You asked me the other day about activism and what it meant to me and I have been musing.
My first question is what is Georgie's life worth? What price? Answer. Priceless. And that goes for every patient. Their lives are priceless.
The first thing is that I fell into activism unwillingly. I did not want to be involved with eating disorders at all. They were for other people and I had assumed, rather naively that there would be help and support for me within our National Health Service if it happened to us. Then the bottom fell out of my world and I realised that I was alone in all this, despite expensive treatment and expensive advice. Nobody really got it, except the Forum. I fought the family, the doctors and the anorexia all at once. It was then that I realised that I HAD to do something to help.
So what do I do? The forum, obviously, which I try to get on to every day to offer my sometimes unwelcome advice. The C&M films which were born out of a fun email and have become an invaluable tool in spreading worldwide some basic ideas. They are not only my proudest achievement but, much more importantly, they have given me my soul mate in M. As of this morning, we are on nearly 10,000 upload views on You Tube and over 5,000 views on Xtranormal. We started in January. Finally, it has given me a circle of friends, all over the world, to chat and interact with. We all come from different places, classes, creeds and colours but we are all united in one purpose, one goal.
I write to the Prime Minister on a regular basis. Not that I get anywhere or that he replies. I get endless letters saying the same thing from the Department of Health - computer generated? I think so. That does not stop me nagging him on a regular basis. I interact with other ed professionals, disagree with them, massage their egos, listen to what they have to say and sometimes I want to smack their bottoms. They can be narrow minded and insular and cliquey and petulant, just like us. They are not gods. However, they DO have their hearts in the right place and tend to be good, kind caring people, just like me.
I have made no secret of Georgie's illness or our treatment module or my ongoing activism, which means that people come to me and I point them in the right direction. I don't win them all over (grrrrr) but slowly, steadily, I am becoming a port of call amongst friends and friends of friends, so at least they have the information to make the right decision. THAT is what it is all about. Getting information to people.
It is the how that is difficult. It is where we need more people to understand that sharing a blog, liking an article, Facebook and Twitter and all the tools we have for spreading information are vital. One friend of a friend might notice a shared link on Facebook and work their way back to you, or me, or any other Feast/ATDT member and begin to get the right treatment. I feel it is SO important that people realise this. Without disseminating the information, no one gets to read it. Even half an hour a week CAN make a difference.
BUT we also have to attack the stigma. There are so many parents who are happy to lurk under an assumed name on an anonymous forum but would hate for their family and friends to know that they are associated with an eating disorder. Why? Because anorexia is a diet gone wrong, bulimia is harmless and slightly revolting so shouldn't be talked about and as for Binge Eating Disorder, well, heck, they are just greedy - they could learn from the self-control of an anorexic, right? So how do we tackle that stigma? I don't know. I just rant about it, explain it, talk about it in general "autism" terms, try and embed it in people's subconcious and hope that they will pass it on. Am I winning? I don't know. But every time someone sees Georgie and says "Wow, she looks great - just a different person", every time one of my children gives a lecture at school, at home, at a party wherever and just one person "gets it", I know the fact that an is a serious illness, not a lifestyle choice and, most importantly, it is curable is beginning to creep through my particular strata of friends and acquaintances.
I want to do more but I have neither the time, nor the energy. However, if everyone does just a little bit, maybe the Chinese whispers campaign will work. Half an hour a week may just save someone's life. And their carer's sanity.
So why do we do what we do? I sometimes think that the sheer will of the forum, those who are visitors, those who are members that don't post and the vocal few who do, gets some parents through. I don't know anywhere else where there is so much hope, goodwill and kindness. That makes the difference. Then we pay it forward. Whether vocally on the forum or silently in our daily lives. We save people's lives every day. Not because we are doctors or nurses or paramedics. But because we care enough to read and learn and pass it on. And I, for one, am immensely proud of each and every member of our little community.
The way forward. What can we, as members of FEAST and the forum, do? Well, I think we have done a whole lot. We have taken a model, a good model, the L&L FBT model and used it as the basis for treament and then adapted it to suit the family. I am sure that neither "darling Danny" or Jim stick rigidly to the model every single time. I am sure they have moved on and adapted for various patients, like Walt Kaye and Julie O Toole and Janet and all the other warm, wonderful, kind leaders in the field. No one patient is the same. No one treatment is going to work for everyone. Therefore, I think it is important that we, as parents and carers, move away from trying to get the professionals to agree and instead move forward with our form of FBT - the Feast form or the ATDT form - call it what you will. The name doesn't matter for the moment, because we don't have one. Yet. We need to find one but we don't need to spend valuable time and energy on getting the professionals to agree on it. We need to show by example that it works. That we are the first port of call in an ed storm and, even if for whatever reason, FBT doesn't work for that particular family, there is no blame and no shame attached. We need to keep offering other strategies, from acupuncture to Trion Z therapy! We need to keep offering comfort and support for those in the trenches. We need to lead, so others will follow.
And we are. Slowly. Painfully slowly. But like treatment, this is a marathon not a sprint. The more members we gather, the more families we help, the more hope we offer, the louder our voice. It is time to change our strategy and stop trying to herd cats. It is time to lead by example and let the professionals come to us, rather than taking our begging bowl to them. We have some wonderful, amazing clever clinicians as advisers. They are inspirational. And there are more and more of them. Perhaps, it would be better if we were their gathering point, their flag in battle, rather than they being ours?