Friday 22 May 2015

Self-doubt

Hello,

Foggy is resting his paws in Deal, Kent; waiting to jet off to the Philippines on Sunday morning. He has given me permission to write another blog post.

Hi,

I have made some truly wonderful friends through this campaign and I hope these lovely people are now lifelong amigos. They constantly praise my efforts and spur me on when, on rare occasions, my enthusiasm and positivity wanes. I have never met these people and yet we are like kindred spirits; I don't feel I could have coped without their support and inspirational emails.

Here are a few extracts showing the love these men and women show me on a regular basis....I am very lucky xx

'I never know if it's weird to tell someone I'm proud of them but I really am. You've done so much to raise awareness and funds, I think you're amazing. How anyone has the courage to stand up and present for half an hour with brain fog is beyond me!'

'I KNOW you don't appreciate how good the campaign. That's why I keep telling you how great it is!!'

'You know I heart Fogs. And love everything you do. Don't underestimate the impact you're having on people with ME -to know you're championing the cause even though you're ill yourself means the world x'

I am writing this blog because I am constantly filled with self-doubt that this campaign isn't as good as many people keep telling me. I want to explain why. When I started this campaign I had hoped that
people that I am in daily contact with would read all about this dreadful illness, engage with the campaign and realise why I am like I am. However, many of the people closest to me: friends and work colleagues, are still no closer to understanding the illness than they were on day one of this campaign. I have discovered that you can't force people to engage with an invisible illness. Engagement with the campaign in my workplace is probably around 5% of staff...such is life. 

Most of Foggy's donations have come from sufferers or family/friends of sufferers. It is unacceptable that sufferers have to do their own fundraising. As I said in my International ME Awareness Day talk, more funding should come from the world's governments, as is the case with other illnesses.

It is not possible to determine whether Foggy's non-suffering Followers have engaged with the M.E. awareness aspect of the campaign or whether they are just liking the character of Foggy. If any non sufferers would like to get in touch to tell me they have been made aware that would be great. I only ever receive feedback from sufferers. As lovely as that is, there is no point in raising awareness amongst people who already know everything they need to know! Foggy and I love all of our Followers regardless of their state of health; we just wish we could tell whether our mission of raising awareness, amongst non sufferers, is being achieved.

Then there is the media. Despite my best efforts I simply cannot get any national newspapers, magazines or TV programmes to cover Foggy and his
World Tour. This gets me wondering whether my campaign simply isn't good enough for their attention. All of the positive feedback I receive from Followers completely clashes with the white noise coming from the media. I have lost count of the number of emails, letters, tweets, facebook messages I have sent trying to highlight the campaign but to no avail. I find this incredibly frustrating, especially when I see some of the rubbish that actually makes it into these publications and programmes. Sometimes it feels like I am banging my head against a brick wall. It has also been impossible to get the acknowledgement and support of a celebrity...any celebrity will do....just to help spread awareness quickly and further afield. Again, no replies have been received from A-Z list celebs. Believe me, I am trying!

Despite all of my self-doubt I will be forever grateful for the support and love I have received from thousands of people around the globe. I just hope I am doing a good job.

Sally xxx

1 comment:

  1. Media has become a rather fickle. Rather than highlight important issues, like ME-CFS awareness, they seem to prefer what's popular, which is often rubbish.

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