WHAT DOES BEING PRESENT ACTUALLY MEAN FOR PEOPLE WITH COMPLEX SYMPTOM EXPERIENCE AND HYPERSENSITIVITY?

It is not simple - or even reasonable.
It so much more than just being in the room with the person. To be in the room without awareness of what it means to be truly present, can be catastrophic and deteriorative - the very opposite, possibly, of your intention.
In order to be truly present you need to:
Focus on the person
Understand the symptoms that they are experiencing and how they affect the person directly - what level of suffering they might be experiencing which may get in the way of connecting and two way interaction.
Recognise the signs of distress, deterioration, increased agony and any likely triggers for worsening their experience.
Be aware of your own inner energy and external non-verbal communication and body language.
If you are irritated, disinterested, distracted, unmotivated, feeling critical, worried, sad or negative yourself, for whatever reason, unfortunately the person is likely to sense this and feel exhausted, irritated, negated, tormented, even and may be deteriorated by it.
Be patient and still in yourself, especially if the person has severe movement or noise sensitivity. Even the slightest, most seemingly insignificant noise or sudden even subtle movement, can do unimaginable harm.
Be quiet, but make sure that quiet is peaceful, not agitated by your own energy.
Wait for the right moment.
If you remain in the room it will mean standing or sitting in silence, noticing how the person is, being ready to help at the right moment.
It does not mean to read a book or play a video game or twiddle your fingers, tap your foot impatiently or unawarely or write emails, look at interesting websites, use an app; unless the person has said they can specifically tolerate such things and it is ok to do so.
Know how and when to respond without being told. Know how important it is to be ready to help, to be able to do things in the right way
Look for the right moment to communicate or move.
All this is just the minimum required for anyone wanting to provide sensitive aware care.
You see, if you can achieve or convey a sense of harmony, peace and being together, even in the most desperate moments, the outcome can be one of flow and togetherness through the tremendous suffering caused by the illness.
The sense of utter total isolation can be broken and the relationship can only be strengthened by such congruence and compassion.
Bring truly present then, is an affirming experience that conveys a message to the person that you know how to be with them, that you are aware of how difficult it is for them to tolerate your presence.
Without it disconnection can occur and the whole experience of meeting need and the flow that comes from being together in aware partnership becomes harder to achieve or sustain.

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