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.

YANBU. But I think you should possibly tone down the 'fuck yous'. It is early doors, and other people are entitled to their opinion.

The young man to whom you refer was exceptional. But when he passed I wondered if his amazing courage would be used as a stick to beat other people with. I am concerned that people who are sick already face pressure to be 'brave' and 'inspirational'.

There's a great book by the American journalist Barbara Ehrenreich called 'Smile or Die', which describes how when she had breast cancer she faced outright hostility when she wanted to (quite rightly) be angry, or upset. When I went through fertility problems I had the same; idiots who told me that if I 'thought positively' I would have a pregnancy. FFS.

The thousands of people who are ill who don't want to be in the spotlight are left to get on with it in their own way.

What exactly is it you want here?

You don't want sick people to be treated as if they are handling it well, even if they are, you don't want people to be seen as heroic, even if their bravery does astound people, so what do you want?

I have never known anyone with a long term illness be expected to be a warrior with a smile constantly, nor have I ever known loved ones of those who have suffered be expected to. And I've known more than my fair share.

I agree with you as somebody with a medical condition it is hard just being sometimes, I dont have to be an inspiration to anybody or do something outstanding I have been called an inspiration because I had children once I thought eh what somebody who has a disability or a life limiting illness is not always brave strong or a hero and I think it can be patronising to a person to say something like that about them when they struggled to get up in the morning

this may seem like a thread about a certain young man but IMO it isn't

Because when they've had their 5 minutes of feeling good that they were waving the flag for such a tragic individual, the families, the loved ones, have to carry on living each and every day.

We live in a society that goes from one 'high' to another in the news. Sadly a tragedy unfolding before their eyes gives society that high.

I think there are several points here to unpick:

-social media is changing the way we act- we expect constant information/we feel like we know strangers.

• at the same time we don't have the vocabulary to deal with dying or death. We grab for platitudes and they really sting.

• people are dim. They like black and white and can't deal with nuance/grey.

It's social media.
There generally seems to be a bit of celeb bandwagon jumping too.

It's fantastic for the charity but for the individual family it's intrusive.

Sometimes the wish to do something in some small way can be taken away and blown up grotesquely. It grows legs.

The timing makes it so mrsj

I think it is because our society has become overly focused on the individual. It started with Big Brother and reality shows, translated into social media. Most people today are insufferable and incurable attention seekers who need validation in everything they do.

You cant do anything without adding a selfie or a post somewhere.

I am angry balls. I am angry that if you try and talk about this that people willfully misconstrue and make it something else.

I think they do this because they don't want other to ruin the moment.

Its not a moment for those it actually touches. It is forever and ever and every.

You are right of course. I shouldn't be fucking this and fucking that. Its just so frustrating that people don't want to know.

The idea that I would start a goady thread about teenager cancer is the most ridiculous notion.

Why have you posted this? You must have know who people would immediately think of and nowhere does it say every ill patient has to be a hero. No one can control what another person does in response to a situation and most people will get sick and die and the whole world won't know about it. I am not sure that is better.

There are parallells to real life though.

People who gather at accident sites. People who slow down, not to help but to gawp if they see a car crash, or an injured cyclist.

I remember being out in a rural mountain village with a very sick near comatose child, laying motionless in my lap, in just a nappy, outside a small "clinic" at a tea plantation. The amount of people coming up to me to giggle, poke my child, and just chatter among themselves while ignoring me and my tears. It is what people do, and social media facilitates these attitudes.

People are not willfully making it about something else, people might just have a different perception of the same thing.

You are not taking on board any of the valid points of view that have been put across.

I think I know where you are coming from OP. And I understand that you are not seeking to denigrate anyone. I sense you have first hand experience and I think it's unfair to accuse you of being "goady" or wanting a "bunfight". I honestly don't think you are going to be able to have a constructive discussion on MN today without receiving a huge amount of flack. I think that's unfair but I can understand too. Are you able to speak with people in real life? I hope you can have this conversation in an open and frank way in a supportive environment where you can really explain yourself. Take care.

What do you mean why have I posted this?
I have explained already.

I have not once seen any mention of the reality of what that boy and his family have had to live with.
What the 6 children a day who are dx with cancer have to live with.
How the stats for remission do not apply to teenagers.

Because people don't want to know.
They want to think that its all ok because as long as you do something amazing everything will be fine.

It isn't fine. Its as far from fine as it can be.

What valid points?

I haven't really seen anyone. Just people horrified that someone might harsh their little buzz.

I agree that people expect others with cancer or other such illnesses to be strong and brave and 'fight' it (a word I loathe: I survived my cancer since some amazing scientists found the cure a few decades ago. It was nothing at all to do with my strength, positive attitude or other such junk. I could have been the weakest, most negative person on the planet and I still would have survived provided I'd had the drugs).

It's because people are too scared to face our weakness and vulnerability in the face of such diseases. Sufferers admitting that they are petrified and in pain and, well, suffering, is scary. We'd rather believe that people can cope and that if it happened to us, we'd be fine.

Which is often utter rubbish.

Brilliant post JohnFarleysRuskin (and brilliant name too).

Social media makes some people act in very odd ways, as if they own you or your story in some way. That's why I never feature my children on it, ill or well.

I'm sorry for your pain OP.

Cancer is in my immediate family too. Incurable. If anyone imposed that kind of narrative on the sufferer in my family, I would be furious.

There has always been the rhetoric. I think the point is that social media has built on the existing language and made it law.
THIS is how you will be
THIS is what you will look like
THIS is how you will face it.

What about those who just can't?
That does not take away from those that can. It doesn't take away from the achievements of those that use all they have to do amazing things.

I am really pleased that some people have been able to organise their words better than I.
This is an important issue.
It matters.

This is not the first of last instance and I fear the expectation are getting higher and higher.

The way that people turned on that poor boy when he managed to get out of hospital for an extra week.

That didn't come out of nowhere. That is a direct result of the way we have taken ownership of the lives and deaths of anyone who dares to be in the public eye.

I don't think for one minute Deverethemuzzler is saying that people can't do heroic things when they have cancer. It is, I think, more about the expectation of society that people who are already at an extremely vulnerable time in their life will 'step up to the plate' and inspire the nation.

What happens, at times, is that one small act gets picked up by the media and then it snowballs. What was just a small act gets turned into an Event.

Many newspapers don't even ask permission to cover this stuff. They just copy, paste and embellish to their hearts' content.

I've had people tell me I had MS so they could be compassionate and care for me

smh

Thank you Lougle.
No they don't ask.
A friend of mine was hounded by the press when her child died.
She owed them, because her child had a media profile. Unasked for but that didn't matter.

Julia I bet that made you feel like it was all worth it?