Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.
Caring for a child with a rare genetic condition, disability and/or chronic illness can be rewarding and challenging at the same time. As a SWAN parent or carer, you might feel overwhelming pride, love, anxiety and fatigue all at the same time. You are not alone.
Carers Australia is now conducting an annual Carer Wellbeing Survey. The 2021 survey found that 35% of Australian carers often felt lonely and 50% felt that caring had a negative impact on their health. You can read more about the survey findings on their website.
Care burnout is a real thing. Burnout involves feelings of mental and/or physical exhaustion. HelpGuide lists several symptoms, including feeling irritable, hopeless or having a chronic cold. It is difficult to look after others when your cup is half full. Please take the time to do something for yourself each day, no matter how small. If a carer burns out, they have limited capacity to help anyone. Here are a number of self-care resources, strategies and tips:
Everyone has their own way of unwinding and enjoying themselves. Meditation is not for everyone – what do you find relaxing? As a carer, it is hard to set time aside for yourself. Consider scheduling this time in, just as you would schedule your child’s therapy appointments. If you’re not sure where to start, here are some ideas to get you thinking:
It’s important to be flexible with self-care. Self-care is about addressing your personal needs rather than subscribing to a general set of standards. If you have had a physically taxing day, you may wish to prioritise rest over exercise, for example.