This is an extract from Day by Day: Emotional Wellbeing in Parents of Disabled Children by Joanna Griffin.
In my research into the emotional wellbeing of parent carers the number of parents reporting that they felt constantly ‘on edge’ was deeply concerning. Furthermore, I’ve been running an online survey of common emotions experienced by parents of disabled children/children with disabilities over the last few years.
Without fail the most commonly reported emotion is stress, anxiety or worry.
Although they are often experienced as similar they have slightly different definitions. Stress is a natural response to something precarious or challenging – when external demands on us outweigh our resources. Becoming pre-occupied with problems and feeling unable to come up with satisfactory answers can lead to a ‘pile-up of demands’[1]. Anxiety is what we feel when we are worried, tense or afraid, particularly about something that may, or may not, happen in the future or that has an uncertain outcome. Sometimes the cause isn’t clear. In the short term these responses are normal and understandable but because of day-to-day pressures it can be hard to find time to make sense of things.
Over the longer term, though, stress and anxiety can be detrimental to your wellbeing – mental and physical. Symptoms can include headaches, raised heartbeat or breathing and grinding of teeth. Some studies report a greater risk of poor sleep, gastrointestinal problems and rates of infection[2].
There are different forms of anxiety diagnoses, dependent on how severe they are and what form they take: a generalised anxiety disorder (GAD) which involves worry about many things and not being able to stop worrying; panic attacks involve physical symptoms, for example feeling like you’re having a heart attack; obsessive compulsive disorder, where we engage in patterns of thoughts or behaviours to try and gain a sense of calm but find that the patterns can take over our lives; and social anxiety, which is based on the fear of judgement by other people. There is also post-traumatic stress disorder (which I consider further in my book, Day by Day: Emotional Wellbeing in Parents of Disabled Children).
Anxieties may lead to a ruminating about the ‘what ifs’ rather than staying with the present, being mindful and dealing with each moment as it comes. It can be helpful to consider the difference between reflection, where we need to go over something in order to process and make sense of it, and ruminative brooding where we get stuck[3]. We can become pre-occupied with the unanswerable or worry about things that have not happened, nor will not, but they take over our thoughts. This is our mind trying to come to terms with new and seemingly unfathomable information or circumstance. But anxiety can make it hard to think clearly.
Feeling ‘on edge’
I have been deeply concerned about the stress levels of many of the parent carers I have met over the years. Many describe a constant, low-grade general anxiety running throughout the day that makes them feel ‘on edge’.
‘I always feel very, very stressed out to be honest and always like I’m running on empty.’
It is understandable why parent carers feel this way. We are suddenly thrown into a confusing world of high demands (therapies, appointments, worries about the future) and low resources. I found it hard to accept being my son’s carer and therapist, as I just wanted to be his mum. Additional pressures, such as when a child displays behaviours that challenge towards the parent or siblings, greatly heighten stress levels at home.
Part of the carer worry is that you are never fully off duty. Even when a child is at school or being looked after by someone else you are waiting for the call – if they’re ill, had an accident or a seizure. And after school you may be on tenterhooks about what kind of day they’ve had, what mood they’re in and the impact this has on the family home. It can feel like you’re all walking on eggshells.
You need breathing space to try to digest and reflect on your situation and your responses. This will help you to not only cope with the day to day demands but also to move forward and develop other areas of your life.
What can help?
Most parents echo my own experience which is that, over time, they come to a place of acceptance, adjustment or adaptation. The stressors are not necessarily removed but our capacity to cope and respond in a healthier and more self-accepting way increases.
There are two over-arching themes in the ways in which you can manage your stress better: controlling external pressures, so that stressful situations don’t happen too often; and building up your ability to deal with the difficult things in life. They can sometimes work in tandem. There are some things that are out of our control; therefore we need to learn to manage our response to them. And there are some things we can influence for the better, either in the short or long term, into which it might be worth investing some time and effort.
Stress and mental health problems can feed off one another. Ask yourself – is there anything I can do about this? If the answer is yes – take action or make a plan. If no, let it go or decide to think about it at another time – such as scheduling in some ‘worry time’ or write it all down in a ‘brain dump’. Exercise and relaxation techniques can help as well as talking to friends and loved ones. If you need help understanding how to break this cycle you can talk to someone who is trained in helping unpick these tricky processes such as a counsellor or psychologist.
How we appraise (make sense of) the situation can also influence whether we see the environment as a threat, or something that we believe we can handle effectively. The meaning we bring to an event has a significant impact. Many parent carers talk about how they’ve learnt, through difficult circumstances, that they can cope with more than they thought they could. They’ve become more confident not only in dealing with day-to-day challenges, but also in their own ability to troubleshoot and problem-solve. To manage this though, we need space to reflect, to learn and to grow. If you have no spare capacity it’s going to lead to burnout. Try not to just plough onto the next problem, as we cannot think clearly when we’re constantly in crisis mode. Sometimes we throw ourselves into busyness or overload because we are avoiding negative emotions but there are more productive ways to cope with this imbalance.
At times we are overloaded because of the reality of being a special needs parent. Developing our assertiveness and ability to say no as well as finding trustworthy others to support us will help. At times the demands may not be possible, for example attempting to work and home school our children during the coronavirus lockdowns. Some things will not get done. That is ok; you are not superhuman.
For some individuals medication, such as anti-anxiety tablets, may be necessary to get the anxiety under control before you are able to tackle other strategies. Talk to your GP if you think this would be helpful. Bear in mind though that medication on its own is not always the answer without addressing some of the underlying issues, such as lack of balance, or the number of stresses in your life.
My next blog will look in more detail at strategies that help mitigate stress and how to develop your ‘Worry Controller’….
Tips on stress management are also available in previous blogs below and at www.affinityhub.uk.
[1] McCubbin, H.I. & Patterson, J. M. (1983) The Family Stress Process, Marriage and Family Review, 6, 1-2, 7-37
[2] Gallagher, S. and Whiteley, J. (2013) The association between stress and physical health in parents caring for children with intellectual disabilities is moderated by children’s challenging behaviours, Journal of Health Psychology, 18, 9, 1220–1231
[3] Joseph, S. (2013) What doesn’t kill us: a guide to overcoming adversity and moving forward. London: Piatkus