No Way to Live

 


NO WAY TO LIVE

It has to be the most heartbreaking place imaginable. Those who suffer from profound hypersensitivities on multiple levels, endure indescribable suffering.
It is no way to live. It is no way to have a mutually enjoyable relationship or any relationship at all with other people. It is no way to feel comfortable, safe or equal in the world.
How do you convey to someone who does not notice, how much they smell and what a massive risk that poses to the person who suffers from Perfume Sensitivity ?
How do you convey the extreme pain that flicking a light switch on can cause to someone with Light Sensitivity ?
How do you begin to explain the dire torment of noise sensitivity, which makes going out into the world very challenging or even impossible?
For a person with Touch Sensitivity the slightest pressure can feel like a heavy weight and be intolerable. Clothing, bedding, personal contact of any description, may be agonising.
How can people remain in loving or social contact in such circumstances? It leads to a sense of feeling that other people simply do not care enough to ‘get it’ or make enough effort to understand.
What do you do if the person’s paralysis, multiple hypersensitivities are so profound that they cannot bear any touch?
How do they get medical tests done? Blood samples taken? Intimate care needs met?
What if they cannot even bear your presence in the room, because of their acute hypersensitivities? What then? How do you provide care? How do you show affection or give comfort? It is a truly difficult position to be in.
How can the person not feel broken and invisible to others, who simply cannot or will not comply with or truly comprehend the need to be aware and take care?
The experience of having multiple hypersensitivities leads to a continuous and massive sense of alienation.
For those enforced to live like this for decades, never finding alleviation, nor comprehension of their devastating experience, every day’s experience is compounded by all that has gone before.
They literally can go nowhere safely or have visitors in their house safely. All of this has been hugely compounded by the pandemic.
The person does not then just carry the pain and difficulties, the reactivity and complexity of the moment, but all the pain and separation collected from every moment, from every painful interaction, from every denial of their reality, which adds up over decades to mountains of neglect and isolation on every level, too huge to describe, too vast to contain.
Adapted from More Notes For Carers https://stonebird.co.uk/morenotes/index.html

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