With thanks to Joanna Griffin, a parent carer and Counselling Psychologist, for sharing her insights on trauma and growth as a parent carer. Helping us to recognise trauma, how to care for ourselves and how we might even grow, going forward.
You can read more in her new book Day by Day: Emotional Wellbeing in Parents of Disabled Children.
As parent carers we can experience additional stress at the best of times. Living through a pandemic has been a challenge for so many families. And the cost of living and world instability continue to cause distress and concern.
It has also highlighted the importance of taking active steps to maintain our emotional wellbeing – without guilt - on a daily basis.
For the last few years, I have been researching emotional wellbeing in parent carers and share what parents report as helpful in my new book, Day by Day: Emotional wellbeing in parents of disabled children.
Why parent carers experience trauma
In this article, I want to focus specifically on trauma, which is often part of a carers’ life but not always recognised as such.
Many of us will have been through a traumatic experience; witnessing the fragility of life or our loved ones experiencing invasive medical interventions.
"Each time my son has a seizure a little part of me dies" – Parent carer
Day to day cumulative traumas, such as ‘the battle’ for limited resources, can also take their toll. Even receiving a diagnosis for our child can be experienced as catastrophic for some, although others may find it a relief.
As carers, we may have higher levels of contact with medical, hospital and support staff than other people. Every experience of contact is potentially re-traumatising and the quality of the interaction can literally make or break someone’s day.
Parent carers can show ‘evidence of post-traumatic stress’, which is a common reaction to a shocking event, or events, in our lives. It only becomes a disorder when it continues over a longer period and affects our functioning.
It is suggested that ‘UK services are not designed to support traumatized parents, and health practice may serve to compound distress’ (Emerson, 2020).
What does trauma look like?
Traumatised individuals may experience symptoms, such as having an exaggerated startle response; intrusive thoughts; constant concern for their child’s health and, if the child has siblings, their health as well. Parents can go into hypervigilant mode and it can take time and patience to regain faith and trust in the world.
Where there is a continual re-traumatisation from new diagnoses, problems and difficulties, there is little time to catch up, take stock and re-ground ourselves for the next hurdle. For those children who are medically fragile there may be many hospital visits, close calls and having to prepare for bad news.
Some parent carers lose the sense of normalcy that other parents have because they have been through a traumatic time which triggers their alertness to danger. Furthermore, during times of trauma the support we need may be different from other times.
For example, people report feeling numb, excessively calm, zoning out or withdrawing. We may not be able to take in information or advice from others. Some parents told me in these moments they needed to be alone. But if people become isolated for too long this can also backfire and lead to further problems down the line.
1. Recognising trauma and asking for support
A good start is recognising that trauma is negatively impacting our life and then asking for the right support from those around us.
Parent carers report that understanding, compassion and empathy can make a big difference. Mind also has a helpful guide to supporting someone who is experiencing trauma.
“Knowing that someone really ‘gets’ that you may be exhausted, overwhelmed and struggling rather than being faced with judgement or dismissal can have a positive impact on our wellbeing.”
Sharing this article with your GP, social worker, school or even family, maybe a good starting point.
If those supporting us can work in a trauma-informed way, then it will lessen the negative impact of services. There are two main requisites:
The need for physical, psychological and emotional safety through trustworthiness and transparency
Opportunities to build a sense of control and empowerment through choice, collaboration and equality
2. Being assertive and saying what we need
Building on point one, we can try to introduce these factors into our life in small ways ourselves.
From sharing this article with those that support us, to build understanding. To asserting our wishes for how we want to be supported - in a way that suits our family.
When to contact your GP
At times though, we may need specific emotional support to help us through a difficult period.
If you are experiencing flashbacks, intense memories of a traumatic event, heightened startle reflex or hypervigilance which are affecting your overall mood, making you avoid certain places or things, affecting sleep or your concentration for more than at least one month after the event please talk to your GP about a referral for psychological support – such as Trauma Focused Cognitive Behaviour Therapy (TF-CBT) or Eye Movement Desensitisation and Reprocessing (EMDR).
What is post-traumatic growth?
Over time, though, most people manage to piece their life together again. Where there is trauma there can also be the potential for growth or positive gains.
Here are some of the gains parent carers in our community have reported:
1. Appreciation for the little things
Parents report having gained;
“a greater appreciation for little things, a new perspective and stronger bonds within the family.”
2. Greater wisdom, resourcefulness and empathy
There is also something that I refer to as a ‘wisdom’ that many parent carers express.
This involves a realisation that the world isn’t perfect, adversity is part of life and we have more resources and resilience in us than we ever thought possible.
“The skills and sense of mastery that we gain over time spillover in other areas of our life although we recognise that our life is forever changed. Our child changes us, our perspective and our assumptions.”
3. Better awareness and decision making
Some parents describe how the crises with their own child caused them to look at their own upbringing and views on society leading to a more informed understanding.
They learn to parent the child they have, rather than repeating patterns from their own childhood. This can lead to making better decisions about how to support their child, rather than trying to shoehorn them into a system that isn’t always designed for them.
4. Self-confidence and a thicker skin
As well as gaining an enhanced ability to cope with challenges some parents become less affected by criticism or judgement, and develop a thicker skin. This involves recognising our own expertise on our child and the skills we’ve learnt along the way.
5. Greater compassion
As well as embracing their own child’s difference, parents can develop greater tolerance and empathy more generally. In fact, some studies suggest that the more adversity someone has experienced, the more compassion they tend to feel and show to others in their life. In turn, empathy for others can have a positive impact on our own wellbeing, through heightened self-compassion and self-kindness.
How we can take care of ourselves
However, growth isn’t inevitable and can feel precarious at times. There are some things we can do to take care of ourselves and support ourselves through more challenging times:
Allowing ourselves time to make sense of traumatic experiences in our life can help.
Picturing wellbeing as a dynamic process that needs to be regularly topped up can ensure we maintain balance in our life.
For example, after a difficult hospital appointment, making time to connect with a good friend, engaging in a guided meditation or sitting down with a book and a cup of tea can allow us to gain equilibrium.
Services who offer compassionate, understanding and timely help will enable us to continue in our caring role.
This is an ongoing process. Being aware of our own emotions, including knowing in advance that something may be difficult, can ensure we create a protective cushion around ourselves at these times.
Remember that looking after our emotional wellbeing is a necessity, not a luxury, and it is important to take steps to support ourselves – without guilt – day by day.
‘I think that's what I've learnt really more and more over the years is that self-care, which many people think is kind of self-indulgent, but it's not, it’s like you're going to be a better mother, a better husband, a better wife, a better whatever, if you look after yourself.’ – Parent Carer
If you recognise trauma in your own situation, please reach out for support. For example, to a friend, family member or your GP.
And if you would like to connect with others who are in similar positions and "just get it", feel free to join our online cuppas for carers. It's a space where carers are welcome to ask all sorts of questions to do with caring, and we help each other out with our experiences and wisdom.
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About the Author
Joanna Griffin is a parent carer, Counselling Psychologist and founder of Affinity Hub which signposts to emotional support for parent carers. Her eldest son has cerebral palsy, a learning disability and autism.
Her book, 'Day by Day: Emotional wellbeing in parents of disabled children' is published by Free Association Books on 7th May. And can be ordered here.
Emerson, A. (2020) ‘Room of Gloom’: Reconceptualising Mothers of Children with Disabilities as Experiencing Trauma, Journal of Loss and Trauma, 25, 2, 124-140
Cadell, S. et al. (2014) Posttraumatic Growth in Parents Caring for a Child with a Life-Limiting Illness: A Structural Equation Model, American Journal of Orthopsychiatry, Vol. 84, No. 2, 123-133
Pit-ten Cate, I.M. (2003) Family Adjustment to Disability and Chronic illness in Children (Doctoral Dissertation, University of Southampton, UK), ProQuest, UMI Dissertations Publishing, 2003, C817308
Calhoun, L. & Tedeschi, R. (2010) Facilitating Posttraumatic Growth: A Clinician’s Guide, Routledge: Oxfordshire
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