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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

Are we a Community?

Author: Gaynor Leech, Founder of L-W-O

 

This is the third blog to the countdown to our 5th birthday in September.  Our Community Page on Facebook has been trial and error all the way.  When I created this page, I did not have the skills for my own personal Facebook let alone a public page for L-W-O.  My initial thinking was that it would help promote our website and I could add bitesize information that might help others living with lymphoedema.  Maybe by doing so I could get the message out that:

 

Lymphoedema exists, we exist

 

I never underestimate the challenges living with lymphoedema brings to our lives, but it must not define the way we live.

 

Compared to our other social media platforms, growth on our community page has been particularly slow although 2018 has seen an upsurge.

The page was created with a very long URL made up of our title and Facebook account number.  Too long for me to remember or anybody else.  My first post was on the 22nd September 2013 and read:

“The reaction from family and friends when you tell them that you have been diagnosed with Lymphoedema is lymph what?  So, after living with lymphoedema since May 2011 time to give something back to all the people who have supported and helped me.”  Take a look at my website www.lymph-what-oedema.com

That was the beginning of our online journey.  We had a small group of followers and then for me panic set in because people started posting their personal information, this was a public page.  I couldn’t delete their comments and didn’t know how to protect them from all the personal information being posted.  Luckily one of our most ardent supporters made suggestions that led to the birth of our closed support group www.facebook.com/groups/lymphwhatoedema, but this is a story for another day.

On the 19th December 2015 I changed the name from lymphwhatoedema and the very long numbers of Facebook to Lymphwhatoedema – LWO.  By this time, as a group we were using the title L-W-O more. I was never completely happy with the name change on our community page, it never looked or felt right.

By 23rd March 2016 as a group we had our own constitution, Trustees in place and applying for bank account was in process.  Other policies were coming together. Growth was very slow, but the name felt wrong and therefore I changed it to L-W-O – lymphwhatoedema.

In 2016 we started to receive invites to community courses, and events by our friends from Macmillan, Grapevine Coventry and Warwickshire, Warwickshire CAVA just to name a few. 

At this time, I was confused about our purpose because it was unexpected and I was humbled by the plaudits and support we were receiving.   I had a hard time accepting the compliments with one friendly acquaintance saying to another “She really hasn’t got a clue, what she has achieved”.  This was a turbulent time for me, my inner self kept asking do I wrap it all up?  Do I keep going?  The support of our members and the organisations that were now taking notice helped a great deal, but I was still very unsure.  I am sure many of you who have set up similar groups will identify with the way I felt because all this time you are dealing with your own lymphoedema.

You must remember I was officially a pensioner when I started this journey in 2013 I could never have imagined creating a whole new life for myself.  All I wanted to do, was support others so that they didn’t feel the way I did living with lymphoedema.

In one meeting I attended, all the participants where asked “What constituted a community”? There were nods of approval at all the answers, then my turn came.  L-W-O was operating mostly online, so me being me said “Online Community.”  Oops!  Silence, quick in take of breath.  Half the group nodded that maybe that was possible, some where silent and there where others that rudely didn’t think this was possible. That was a turning point.

Our friends started introducing me at Gaynor from the L-W-O community. I picked up the title of activist much to the amusement of myself, family and friends. My hubby of 45 plus years sat raising his eyebrows as if to say who are they talking about?

Finally, on 18th November 2016 I changed the banner of our page to L-W-O Community, by this time L-W-O was being called a Community by so many people.  We have a shortened URL and can’t use the hyphenated lymph-what-oedema because Facebook doesn’t recognise hyphens in a URL.  Now our Community Page is our public face at:  https://www.facebook.com/lymphwhatoedema

 

The above photograph is the launch of Asian Women's Breast Cancer Group, at Foleshill Womens training Centre in Coventry.   I was privileged to be asked to be on the steering committee.

Now I am comfortable with with our page because it also represents both our online work and the community events we are invited to.  The page has received many makeovers from me and in their infinite wisdom Facebook algorithms!  The activist  title has gone and changed to Advocate.

None of this would be possible without our members, followers, volunteers and those organisations that continue to support us.

‘Are we a Community?’   Many of our members have made friends with each other.  We continue to evolve, we have a following right across the UK and although we have had global members from the beginning, 2018 has seen us become part of the global online community.  We have recommendations from our UK community and our global community, we share knowledge and respect for each other because we are the people who live with lymphoedema/lymphedema.  Importantly groups like L-W-O are reaching people who have received little or no support for their lymphoedema.  Lymphoedema online groups are teaching those living with lymphoedema to be their own advocates.

We are a Community

 

I can’t put a better description together of our online community than our Canadian supporter Steve Kelland from Lymphedema – LE Nexus, Canada:

“Shrinking the Lymphedema World while Strengthening the lymphedema Community…upside & down under!”

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