Can we talk about loneliness?

For mums and carers raising children with disability, loneliness can be an uncomfortable part of the parenting journey. It isn’t always obvious from the outside. We can be surrounded by people all day, ferrying children to school, therapy appointments, medical appointments and activities, talking to teachers, support workers and other parents. Our calendars are full. Our lives are full.

And yet, somehow, we can still feel completely alone.

There is a particular kind of loneliness that comes from living in a world that doesn’t always understand your reality. The things that occupy your mind, the decisions you have to make, the worries you carry and the sheer mental load of caring for a child with disability can be difficult to explain to someone who hasn’t lived it.

Sometimes it is the small things that build up and really get to you. The invitation you stop accepting because getting out of the house is too hard. The conversation with other parents that leaves you feeling as though you are living on an entirely different planet. The well-meaning suggestion to try something you have already tried six times. Or the feeling that everyone else seems to understand the rules of parenting, while you are constantly making them up as you go.

When a child is diagnosed with disability, friendships and social connections can change too. Other parents may be talking about milestones, school, sport or weekend plans while your attention is somewhere else entirely. You may find yourself explaining your child, defending your choices or worrying about how others will respond to their behaviour or needs.

Sometimes it becomes easier simply to stop going out and getting involved in the social circles you used to frequent.

That withdrawal can be protective. If social situations are exhausting, unpredictable or leave you feeling judged, avoiding them can seem like the simplest option. But over time, it can also make the world smaller.

There can be a fear of being judged, too. Parents may worry about what other people think when their child is distressed in public, behaves unexpectedly or needs more support than other children. Even when nobody has said anything, that anticipation of judgement can be enough to make you retreat.

And then there is the exhaustion.

Caring for a child with disability can involve a seemingly endless stream of appointments, paperwork, therapy, school meetings, assessments, funding decisions and everyday care. There is always something to organise, research, remember or advocate for. Finding time for friendships, hobbies or simply sitting quietly with a cup of tea can feel wildly ambitious.

When your child’s needs take up so much of your time and attention, it can become surprisingly easy to lose track of yourself.

You become the person who knows which therapy is on Tuesday, which foods are safe, what the school needs to know, which form has to be completed and what helps when things go pear-shaped. You become the organiser, advocate, carer and problem-solver.

Somewhere in there, you can lose sight of the person you were before all those roles became necessary.

For some parents, the loneliness changes as their child gets older. Understanding your child’s disability can bring greater confidence. Friends and family may learn alongside you. The people who stay can become an incredibly important part of your life. You may become better at asking for help, too, which can make an enormous difference.

But loneliness and isolation are not necessarily the same thing, and one can remain even when the other begins to lift.

You can have people around you and still feel that very few people truly understand what your life involves.

Finding those people can take time. Sometimes they are other parents who simply get it. Sometimes they are friends or family members who have learned how to listen without trying to fix everything. Sometimes they are support workers, teachers, therapists or other people who understand your child and, importantly, understand you.

Online communities can provide connection too, particularly when getting out of the house is difficult. There can be something powerful about being able to say, “This is happening in our house too,” and knowing you don’t have to provide a lengthy explanation.

It is also worth saying that asking for help can be hard. Many parents become so accustomed to managing everything themselves that admitting they are struggling can feel like another task they have somehow failed at.

It isn’t.

Loneliness is not a sign that you are doing something wrong, and needing connection does not make you any less capable. Sometimes the most useful thing we can do is let someone else in, even when it feels uncomfortable at first.

That might mean accepting an offer of practical help. It might mean telling a friend that you are having a terrible week rather than automatically saying you’re fine. It might mean finding a community where you don’t have to explain why an apparently tiny thing has completely wiped you out.

And sometimes it may mean talking to a professional. Long periods of stress, isolation and emotional exhaustion can take a real toll, and there is no prize for struggling silently.

Most importantly, it can help to remember that there is a whole person underneath the role of parent and carer.

Your child may need you enormously. But you still need friendship, laughter, rest, interests, conversation and time when nobody is asking you for anything.

Those things are not selfish extras. They are part of having a life.

Parenting a child with disability can be extraordinarily demanding, but it can also bring relationships, experiences and moments of connection that are difficult to find anywhere else. The loneliness is real, but so is the possibility of finding people who understand, asking for the help you need and gradually making space for yourself again.

And perhaps that is where we need to start: by talking about loneliness without treating it as something we should simply be better at coping with.

Sometimes, we just need someone to sit beside us and say, “I get it.”