Family and personal networks

For many people with ELCs, social interactions can be challenging due to stigma and misunderstanding from others, including medical professionals and loved ones. Despite these challenges, open communication about ELCs is essential, even though it can be difficult to explain.

Effective communication about ELCs is crucial for accessing necessary support, whether medical, financial, or otherwise. While it can be frustrating and stressful, sharing experiences can lead to better understanding and support.

ELCs can impact relationships, as individuals may feel like a burden and hesitate to seek help or explain their needs. However, expressing these feelings and setting boundaries can lead to more supportive and understanding relationships, reducing feelings of guilt and exhaustion.

A good network of family, friends, employers and community can make a real difference to someone with an energy limiting condition. Every-One have produced a podcast, hosted on Podbean, about Building your network.

More information is available on the following websites:

• Research: Impact of ME/CFS on the quality of life of people with ME/ CFS and their partners and family members - (ME Association)
• Why is communication important when you have ME∕CFS? - (NHS)
• Carers, family and friends (Action for ME)