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who cares about fibromyalgia?

PostPosted: Sun Aug 31, 2014 4:56 pm
by alibp
My partner gets upset that sometimes there is nothing he can do to make me feel physically better. During my last flare up it really got to him so he decided to do something. He decided he would get sponsored to have his legs waxed. He asked for sponsors to donate to Fibromyalgia through a just giving page that he made and even set up text donation so if people don't have much money they could text to donate £1.

His sons who are 14 and 16 said they would do it too in the hope it would get even more sponsors. They have all shared the link and my 2 daughters and me shared it too but it's been a few days now and he has been sponsored £2.

Earlier this year my daughter had her lovely long hair cut off for the little princess trust (they provide wigs for children that have lost hair due to cancer treatment). She raised £450 she got over £100 of that in the first day.

Many of these people know that I really suffer and know he struggles too yet nobody seems to care that so many people suffer every day. Seems we just aren't trendy enough. Trying not to get cross. He thought he finally came up with a way to help but now it's looking like he won't even get that chance. :(

Re: who cares about fibromyalgia?

PostPosted: Sun Aug 31, 2014 9:31 pm
by HazelB
It can be so down heartening when you how quickly and readily people will donate, for example to cancer charities... But when it's something less known they don't bother.

I've been in same situation, where I have donated often to friends charity efforts - but none of them donated when it was me doing the fundraising event.

I'm not sure what the answer is... Just keep sharing and posting what they are doing, and raise as much awareness as you can in the process. Xxx

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Re: who cares about fibromyalgia?

PostPosted: Sun Aug 31, 2014 11:11 pm
by rich44
I think fibromyalgia needs a sexier sounding name, then we might do better lol

Re: who cares about fibromyalgia?

PostPosted: Sun Aug 31, 2014 11:16 pm
by alibp
A few weeks ago I decided to raise awareness amongst my friends. Every few days I will post something like a simple article or a picture that is to do with fibromyalgia and I have started to sometimes do a facebook status explaining how I feel that day. I also have epilepsy and in the past was surprised by the lack of knowledge and the hurtful assumptions but it is so much worse for fibro.

I know at least a few of my friends now have more knowledge and maybe some understanding at least.

Re: who cares about fibromyalgia?

PostPosted: Mon Sep 01, 2014 1:38 am
by zappa20
That's a real shame and very discouraging. It might be because people aren't much aware of the condition, or because there are just so many separate charities fundraising these days that people are saturated with them and become indifferent to the causes, with few exceptions. Many charities have also seen a drop in their donations over the past few years, due to some charities being subject to bad publicity.

I donate about £20 per month to 2 separate charities so tend with few exceptions not to add any more onto my list. Even then if you start one of these direct debit schemes your name is sold to others who call you or the ones you're already donating to contact you to ask for additional funds for one off special fund raisers which can get a bit overwhelming.