Many people don’t see themselves as carers, they see themselves as parents, partners, children, family or friends. Being a carer for someone living with ME/CFS is a fulfilling yet challenging experience. A diagnosis of ME/CFS can raise many questions, some of which do not have simple answers. There is often a lot of information to absorb, and advice available from many different sources, meaning at times it can be overwhelming. 

This webpage and the linked factsheets have been created to support you in your caring journey. If you have questions or require additional support, please contact our InfoLine team on 1800 865 321 or via email to: [email protected] 

ME/CFS explained for Carers

This factsheet provides you with information to help you understand the symptoms people with ME/CFS experience and how they might effect their ability to participate in everyday life. It will also provide guidance on the available supports and some practical steps to help you manage.

Topics covered:

  • Managing symptoms is key
  • Symptoms
  • Where to start?
  • Looking after yourself

LINK

Advocacy for Carers

As a carer of someone living with ME/CFS there may be times when you are called upon to provide support through advocacy. This could be with healthcare professionals, service providers, workplaces or even within your family or friendship circle.

This factsheet has been designed to support you when taking on the role of advocate to best support your person living with ME/CFS to make sure they receive fair and equitable treatment.

Topics covered: 

  • Taking a person-centred care approach
  • Understanding the rights of the person you care for
  • Conversation starters to better understand the wishes of the person you care for
  • How to advocate for someone you care for with boundaries and respect
  • Building a successful partnership with professionals
  • How to get support and help with advocacy

LINK

Effective Communication Strategies for Carers

Building a successful caring partnership relies on clear and frequent communication to understand the needs and boundaries of both the person you care for and yourself.

This factsheet has been designed to support carers to better understand their own communication styles as well as that of the person they care for, to support a strong caring relationship.

Topics covered: 

  • Understanding communication styles
  • Build strong caring relationships through positive communication 
  • Setting boundaries 
  • Building a successful caring partnership

LINK

Ensuring Autonomy, Dignity and Independence 

Your role as a carer of someone living with ME/CFS has no doubt changed over time. As you continue to learn more about the needs and preferences of your person with ME/CFS, the importance of honouring their autonomy, dignity and independence has become an important consideration for you. 

This factsheet has been designed to support you to talk with your person about how to maintain or increase their autonomy, dignity and independence.  

Topics covered:

  • Defining key terms
  • Talking with your person about what these terms mean for them
  • Autonomy, dignity and independence in action
  • Enhancing resilience
  • Setting goals, priorities, and personal boundaries
  • Validating negative experiences and moving forward

LINK

Self-care for Carers

Since becoming a carer of a person with ME/CFS, you may have made some small or big changes in your life. You may have had to change family priorities, reduce or stop work, with your life may be moving in a different direction then previously imagined.

Self-care is an important part of life but can often be the first thing we stop when life gets busy or priorities change. Finding a few minutes a day to focus on activities that support you mentally, physically, and emotionally will place you in a better space to help others.

This factsheet has been designed to support you in caring for yourself. 

Topics covered: 

  • Looking after yourself
  • Self-care planning 
  • Self-care plan template
  • Seeking extra support 
  • Helpful links

LINK

Connect with other ME/CFS Carers

You are not alone, all over Australia there are carers of people living with ME/CFS who share the same experiences as you. There are many ways to connect, through online peer support groups or through our national online forum. Learn more through the links below.

  • Online Community Groups
  • Online Community Forum

Carer Gateway

Carer Gateway is an Australian Government initiative that delivers new, improved and expanded services to carers across Australia. Through the Gateway you can get the practical support and advice that you need including information, counselling, peer support and respite care.

Visit www.carergateway.gov.au or call 1800 422 737

Helpful links

This information has been complied with the support of the Victorian Government.