Can we talk about loneliness, please?

For mums & carers raising children with disabilities, this path can often feel isolating and lonely. As we busily make sure our child’s needs are met with therapies, educational assistance, building skills in social groups, and the never-ending list that comes with parenting a child with a disability, the mental load required of us is overwhelmingly hectic.

It’s not surprising that we are likely to lose ourselves along the way. We don’t get 5 minutes to ourselves, yet we find ourselves with people who rarely understand our unique challenges.

We asked some of our mamas their thoughts on loneliness and here are a few of their honest and raw responses.

I used to feel lonely all the time but things have changed and after 15 years of feeling like that, it’s good to know I’m not alone. The reality is though that even though we know we aren’t really alone, there are very few who truly know how things are. For those who know fear and heartbreak with our children, we also understand the little things are actually massive and fill our hearts with joy.

I was lonely when I was down in Sydney but when I moved to the Gold Coast 6 years ago I felt so much better and better lifestyle! Friends that understand me and love me for me.

To be honest some days are harder than others, sometimes it one step in front of the other. Reaching out can be a scary challenging time, I admit it’s not easy to talk to someone.

I am almost never by myself… but often feel lonely or alone. Not always with sadness, but a constant nonetheless.

When kids were younger yes, felt all the isolated, alone and lonely feelings. As my daughter’s diagnosis progressed into being one of the rare/unknown categories I felt like I didn’t fit in anywhere in the disability world either. That was a very lonely place. I had 2 NT (neurotypical) boys as well, so it was hard finding my place, if that makes sense? I have a small number of amazing friends who stuck with me during the worst years. Once I learnt how to ask for help and to let people in I realised how lucky I was to have these crazy people in my life! My family is fairly close, and as we’ve all grown up we have become friends too. I hang out with my sister a lot and I am a total introvert in social situations nowadays, so I’ve become comfortable with my own company.

Lonely & often drowning.

For me, loneliness and isolation seem to be accompanied by how people responded (or didn’t!) to learning about my child’s disabilities. The fact that at a time when all the other mums were talking about the same kinds of things and I just couldn’t relate meant that I stopped seeing them because it was too hard or because I was tired of being told ‘have you tried’ or ‘can’t you just’. As she has gotten older, and I’ve understood her disability more, and the good people have stuck around, I find it a lot less lonely. But somehow not less isolating.

I have an amazing support worker now. She makes me feel so valued and I’m not lonely anymore, but it was rough for a while.

1. The unspoken isolation

Being a special needs mum can be an isolating experience because the challenges faced are not always understood by others. Friends and family may offer sympathy, but true empathy is hard to come by unless they’ve walked a similar path. The daily battles, therapy sessions, and medical appointments can create a divide between the world of special needs parenting and the experiences of others.

2. Overwhelming responsibilities

The demands of caring for a child with special needs can be all-encompassing. These responsibilities can leave little time for socialising or pursuing our own personal interests, which can contribute to feelings of isolation. The constant juggling of therapy schedules, medical interventions, and daily routines can leave special needs mums feeling emotionally drained and socially disconnected.

3. The fear of being judged

The fear of judgment from others can be a significant barrier to forming connections. Special needs mums may worry that they will be criticised or misunderstood by those who don’t grasp the intricacies of their child’s condition. This fear can lead to self-imposed isolation, as mums may withdraw to avoid potential judgment.

4. Loss of identity

The role of being a special needs mum can sometimes overshadow our personal identity. It’s easy to lose sight of our own needs and interests while focusing on the needs of our child. This can create a sense of loneliness as mums may feel disconnected from their own passions and sense of self.

5. Coping Strategies

While loneliness is very much a challenging aspect, there are strategies that can help:

  • Seek support groups: Connecting with other special needs mums through support groups or online communities can be incredibly helpful. These groups provide a safe space to share experiences, seek advice, and find understanding.
  • Talk about your feelings: Open communication with friends and family can bridge the gap of understanding. Sharing your thoughts and emotions with loved ones can help them provide better support.
  • Self-care: We know, we know it’s hard to do; however prioritising self-care and making time for activities that bring you joy will help your own well-being and is essential to being a strong and supportive parent.
  • Professional help: Don’t hesitate to seek professional support, such as counselling or therapy, to address feelings of loneliness and stress. There are different strategies to assist in prolonged stress situations (for example medical intervention) by a trusted health professional.

6. Embracing YOUR strength within

It’s important to recognise that being a special needs mum is a journey filled with moments of profound love, resilience, and strength. While loneliness can be a part of that journey, it doesn’t define it. Special needs mums are remarkable individuals who overcome challenges with unwavering love and dedication.

It is important to take note of all that you do, and show yourself some self-compassion.

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