The Poverty of Severe ME


The poverty entered into here is a stark and complete poverty. 

It is a poverty on all levels: poverty of wealth - unable to earn money you rely on benefits which are not easily gained, or easily kept , neither do they provide for more than the minimum of life.

Poverty of pride, you have to sacrifice all self esteem as you search more and more for charitable grants to meet your basic needs, crushed by rising prices and dwindling funds

Poverty of family, you become alienated from their normal lives ,  they  shut you out, they get on with normality rather than enter into the path of suffering you endure moment by moment, too careless of your feelings, too busy in their own lives, too angry with you for not being who they want and expect you to be

Poverty of neighbour, you are unable to maintain contact, reciprocate favours, join in social events you become isolated even from those in closest proximity.

Poverty of friendship, people simply get fed up with your lack of presence, with the difficulties of communication, they cannot and do not understand  nor do they necessarily want to be that flexible, you become less visible, they move on and forget you, you become at best a Christmas card or birthday card, more easy to maintain than any genuine relationship that has costs and complexities involved.

Poverty of local community, you are  not seen or heard, not being able to engage on their terms, you become invisible.

Poverty  of religion,  the religious who do not know God, who  know religion, who are so  caught up in self -importance, in ritual, that they cannot reach out beyond a general do good feel good factor that meets no real need, do not visit.  Church becomes an impossibility to attend, prayer groups become an impossibility to  attend.

Poverty  of social norms - you simply cannot comply with normal expectations, meetings, deadlines, red tape, procedures, social gatherings, social events .

Poverty of state support , the spin around chronic illness, the denial of what the state is dong to collude with big industry rather than meeting honestly the challenge of a heart - breaking tragic physical illness is staggering and hard to believe .

Poverty  of  understanding , many people simply do not understand the vast complexity of need nor the physical suffering a chronically ill  person  experiences ;  they are thought of as people who have made themselves ill due to wrong thought and laziness,  considered scroungers on the welfare state, completely denied access without huge battles to get their basic needs and rights me.

 Poverty of kindness ,  there is a shocking ignorance in the general public even in those closer to a person, that leads to unkindness, thoughtless gestures, exclusions, hurtful comments and all because  of ignorance and lack of a genuine desire to enter into this place of pain and stand by you in this very painful place - few bother, few dare to care enough, many are thoughtless or deliberately unkind and uncaring.

Here we live,  on the edge of society, on the edge of heath care provision. On the edge of surviving.

Comments

  1. Modern society is not set up to deal with long term ill health. If you get ill, you are expected to recover within a respectable time frame. Once that time goes by, things get more complicated.

    There are no easy answers. I think you are right with this however "few dare to care enough"! And those that do are worth their weight in gold. Society and those in positions of influence need to change with regard to their outlook.


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  2. Very well-written and eloquently expressed.

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  3. Thanks Greg. It removes some of the craziness factor out of my head to see this laid out so clearly. It´s better to realize those facts than to suffer from banging ones head against the wall of denial. You, are helping me again. The truth is such, G. Iceland

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  4. True of the aged also - too old to participate - left alone to die

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  5. I needed to hear this today. I tried a "normal's night" out with my son, last night. I was paying for it before I got home. Accepting the unacceptable as a parent is beyond heartbreak! Thank you for this painfully truthful description of existing with ME. We are breathing and "living" a life nobody can understand, unless they become ill with this isolating disease.

    I consider myself fortunate, as I still have friends and family that still care, even from a distance. Still isolating even with emotional support, as life passes you by. GB FL USA

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  6. Thank you all so much. It is good, sometimes, to acknowledge the poverty in ME, so much more than financial loss, that leads to an isolation beyond most people's comprehension.

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  7. Yes I can agree with all the above. Thanks for sharing. You're not alone

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  8. Complete poverty is a perfect description for what ME is, especially for those with severe ME. Thank you Greg.

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