Tuesday, 26 August 2014

Why people with chronic illnesses dislike #challenges

First things first. Let me just say this is not a stab at any genuine efforts to raise money for charity. I, perhaps more than many understand the value of charity and how much it is needed. It really should not be the case that it is, when it comes to medical funding but sadly it is and without it many people that are facing a chronic illness would have no hope. I am one of those people. So in no way would I ever dislike such efforts.

The issue comes when a fundraising concept turns into a social media phenomenon. In one way this is great for awareness, getting celebrities involved and sharing with their millions of followers is a fundraising dream. But somewhere along the way the charity and awareness drop off. What was the #ALSicebucketchallenge just becomes #icebucketchallenge. People get caught up in watching famous people scream and then daring their mates to do the same, because 'it will be a laugh,' or you want to get your own back. The illness it's in aid of gets forgotten. It took me a good few videos until I found out it was actually for charity.

The ice bucket challenge was devised to mimic the seizing up of muscles that ALS, or Motor Neuron disease as it is also known, patients experience. A lot of thought went into what would be an applicatble fundraiser for this devastating illness. So to all of you that have done the challenge and actually made people aware of the reasoning behind it and told them how they can also help to raise money if they want to, then I applaud you. I hope you've also donated what you could too.

But raising awareness and funds for diseases should not be about showing off, or wanting to upstage your mates, and forgetting why you're doing it. It shouldn't be about nominating someone, daring them, calling them a chicken if they don't. Charity is about generousity and belief in a cause not badgering. How many times do you pretend to be on your phone because you don't want to talk to the charity people on the street? Saying I nominate you to do this is also saying I nominate you to give away your money. Something I'm not sure you would say to someone, unless they were Bill Gates or the like. Why not just say 'I'm dong this to raise money for ALS and if you would like to donate here's how?' (Details at the end of this post.)

I know, people go to great lengths to raise money for charities that they believe in but the difference there is that they always stay true to their goal and the reason why they are raising money. Often it's personal and they want to make a difference for someone they care about. Charity is personal, it's about giving somebody that little bit of hope that things will get better with that money. How many of you well up at all the video clips on Children in Need and Comic Relief? Seeing charity offer people a chance.

As I said I am one of those people who is currently relying on charities to offer me some hope. To find answers. So perhaps you can imagine where I'm coming from, when I say don't get swept up in a craze without thinking about the difference people are trying to make. I'm not saying don't do it, post that no make up selfie or throw that bucket of ice water but please do so with a responsibility to the charity. Putting your hand in your pocket, or spreading awareness is much more important. And if you tell your mates how they can help too then even better.

So this does not come from a place of bitterness. I'm not in a tiff, thinking 'this should be to raise awareness for...', or 'such and such is a more worthy cause.' Of course I would love M.E to be recognized on that kind of scale of fundraising campaign. And one day hopefully it will be. Jealousy amongst charities is sad. I simply wanted to point out the nature of charity and how it's something that doesn't deserve to be turned into a dare. So please do the challenge responsibley and mention how you can help. Just in case anyone didn't know, you can donate via text message with the following info, no freezing yourselves is required, unless you really want to.

Text ICED55 followed by £1, £2, £3, £4 or £10 to 70070

Sian

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