PTSD recovery is a community project

‘Recovery’ is a word you may have heard before when mental health is being discussed. I’ve seen it bouncing around Instagram and TikTok a lot lately.

So - what is recovery, why does it matter, and why does it need to happen in the context of community?

Health NSW discuss what recovery is and isn’t. I like their definition and think it’s pretty spot on. They write:

For people living with mental health conditions recovery is about the person’s whole life, not their illness or symptoms. It is personal and will mean different things to different people. Recovery, and a recovery oriented approach, focus on someone getting back control of their life, which may or may not include living with symptoms.

For the person experiencing PTSD, it can be really frightening, frustrating, and episodes can feel like setbacks.

Hypervigilance, a symptom of PTSD, can be particularly gnarly shit. It attacks the foundation of intimacy in our bonds: trust and emotional safety. Noise sensitivity, nightmares, memory issues…these also can make daily life extremely difficult.

Flares can be really, really hard to bounce back from, and not everyone understands how profoundly disabling and involuntary it can be. This, in itself, can be a source of deep pain for the person with PTSD.

There is often little compassion for the sufferer. I’ve been on both sides of this fence, and so intimately understand what it is like to be the person in the grip of an episode, and the person close to them struggling to support them, and feeling confused.

Basically, PTSD sucks for absolutely everyone. The way it disrupts our human bonds is devastating.

I want to distinguish here that an episode is different to everyday symptom experiences. I experience milder, low-key hypervigilance most days, which shows up as tension and anxiety and reactivity to my environment. I am quite sensitive to worry, to noise, to light and movement in my periphery, and to feeling stressed about social dynamics. While yes, I am Autistic, my noise sensitivity is far more severe now than it may otherwise have been with less traumatic experiences over time.

Dr Jess Taylor, a psychologist out of the UK, writes a lot about trauma recovery. She explores in her work the idea that in many ways, hypervigilance and this state of ‘alert’ is actually a fairly rational response to traumatic events. Our brains are trying to keep us safe.

I have felt extremely grateful the last few years for having a year of DBT group under my belt. The coping and accountability skills I learned in Dialectical Behaviour Therapy have helped me keep going, and not drown in the shame every time things get hard. Every day I get up, stick to my recovery plan, and keep turning my mind away from shame and towards accountability - and yes, people with PTSD do need to be accountable for their recovery.

This is a very unpopular opinion with some in the mental health community, but it’s a hill I will gladly die on.

I’ve experienced people who refuse to take accountability for their mental health, despite being offered tools, and having oodles of resources. This has really harmed me (and my child), and so I am very motivated to not be like that.

I know what happens when people won’t engage in taking responsibility for themselves. Inevitably, more trauma.

I know that I will likely be in a state of recovery my whole life, and I need my community on this journey. I can’t do this alone, and I’m not doing it alone. I’ve had friends and family and support workers and health practitioners holding me tight and close, for years.

What bothers me is that not everyone has this.

When someone has an episode or flare, it can feel frightening for the people around the person too. I get that. Many people simply do not have the tools or knowledge to understand what is happening - they have no frame of reference, no action plan, and no capacity to respond well.

What this means is that people frequently and quickly end up isolated. The symptoms of PTSD can be so confounding, scary and intense that people ‘go away’, leaving the sufferer alone.

This can directly contribute to suicide risk. We know that risk for PTSD in veterans is high - one study in 2014 found it fell somewhere between 58 percent and 90 percent. While I’m not sure what the risk would be like for victim survivors of abuse and violence in the community, I wager it would be similar. I welcome more information on this if anyone cares to send it to me!

In general, social isolation is a suicide risk for all people. Dr Chloe Motillon-Toudic et al. found in 2022 that suicide risk was greatly increased by social isolation. The authors also found that social support was greatly protective against suicide risk.

Episodic mental health, or psychosocial Disability can feel scary, yes. However, it doesn’t have to feel this way. Clearly, there’s huge benefits if it doesn’t, and we are able to remain in connection with our loved ones.

The Blue Knot Foundation have been leaders in Australia in promoting the message that recovery from trauma happens best in relationship and in connection. This is so important, and I am deeply grateful to them for their work. They say:

Positive experiences in our relationships can help us heal just as negative experiences can cause us emotional and mental distress. It is important to acknowledge the capacity of positive interactions, even in routine interactions, to be soothing and validating. This applies to all of us, and especially to people with trauma histories. Support is crucial to the process of recovery. Positive experiences of relationships are central to trauma recovery. They are also important to general well-being.

So what makes the difference? How do we get there?

We get there by educating, equipping and resourcing the whole community. We get there by flooding community networks with money, time, respite, and support so everyone can grow. As boring as I know I can be on this topic, this means the radically funding the NDIS, increasing State based funding for mental health, and funding the development of robust peer support in the community.

We don’t need more awareness campaigns about mental health. We need people to be able to afford to: take time off work, access support workers, rest when they need to (both sufferers AND carers) and access trauma informed education. We need help to cover lost wages, rent, and food. We need access to therapy that is evidence based, effective and affordable.

It’s always going to come down to spending on the things that matter and letting those with lived experience and those with expert knowledge in psychosocial Disability, lead.

If we and our loved ones are well supported, educated, and ready with tools and skills to respond, everyone gets through it with more ease and patience. Responding to someone who is experiencing severe symptoms is hard, but it can be made easier. And in this way, we keep people alive, and not just alive - we help them recover and remain as well as possible, with enjoyable lives.

PTSD is not a character flaw. It is a complex and painful response to severe traumatic experiences, and I wouldn’t wish it on anyone. There is a tension between the need to take accountability for recovery, and the need to take a structural view.

The individual can’t be accountable or recover alone. They can only do it in the context of their people.

I am so grateful for mine.