This article is so clear and poignant. I recommend sharing it.

[budgiefriend]

Written by Jeannette Burmeister's husband about the contrast between attitudes of people toward his hip replacement surgery and towards her severe ME

thoughtsaboutme.com/2015/04...

[Ian123]

“The true measure of any society can be found in how it treats its most vulnerable members” - Mahatma Gandhi

The strongest support from other members of the ME community tells a familiar story, knowing what been one of the most vulnerable feels like we can measure society.

[Seascape]

Repairing a hip say get well soon send a basket all done long time ill that wears down on quick fixes in busy lives. Doctors see the same no quick fix patients keep on coming back same as water on a stone a steady drip wears down on them.

Living with reality looking out for the smallest hopes makes us stronger than we ever believed we could a stumble or fall then dust down payback keep on.

[budgiefriend in reply to Seascape]

I know what I am writing here now is going to qualify as a RANT. but maybe some of you will get relief in seeing your own feelings in print, too. We can 'rant' in silent text together, if I am permitted to write this here for you to read.

I felt desolate and in pain when I read this article. I also felt deprived of a caring partner such as Jeannette Burmeister is fortunate to have. Those who do have that, I am indeed happy for them. I don't want everybody to be so alone. But for those of us who live alone, family and friends could be supportive and often are not at all--even abusive.

A day or two later, I now feel more angry than sad and desolate about it.

I agree with your comments. However, comparing the difficulty of dealing with a friend or patient who is chronically ill compared to the patient;s reality and difficulty of dealing with the problems and needs of chronic illness seems backwards and petty on their parts.

It is their responsibility to sort out their attitude and provide some support if they value the relationship or the person. They often say they do but do nothing at all, preferring to blame or be 'too busy' to call or stop by for 5 minutes.

As for family and friends... I'll bet they don't consider it such a chore to chat with other healthy people in their circles... even spending hours on social media chatting to people they don't know, and listen for hours to relationship problems or money problems or whatever.

I think their lack of support is due to their unwillingness to deal with their own mortality and vulnerability--the reminder that it could easily just have been them in our place. There is massive denial of this reality. Plus in many cases they have inappropriate expectations that we should do what they think they would do on our position (despite having no idea what it is like to be in our position).

I have decided that a person who can't be adult enough to challenge their prejudices and make reasonable adjustments to their expectations of what their friend 'owes' them or ought to do with regard to illness and treatment, are not people who truly care. They cause more pain than anything, and I find it difficult to cope when they abandon me, but I don't feel they are justified in doing it.

Our emotional suffering, indignities, doing without, and lack of concern or compassion are continual and heaped upon us, just like the accumulation of symptoms growing worse and worse when we sick people are forced to push overtaxed bodies to the point of further sickness and exhaustion just to get food or go to the toilet, or get a doctor to listen to our needs.

The drip drip drip of our needs and requests, even for a few minutes of someone's time to listen or give a hug, represent humanity falling again and again upon an uncaring or negligent or impotent cultural stone. Stones have no feelings and nothing to offer.

It is a human being with an open heart and a willingness to try on someone else's behalf, to ease suffering in a whatever way they reasonably can, that turns that 'stone' into a compassionate human. Surely that is not too much to ask.

The powers that be upon which we depend and those in our personal circle of family and friends have much they could offer. For starters, an appropriate response and attitude toward someone in need whilst they, in comparison, have all they require and more.

It's more fun to spend two hours idly chatting to strangers about cat videos on facebook, than to spend 15 minutes running a desperately needed errand for a supposed friend that you say you care about.

[SophiaG in reply to budgiefriend]

Clearing emotion with rant or cry my children call venting a good sign of caring when they have no emotion it's bothered do I look bothered never can I think of saying this for my parents.

Speaking with text and facebooks real world is gone no time for now always later after when we need.

[budgiefriend in reply to SophiaG]

I hear you. I am sorry you have people in your life who are not treating you as you deserve to be treated. It is difficult not to feel continually hurt by this.

I try to keep reminding myself that I can't change how other people behave or what they choose to do, and focus instead on how I am behaving. I usually find something I can do better... but still feel hurt much of the time.

I think that is something a lot of us with ME have to cope with, as even those with a wonderful partner will still have people in their lives who are rude and lack empathy.

[slowmotion]

Shared on my Facebook helps lots on understanding from family

[budgiefriend in reply to slowmotion]

hugs

[nedd]

Thanks for sharing.