ME/CFS Society of WA: Family, Carers & Friends

There are a number of factors which combine to make ME/CFS a very difficult disease to understand for those unaffected by it. In this environment of potential and often very apparent misunderstanding those affected by ME/CFS need strong support from family and friends as they struggle to cope with the many challenges and changes the disease may bring to their lives.

The key to understanding is knowledge. Read as much about the disease as possible. This website is a useful starting place but there are many others –the Canadian ME/CFS Guidelines foremost amongst them. Gaining knowledge leads to the removal of doubt, better understanding and a growing sense of empathy with those affected.

Reassure your friend, relative or partner of your love and support. A willingness to listen while remaining non-judgemental will help validate and acknowledge the seriousness of their situation. Ask how you can help –often it is the smallest of things that will be appreciated and show you care. If possible continue to enjoy activities together modifying those you are used to if necessary.

It may be natural for a healthy person to feel a little frustrated when faced with the need to make sacrifices for someone less able. This frustration can be magnified by the misunderstanding and uncertainty that surrounds ME/CFS. Knowledge and better understanding will help lessen these feelings. Bare in mind ME/CFS has the potential to cause disability equal to or even greater than many better understood chronic diseases.

Be wary of well intentioned comments that might be interpreted as insensitive. “I feel like that sometimes” and "Perhaps if you just tried a little harder" may betray a lack of understanding of the seriousness of your friend or partner's situation. Be empathetic “I’m sorry you feel like that” and encouraging “You are being very strong” whenever possible.

The severity and persistence of ME/CFS can be as daunting for family and friends as those it affects. It’s important therefore to recognize the impact that the disease may have on your own life. Congratulate yourself for caring and being there for someone who needs and appreciates your love and support. Take time for yourself and to recover if necessary.

Knowledge is the key to understanding, communication to showing you care.