Author: Gaynor Leech, Founder of L-W-O
As we approach our website and Facebook Community Pages 5th birthday in September I often wonder whether the bubble will burst?
I was diagnosed in May 2011 with Secondary Lymphoedema, I cannot emphasis enough the anger and isolation I felt, not for being diagnosed, but for the lack of information, the dismissive attitudes of health-care professionals, the general ignorance that surrounds lymphoedema. Followers will know that I love writing because I find it cathartic, therefore I read as much as I could to find out about my newly diagnosed condition that, started me on a new journey in life that I could never have envisaged for myself.
My journey led to our website and a first for me a Facebook Page www.facebook.com/lymphwhatoedema this was very basic and if I am honest I hadn’t got a clue what I was doing. Both the Facebook page and website have evolved so much that they don’t look anything like the early offerings. We started with the name lymph-what-oedema and as we developed that quickly became L-W-O and it is now the name that has become a recognised name in the world of lymphoedema.
Was it an easy journey? No definitely not, I thought throughout my life I had met people who relished in putting you down, trying to bend you to their will and that now I am in my 60’s I was done with all that. How wrong was I? Like everything in life while these people can make your life very difficult they mustn’t be allowed to get to you. Although these people haven’t gone away completely they are very much in the minority.
L-W-O has achieved many things over the last five years including acknowledgement and respect. I am very lucky to have a large family, some wonderful friends but over the last five years I have developed a new circle that I call my ‘Friendly Acquaintances’. These are the amazing people who live with lymphoedema who follow L-W-O across our social media, read our website and become members of our closed support group www.facebook.com/groups/lymphwhatoedema they are my heroes they give meaning to life and make all the highs and lows worthwhile. For the time being the bubble is not ready to burst and I look forward with our members to moving forward and getting our message out that:
‘Lymphoedema exists, we exist’.
