To think you can just be sick. you don't have to be a hero too?

[Deverethemuzzler]

This is not a thread about an individual.
I don't want this to be about someone in the news.
I respect them and their family.
I would prefer people not to refer to anyone by name on this thread because I don't want this to be googable and for it to be turned into something it isnt.

This is about what our society has become.

I don't respect the media. I don't respect a society that feels it has to add inspirational labels to sick people in order for them to matter.

There has to be an hook to hang their admiration on and they can only care if they are given a BIG reason to do so.

A child has died. It is a massive personal tragedy. Every time a child dies a family dies too.

People who are sick should be allowed to be sick without being expected to be an inspiration.

To live with chronic and life limiting illness is enough. To get though each day is enough.

Why do we expect so much from people who have so little spare to give?

To everyone out there living with cancer, whether it be yours or your loved one's....I wish you the strength you need to get though another day.

jones I don't think so.
My DD died pre FB (before it was a big thing anyway).

People said that stuff to my face or in letters.
People turned up at the hospital or got my number and rang it.

It happened to friends too. People come out of the woodwork when I child is very ill.

To cry and sob and feel heartbroken whilst leaning on your shoulder and wanting comfort.

Funerals too. Packed to the rafters with people you don't know. Just wanting to 'be part of it'

It is utterly bizarre.

I agree with the OP and find it horrid that the media and public in general pay more attention to someone who dies if they've raised money or otherwise fit the "hero" "battling against x" role rather than just ill person who dies of x and who spent their terminal illness with their friends and families not raising money.
It shouldn't be all about the money. Money raised for charity is still money.
You aren't a better/ nicer person because you raise more money than someone else.
When I hear of people particularly parents of young kids who spend their last few months doing sporting events and endlessly fundraising rather than enjoying being with their family I think it's sad. The media does put pressure on terminally ill young people to feel that this is what is expected of them.
People commending dead/ dying people because they have raised money just encourage this.
There should be more to dying than money.

He was praised by the media as HE put himself out there.
So yes he does deserve praise and respect as he made something very positive out of HIS own personal tragedy.

For those that are saying OP is out of order for starting this, I strongly suspect you are the type of folk to whom she is referring.
For what it's worth, she is absolutely right, what a sick society social media is making us, in so many senses. We have become a society which quite literally hounds people on their death beds. Hounds them to become what we need them to be, not what they are, who they are, who or what they want to be.

OP

How did social media hound him? He publicised his own illness and decided to raise money. HE did it. HIS cancer. Why are people deliberately ignoring this fact?

He did put himself out there. He didn't sign over the rights or people to demand to know every aspect of every minute of his life. More than once the family requested time, space and privacy. That they should have to even request this is appalling.

It was HIS cancer, he chose to make it public, HE chose to live out his battle on social media and doing so he raised shit loads of money

^ This totally.

Everyone should be able to deal with something so devastating however they choose.

The timing of this thread makes me uncomfortable.

I agree OP. I am always deeply uncomfortable when 'the public' mourn. It feels parasitical. I know, of course that nothing will diminish the family's love or grief or depth of feeling, but I always think: "You didn't KNOW them, how dare you cry tears? They are not yours to cry." I have felt deeply, sometimes cried at news stories, tonight in fact, with that woman in Sudan, but privately, at home, not on my FB page. People love to vicariously feel something. My most generous description of it is a feeling of "There but for the grace of god" They can have a good cry and think, oh how brave, but the screen protects them from the true horror.
I'm not sure if I've expressed myself particularly well, but I want you to know that I understand your point.

I do however agree that 'grieving' and be devastated about the death of someone you dont know is a world apart from having respect from someone's sad passing.

Nobody has said anything HE did was wrong.

Nobody is saying that he shouldn't be praised.

Why is it so important for you to believe otherwise sharon?

He was hounded. He was forced to defend himself because he dared to be wrong about the time of his death.

Thank you half.

Yes there were some silly arses acting disgustingly troll like. Which sadly you will always get. But the vast majority of attention was positive and respectful.

That depends on what you consider respectful.

The timing of this thread makes me uncomfortable.
Why? The whole point is that people die, daily from awful, painful illnesses. Yes he chose to raise money, yes he put himself out there, not for you to grieve over, not for you to argue over. That bit is for his family, you know, the ones at home, torn apart by the fact that some cunt had a go on twitter, that the good he did was turned rotten by twitter and twats. He didn't put himself out there for that.

I think the op has said repeatedly that she's not referring to any one person.

It's the media and a large part of the public's reaction to any person's, but in particular to children's, terminal/chronic illness that sticks in my craw. As beautifully demonstrated by some of the comments on this thread.

YANBU.

I worked in palliative care and oncology yonks back. A couple of non-medical colleagues would go on and on about how AMAZING the patients were and how they found them so INSPIRING. I felt that by being amazed and inspired by these patients, they had ceased to be autonomous individuals and had merely come to represent something that my colleagues wished to project onto them. Why should people who may be at their most vulnerable have to fulfil this role for another?

Yes people who are terminally ill, or who have a serious disease, may do amazing things. But they are not amazing nor are they inspirational simply by virtue of the fact that they are dying or extremely ill. They may prevail despite their circumstances. But having a serious or terminal illness just sucks and I find it offensive when people try force a positive spin on another's experiences and situation.

YANBU.

I hate the "fighting" rhetoric. I have a life-limiting neurological illness (limiting as in what I can do now, and also in limiting my life span). It's not about how hard I try, how much I "fight" - it's progressive, there's no cure, it can be held back but will eventually progress.

The idea of fighting illnesses, especially cancer (a close relative currently has breast cancer), gives some so-called moral high ground to those who appear to be trying harder. When that's nothing to do with it. All the positive thinking, awareness raising, fundraising in the world won't make my nerves grow back. Yet people insist on labelling me as a "fighter". I'm not, I'm just getting on with my life.

Social media has actually helped me, in that I've come across people that have the same rare illness that I do. I don't put much on my main pages about my illness. I don't want to be defined by the things that are wrong with me.

YANBU, OP. Everyone is who they are, and labels like the ones you are talking about don't help. It reminds me (rather poetry geeky) of one of John Donne's poems, which says:

Any man's death diminishes me,
Because I am involved in mankind,
And therefore never send to know for whom the bell tolls;
It tolls for thee.

We all lose when someone dies, especially when a young person dies. We are all diminished when a life that could have been lived, no matter how prominent, successful or quiet or ordinary that life is. The young man we aren't talking about did a huge amount, and we should all be grateful for his life and sad that it has ended so prematurely, but his life was no more worthy than anyone else's.

juno thanks for that. I was just about to say the same.

What about J. Goody? Her home was besieged. She lived not far from me. People genuinely felt they had the right to turn up at her house.

Baby P? A national newspaper took it upon themselves to put up a headstone for him! They put up a headstone for a child the had no connection with so perfect strangers could visit it.

Irony of ironies....I just heard on the news that there are objections to a new Maggie's centre at Barts. The objects are to do with aesthetics.

That is how much we really care.

I've worked in palliative care. I can think of one person who was 'inspirational', others I became very fond of, others I found trickier to like. Terminally I'll people are people like any others.
A close relative had cancer, she was frankly a pita during it (due to sheer terror). She recovered, thankfully. The whole fighting/battling thing does my head in and I get where you're coming from OP. for you, the passing of a bright and beautiful teenager must bring back difficult memories of losing your own gorgeous girl. Xxxxxx

I agree with this and your FB message too.

It's like there's a certain model that a 'sick' person should be like/look like to garner the most sympathy.

DS saw the news and wanted to know why no-one raises money for his illness and maybe he was doing something wrong.

It's great that certain causes do get mass attention - but it's the chew them up and spit them out attitude of the media that sullies it. I feel for the family in the limelight. I can't imagine their pain - but there are thousands of families experiencing that whose unwell children may feel less worthy.

Also it's people's attitude to chronically unwell people. If they smile and get on with it they are brave but what if they don't?? My DS doesn't accept it and is terrified of medical staff. They don't think he's brave - they think he's a brat (a lovely hcp told me he was a nightmare). Why? Because he is sick to the back fucking teeth of needles, every week/month for the rest of his life. He's had enough. But apparently he doesn't qualify as brave because he dares to complain about his lot.

My post is a bit of a rambled mess and I'm not even sure I've got the point across. But my thoughts are with all of those families who have and are going through treatment of cancer

I don't understand your post eight

I hate the war language of illness. I think it does suit acute illnesses like cancer more, although I dislike the sense of blame it can end up having.

What I loathe about this analogy is its implication that effort in = wellness out. It references the idea of the human body as a machine, and that people are in control of their health and bodies... All ok concepts when you're well, but incredibly damaging when applied to real and devastating illness.

I was blamed when I got I'll, as I just had to fight more, or try harder, or put more effort in and I'd be fine. People at my work in particular did this, and it was cruel and horrible. friends, family, work and non specialist hpc's all pushed me to just try harder, and like a fool I believed them.

It left psychological scars to this day, and the guilt and shame I felt at letting myself get ill almost crushed me. Some people were just vicious, some hopeful and misguided, and it all came from a sense of cognitive dissonance... Life cannot be this cruel, this unfair and this uncontrollable. It's easier to blame the ill person than to change the false belief that we are in control of our lives.

So I tried to actively 'fight' my illness.yhere became dramatically worse. I did all the 'right things' with massive effort and intensity. When it didn't work I did more and more and more. I was chastised and humiliated by certain people that I only had myself to blame, I was t doing enough, fighting hard enough. I was 'giving up' and I quote 'you must want to be ill, what are you getting out of staying like this? Attention?'

The end result was losing the ability to walk for a year, and a permanent & needless deterioration in many other ways. I hate that I didn't have the self belief to tell people to sod off. I was so stupid and I'm permanently and severely disabled.

I do think people want 'a piece' of grief. I'm not sure why. I think it's normal for humans to be interested in death and awful things but I do agree with pps about publicly going on about how sad you are when it's not personal.

Those women screaming 'Diana!' at the funeral procession when the dead woman's young sons were right there in front of them really bothered me, I think social media has increased that type of behaviour.