What makes a good visitor ?

It can be extremely difficult and challenging to reach out to people with Severe ME whose reality is virtually unimaginable.

The person is likely to experience complex cognitive dysfunction, blocking every level of communication, making it extremely hard for them to explain , articulate and identify, from the inside, the profound level of suffering they endure : how unimaginably ill they are in every moment and how massively at risk they are from being harmed through unawareness or ignorance.

The effort of speaking, if the person is able to speak, can be too much possibly lead to a post-exertional crisis.

The pain and acute physical discomfort they suffer, makes it difficult for them to concentrate and deal with complex interactions with other people, especially as the interaction itself will most likely increase their pain even more.

It is essential that anyone trying to communicate with a person with very severe ME understands the way the person communicates, what they can tolerate and how little energy they have and not ignore or forget the persons reality.

What makes a good visitor ?

Someone who :

  • Is sound, light, colour, chemical/ perfume aware.
  • Understand the physical limitations placed upon the person by their illness.
  • Only comes at agreed times.
  • Is willing to stop talking, wait or leave as necessary.
  • Will only brings gifts that are suitable taking into account complex hypersensitivities.
  • Appreciates carer stresses and needs.
  • Does not expect to be waited on.
  • Does not make unnecessary demands .
  • Understands or is willing to learn how to best communicate.
  • Does not misinterpret or misjudge the person.

(This is an extract from my forthcoming book : "Notes for Carers".)

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