In addition to the Covid pandemic, there is another pandemic that has gained greater prominence lately; that of loneliness. It is therefore pertinent that this year’s Mental Health Awareness Week focuses on loneliness, acknowledging that Covid, lockdowns and social distancing have all highlighted just how important connection to others is.

Loneliness has been defined as: ‘a subjective and unwelcome feeling which results from a mismatch in the quality and quantity of social relationships we have and those that we desire’.

Everyone will feel lonely at some time in their life – it is a very normal human emotion in certain situations. It is only a problem when it persists over a longer period of time or starts to have a negative effect on your life.

Mental and physical health

Long term loneliness can pose serious threats to our mental and physical health. As well as increased depression and anxiety, it is related to poorer sleep, higher blood pressure, cognitive decline and weakened immunity. Connecting to others can literally be a life saver.

When we become depressed we are more likely to withdraw from others, just when we most need social connection, thereby creating a vicious circle. People who feel lonely are more likely to notice negatives and perceive judgements where they were not intended. This suggests that if we do not use our ‘social muscles’ they can become error-prone and out of shape.

Parent carers

Much of the research on loneliness has tended to focus on older people. However, social isolation is commonly reported by parents of disabled children. It is therefore unsurprising that even before Covid a survey by Contact suggested that ‘72% of families with disabled children experience mental ill health such as anxiety, depression or breakdown due to isolation’ .

Some parent carers talk about losing friends who fail to ‘get’ their life or their child. If family, or others close to us, don’t provide the quality of relationship we need this can be upsetting.

“One of the hardest things is lack of family support… it’s quite isolating from that perspective” – Parent Carer.

Covid has exacerbated existing challenges. A recent report by the Disabled Children’s Partnership states that: ‘Disabled children and their families continue to be severely isolated. Despite household mixing allowed during the Christmas period, almost half (49%) of disabled children and their siblings (46%) did not see a friend online or in person over the festive period. The proportion of parents socially isolated has increased over the last six months, with 7 in 10 parents socially isolated.’

Loneliness v. solitude

It’s important to emphasise the difference between loneliness and solitude. We can relish time on our own, particularly as parents, where space to be in our own thoughts can be helpful and reinvigorating. However, loneliness is different from time we have chosen to be alone. And it is possible to be lonely even when surrounded by people.

“I was in a parenting group with all these other toddlers and mothers, but mine was the only one that didn’t show any interest in the other children. I felt so alone” – Parent Carer.

Shame

An added layer of difficulty is that people often feel ashamed of being lonely or even talking about it which of course then layers the sense of isolation even further.

What can help parent carers?

Awareness

Public campaigns to raise awareness can help people talk about their own loneliness without shame: you are not alone.
Identifying and naming the feeling, ‘I’m lonely’, can make it easier to put into place some strategies to help.

Stop a downward spiral and try to start an upward one

When we become lonely it may cause us to withdraw, making it harder to identify any positives of connecting with others and escalating anxieties.

It is important to notice your own emotions and catch yourself if you are starting to withdraw from activities or disconnecting from others. Being aware that this can be an unhelpful downward spiral and trying to turn it into an upward spiral instead can help. This includes making the effort to engage with other people and taking part in activities that you used to do. It may be that getting out, even when you don’t feel like it, can help lift your mood.

“If I’d just stayed at home, it would just overwhelm me. I needed to get out of the house, see other people, have something to focus on” – Parent Carer.

If this seems overwhelming at first start with simple, small steps to do something that you really want to do.

Talk to someone

Speaking to others, whether it’s a friend, family member or neighbour can help. This can include a quick chat with your neighbour in the morning when putting the bins out as well as more in-depth connections over a coffee or dinner.

Getting to know people over the longer term is also protective of wellbeing. This is particularly important when your child grows and other support networks change. For example, when there are fewer opportunities to socialise at the school gates or teenage behaviours emerge that make socialising more difficult. Having a wide community of support (whether that’s family, friends or special needs network) that truly know and accept you and your family can help protect against isolation.

There are also support lines (Contact, Mencap, National Autistic Society, Challenging Behaviour Foundation and others) often run by family carers themselves. Research suggests that finding authentic peer support can help counter loneliness and connecting with others ‘in the same boat’ is a key factor in our latest online group programme for family carers, called Positive Family Connections.

Social Media

For many, connecting to other parent carers on social media becomes a lifeline, particularly when leaving the house is difficult. Some organisations provide closed Facebook groups or online forums which can be helpful for emotional support as well as practical advice.

A word of warning though, at times comparison to others on social media can lead to unrealistic expectations. Remember, that people often only show the best side of their lives, and leave out the difficulties, messiness and challenges that all humans face. If you are finding comparisons on social media hard there are some tips on Mind.

Psychological support

If you think professional support would help, you may be able to access counselling through your GP. For a list of organisations and private counsellors (there will be a charge for the latter) you can find a list of those with specialist expertise at Affinity Hub.

What can society do to help?

When society is inclusive and accessible it can provide parent carers with a sense of belonging for their family.
For example, inclusive playgroups, accessible playgrounds and changing places toilets all help families with children with neurodevelopmental disorders feel part of society. And being part of a community is a key protective factor against loneliness.

Other information about linking to groups can be found here:

• Mind have a useful list of support on different aspects of caring
• There is also support at Loneliness Directory – The Jo Cox Foundation
• Social prescribing is becoming increasingly used in the NHS
• Join befriending schemes or find out what is going on near you
• Further reading: The Psychology of Loneliness Final Report

References:

Perlman, D., & Peplau, L. A. (1982). Theoretical approaches to loneliness. Loneliness: A sourcebook of current theory, research and therapy, 123-134
forgotten_isolation_report.pdf (contact.org.uk)
#LeftInLockdown – Pandemic Campaign and Research Overview – Disabled Children’s Partnership (disabledchildrenspartnership.org.uk)

Joanna Griffin  is a parent carer, psychologist and researcher at the University of Warwick.