The LUPUS EUROPE 2018 convention is underway in Leuven, Belgium and among the serious speeches on medical and psychological topics, we were delighted to be presented the beautiful (and very creative) word cloud entries in the Kick Lupus competition. All in all there were 35 entries to the competition, a great response!

The judges on the Kick Lupus panel had a hard time choosing who should win but we are delighted to say that our winner is Sara Woods from the UK.

In addition to her beautiful piece of art, Sarah has written a text with her story and a poem. We are so glad she was able to come to the convention and share her personal story with us. We are sure that her artwork and words will resonate with many of you.

 

 

Here is what Sarah had to say…

I think in order to fully understand my cloud you need to hear my own personal Lupus story which begins before I was even born.

In the late 1970’s my grandfather, Arthur was diagnosed with Systemic Lupus Erythematosus (SLE). Due to the lack of knowledge about Lupus at the time, my grandfather was diagnosed when he was in the later stages of the disease. He was asked to attend Doctors lectures in order to help spread awareness and knowledge of the disease so I know he wouldn’t mind me speaking of him to you today.

Sadly my grandfather passed away in 1980, only a few years after he was diagnosed, due to complications associated with Lupus, leaving behind two daughters (one of which is my mum) and a wife – he was only 53 years old.

I was born 18 months later. Though I never knew my grandfather I grew up being fully aware of the massive void his death had left in the family.

Fast forward 15 years or so and we think I first became unwell with SLE in my late teenage years. I would feel fatigued, achy, run down, would experience a swollen, ulcerated mouth and regular ear infections.

Despite visiting my GP and dentist multiple times in an attempt to get to the bottom of my symptoms, and mentioning on numerous occasions that there was a family history of Lupus, I wasn’t properly listened to and so consequently didn’t get a confirmed diagnosis until earlier this year when I attended a GP appointment armed with a lot of research which I believed pointed to Lupus – I was correct.

I have been receiving treatment for my Lupus since May this year and I am already feeling so much better in myself. I am managing to work full time an NHS Mental Health Nurse, whilst also being able to cope with caring for my 3 children – all of which was becoming a near impossible daily challenge for me before my diagnosis.

So for me having a diagnosis has been life changing. Yes, it has been a blow for the family to find out that I also have the same condition as my grandfather, but at least I am getting some level of normality back in my life due to adequate symptom control after battling on and on with the symptoms for so many years.

Sadly I am well aware that I am far from unique when it comes to getting a timely diagnosis and appropriate treatment. I feel that in order to truly ‘Kick Lupus’ this needs to be addressed, hence my decision to spend time earlier this year when I was off work recovering from a Lupus flare creating my word cloud.

I have always been a creative person and I actually use art as a tool to help people with mental health problems in my place of work. I enjoy drawing, writing and music as I believe they all hold therapeutic elements that can promote healing – this word cloud certainly became part of my own healing process when I crated it.

I chose the theme of a tree to ‘Kick Lupus’ as it promotes the notion of growth, life and renewal. Trees also have strong roots to ground them and to provide stability as well as the need to be well fed and nurtured with its many networks in order to develop well and thrive. I think all of these elements mirror the humanistic requirements that are needed to help someone who has a diagnosis of Lupus.

I designed the tree to deliberately shape into a heart with no beginning or end so that each element within the tree becomes connected and dependent on the next in order to thrive no matter how big or small.

I deliberately coloured the head of the tree person in a blue shade as I personally could often feel quite ‘blue’ in my mood and I feel that adequate mental health resource is essential to ‘Kicking Lupus’.

The idea that the tree person is placed within the shade of the leaves of the tree comes from the notion that due to my photosensitivity I seem to spend a great deal of time under the protective shade of these gentle giants. I have attempted to make the tree person sexless as I feel that at times males can be underrepresented with regards to Lupus.

I added a subtle piece of my grandfather to the tree as well – the texture on the leaves was created by rubbing a pencil over an embossed stamp on the cover of one of his old books that has been passed on to me, so my grandfather is effectively helping to protect me within the leaves.

All the words within the tree have been strategically placed so that they have meaning that relates not only to the tree but also to the placement within the tree and it’s ultimate aim to ‘Kicking Lupus’.

When developing this tree I was all too aware of the fact that on the outside for many years I looked like a fit, health young woman I wasn’t properly seen or heard by health care professionals, this led to a significant delay in diagnosis and prolonged suffering, so I have included the words ‘see’, ‘listen’ and ’believe’ for this reason. I have also written a poem about what this can feel like which I would like to share with you…

 

The Butterfly and The Hurricane

Look how she glows! Colours radiating!

Wings proudly displaying a lifetime of scars from unspoken wars,

they mingle within her unique design and become one.

 

See how she flies! She’s at the prime of her life!

Spreading her wings and sharing her finds – she’s divine!

 

All too soon, war resumes, her battle persists.

Into the dark and out of control,

she clashes with forces that refuse to desist.

 

To see her she’s dancing, it’s glorious to see,

but inside she’s fighting what can never be seen.

People pass comment on this beautiful sight,

never really seeing her personal plight.

 

Out in the open she sees other’s around,

dancing the same dance on this twisted merry-go-round.

Beautifully unique, yet tragically the same,

all caught within this cruel hurricane.

 

At times it’s power slows and her confidence grows,

she begins to believe she can fly without its control.

She tries to mend….but all too soon that familiar trend,

the vortex that consumes returns.

 

And so her beautiful, silent, war-dance continues,

looked upon by many, yet truly seen by few.

 

 

 

 

 

 

LUPUS EUROPE Uniting people with Lupus throughout Europe
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