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".)

Comments

  1. from experience, may i add:
    - helpful if visitor wears plain, dark clothing - bright colors and bold patterns can be too much for the severe m.e. brain.

    - sits at a distance comfortable for the ill person - sitting too close can be too overpowering.

    - tries to gesticulate as little as possible - visual movement distracts the m.e. brain and can be too much to cope with

    -tries to talk calmly, softly , at breathing pace and just say a few words at a time - this gives the ill person the best chance of being able to tolerate the sound of your voice and to follow what is being said.

    - if the ill person starts jerking or has increasing trouble with speech or his/her voice becomes gravelly - the exertion of a visit has become too much

    - gives the ill person plenty of time to respond - if they are struggling to speak, do not interupt or try to second guess what the ill person is trying to say - this just confuses the m.e. brain and is overwhelming. - the m.e. brain needs quiet , no movement and space to respond.

    - be prepared to stop talking immediately if asked. - this is not personal but merely that the ill person cannot take further sound at that moment and needs to try to just process what is already there.

    - be prepared to leave immediately if asked - this is not a reflection on whether you are welcome but that the ill person cannot cope with a persons presence in the room or house.
    it's difficult to understand if you haven't experienced it, but your presence in another room away from the ill person can also be too much for the ill person to tolerate.

    - ask before hugging or touching the ill person - a kiss on the cheek can hurt, likewise a hug or a touch. the head can be especially sensitive. any touch on the skin can be painful.

    - don't try to 'make it better' - genuine , quiet acknowleedgement and acceptance of that person's + carer's reality or situation is helpful - don't feel you have to say anything 'helpful '- that you hang in there as a friend and that you care - can mean a great deal and is enough in itself.

    love to you and Linda.

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