Being a parent of a disabled child keeps you extremely busy and changes the patterns of your lifestyle in ways that are hard to anticipate. You may not have the same access to your social circle as you used to, and many new parents say they feel socially isolated and lonely [1] [2].

“With a non-disabled child, you feel isolated, but with a disabled child that feeling is exacerbated. For the first two years of Nathan’s life, I had a lot to come to terms with, and at the same time I had to put an enormous amount of things into place like facilities and the professionals involved in Nathan’s care”.

A lot of the pressure of parenting comes from practical changes to your lifestyle – new working patterns, lack of sleep, more things to worry about, extra costs, and so on. Another reason you may feel more alone is that your couple relationship has to take a back seat while you adjust to your new circumstances [2].

Ordinarily, your partner might be the first person you’d go to if you’re feeling lonely – they may even be the person who stops you from feeling lonely in the first place. During the transition to parenthood, your best source of social support isn’t as available as they used to be, and you might be less available for them too.

This can be magnified when you have a disabled child, or when you are concerned your child may be disabled but don’t yet have a diagnosis. Some parents worry that it is their fault their child is disabled because of something that happened before the baby was conceived, or during pregnancy. It is important to remember that it is rarely anyone’s fault, but it is still emotionally very draining to see your child suffer or struggle, and you may not have much energy left for your partner. It can be equally difficult asking for help or admitting that you need it.

“I wasn’t brought up to ask – there’s enough guilt around having a disabled child anyway.”

“Any difficulties between my husband and I are exacerbated by the additional stress and time lost to caring for a disabled child.”

Another cause of loneliness in the early days of parenting is the pressure to live up to the standards that society sets for new parents. All parents face this to some extent but, when you’re dealing with the extra challenges of caring for your disabled child and figuring out what kind of additional support your child needs, the pressure can be overwhelming.

You might look at other parents and wonder if you’ll ever be able to have the same kinds of experiences as them, particularly around issues like breastfeeding, sleep and potty training. When everyone around you seems to be coping better than you are, it can leave you feeling isolated and alone [3].

It’s important to remember that there is help available. You can find information, advice and further help in these guides from our partners at Contact:

• Helping your child’s sleep
• Feeding and eating
• Potty and toilet training
  
  

Trying to access support can be very distressing. It can seem as though support is lacking and that the places parents usually go to meet are not accessible or even welcoming to you. This is when it’s particularly important to find other parents of disabled children you can talk to. Sharing practical solutions to shared experiences is a valuable source of support that many parents get from talking to others who’ve been there too.

“Her condition has thrown us into a world that we never knew existed, we had to adjust. Me and my partner are forced into these new experiences, and we didn’t know how to talk about it with each other. I think that parents who don’t have a disabled children find it hard to relate to us and they don’t understand what we’ve been through.”

Look on your local authority website to find out if there are any support groups near you – these can be a lifeline, and many parents talk about an overwhelming sense of relief at finding other parents like them. Getting in touch with other parents can also put you in touch with local support you may not know about. For example, you may be entitled to a short break from your caring role, which can give you and your partner space to be with each other and reconnect – this can be vital when you’re busy caring and fighting for support.

“Taking time to be with yourself and your partner can re-establish relationships that are buried under doctors’ appointments, being told what they can’t do, and hopes and disappointments of life.”

While feelings of loneliness can be very difficult to deal with as they’re happening, it’s often a temporary state [3]. It’s important to get support in place, but it’s also worth reminding yourself that this too shall pass.

As a couple, try to be sensitive to each other’s needs. You’re both going through a huge change and dealing with news and practicalities that you haven’t had a chance to plan for, but your experience of these things may not be the same as each other’s.  

Get together with your partner and talk about your experiences of parenting. Be honest about the disappointments and acknowledge how difficult the transition to parenthood can be. Opening up about the things you’re most worried about, including feeling lonely, will make it easier for your partner to understand what kind of support you need.

Your relationship relies on each of you knowing how the other is doing, which means taking time to talk about thoughts, feelings, hopes, concerns, and needs. Each of you needs to know the other has heard them. That means really listening to each other – listening to the words and understanding the feelings that underlie them.

When your partner shares their feelings with you, don’t judge them – listen and try to understand. Recognise your differences. Try not to make assumptions about what your partner is thinking and be as open with your partner as you can be. Look at where you might be able to make changes that might make things better. These conversations can help you feel closer as a couple, making parenting feel more like a shared experience and reducing the sense of loneliness felt by many new parents [3].

“Neither my husband nor I can imagine life without the other – neither of us could cope with the children without the other’s help. There is a bond between us that can never be shared by anyone else.”

Another reason new parents can feel socially isolated is the sudden change in social circles [4]. When you become a parent, your life patterns change completely, and you may find it harder to spend time with friends, particularly as a couple. When your friends do invite you out, you may have to decline, or one of you may attend as a representative while the other stays at home with the baby.

Try to use this time as a chance to connect with other parents in your local area. As you familiarise yourself with your child’s care team and other local services, you may find yourselves spending time with people in similar situations to your own. These new social connections can become invaluable sources of practical and emotional support. While clinical and therapeutic support is vital, there’s nothing quite like getting together for a chat with people who really understand you [4].

[1] AXA Healthcare (2015). Social isolation putting first time mums at risk. Available at: https://www.axappphealthcare.co.uk/health-information/womens-health/social-isolation-putting-new-mums-at-risk/

[2] Keizer, R., Dykstra, P., Poortman, A., & Kaslow, Nadine J. (2010). The Transition to Parenthood and Well-Being: The Impact of Partner Status and Work Hour Transitions. Journal of Family Psychology, 24(4), 429-438.

[3] Lee, K., Vasileiou, K., & Barnett, J. (2016). ‘Lonely within the mother’: An exploratory study of first-time mothers’ experiences of loneliness. Journal of Health Psychology, 135910531772345.

[4] Toombs, A. L., Morrissey, K., Simpson, E., Gray, C. M., Vines, J., Balaam. (2018).  Supporting the complex Social Lives of New Parents. Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems, Paper no. 420. Available at: https://dl.acm.org/citation.cfm?id=3173994