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6. Coping with other people’s reactions and expectations (e.g. offers to help and updates on progress)

You may find the reactions of others draining.  It’s okay for you to put limits on your interaction with others. One way to do this is to ask people to send you messages of support via email or text message rather than by telephone. Then you can receive and respond to them when you have time and you feel up to it.

If you choose to return people’s calls but they don’t answer, leave a detailed message on their voicemail/answering machine so that they feel informed, but don’t need to ring you back.

You may find it helpful to appoint a ‘help coordinator’ who manages your offers of help and delegates tasks to appropriate individuals. It’s often easier for someone slightly removed from your situation to do this, particularly if, as typically happens, offers of help decline with time but your need for help doesn’t.

Consider delegating the task of keeping others up to date with the patient’s progress to one close, but more removed, contact person (e.g. a close friend, brother, sister). That way, if things get difficult or change quickly, you only have to speak to one person.

If you don’t want to/aren’t able to ask someone else to help keep everyone up to date, consider sending out text messages to multiple people

Often people want to help, but don’t know what to say or do, so don’t be afraid to be direct with people in letting them know how you would like them to treat you (and/or your children if relevant).