerous different fronts, bouncing from idea to idea and always has a really exciting prospect up and coming.
Although he does feel like he’s not managing as well as he could be at the moment, Henry uses strategies such as limiting his input and exposure as much as realistically possible, such as not having a strong personal social media presence.
He also delivers a drop in every Friday, where people are able to explore their ADHD related experiences. Although this limitation is helpful as it may condense some of the exposure to a smaller timeframe, we did laugh as he explained how the last session (meant to be an hour long) ended up being two and a half. I often worry for those who seem to be being killed by their own kindness, as the constant demands of being an advocate wear you down in ways perhaps more insidious than many might have realised.
For instance, I really resonated with something Henry said towards the end of our interview as it has been a bit of my own experience as well. Henry had this to say:
“The hardest part is when you speak to people in positions of power, people who can REALLY make a difference. People who have influence to make changes. And they just don’t’ care or think ADHD is significant’. The disconnect from what they think and what you know to be people’s lived experience in the community…that’s hard”.
Personally, as I’ve grown in the neurodiversity community and been invited to events and conversations I previously unaware of, I can’t help agreeing with Henry’s conclusion. It is in the conversations with the budget holders, the policymakers, the people who can really shake up the world where you can get the most disheartened, because they have the ability to make a change but refuse to. Tony Lloyd echoed this sentiment. We all lamented about how the complete lack of legal requirement for ADHD training in professional courses such as teaching and nursing (a position I’ve been championing for a long time) feels completely at odds with what we see as necessary in these services.
The failure to adequately support and fund ADHD services for decades, and the conversations with decisionmakers refusing to acknowledge this… that’s what gets all three of us down.
As you can see, even those who have been working in this space for a long time (and have clinical training in manging transference and vicarious trauma), it is still impactful. I believe that the fact that this isn’t really discussed in online spaces needs to change, as it runs the risk of eroding the support that neurodivergent people so desperately need.
Some practical tips you can try today
If you're supporting neurodivergent people and want to protect your own wellbeing, consider:
Set clear emotional and practical boundaries – Be clear on what the limits of your role are. Therapists are often clear that they are not a crisis service, are you?
Engage in regular clinical or peer supervision – This can include support networks for advocates and mental health check-ins to discuss difficult time
Use reflective practice (journaling, peer discussions) to process what you hear
Consider engaging in a wellbeing or spiritual practice such as exercise or meditation
Take scheduled breaks and protect personal time – If you’re scrolling LinkedIn messages at 2am, is that helpful?
Watch for early signs of overwhelm or emotional numbing
A final word
Supporting neurodivergent people is meaningful, powerful, and sometimes life-changing work. But it can also be heavy. You can’t pour from an empty cup, and you shouldn’t have to. As Dr Tony Lloyd said “Being busy has a half-life”.
I received an email from Henry a month or so after our interview, and he said that the conversation alone as been really helpful in reappraising what he was doing…These conversations need to happen, they can change lives.
If you’d like to learn more about how to support your own mental health while working in these spaces, I’m available to deliver neurodiversity and mental health training and consultancy through 2025-26.
Good luck everyone…it’s tough.