Having Lupus can feel lonely and scary, often our GPs have no idea about it and we can’t always get to see specialists in a timely manner. It seems Lupus is very misunderstood and pushed to the side. So how do we get more awareness about this chronic, sometimes life-threatening illness?
Lupus Awareness and Charities.
Did you know that Lupus has its own awareness month? Did you know that there are many Lupus charities that raise awareness and fund research? The Lupus community is active and working to raise awareness and support for those with Lupus.
Lupus awareness month.
Lupus awareness month is in May for the USA and October for the UK. It’s a time where the fundraisers are done and Lupus is brought to the forefront. You see it on social media and Lupus gets talked about! It’s a great time to add your voice to the others so our message is out loud and clear!
Sharing your experience, whether you are a sufferer or a carer, your experiences can help fellow Lupies/carers and inform people who have no idea about Lupus.
It is also a great time to help fundraise for vital research into treatments. Whatever you choose to do a coffee morning, climbing mount Everest, a run, walk, crawl! Getting your head shaved, hair dyed anything goes!
Why do charities use a butterfly in their branding?
The Malar rash is a symptom, some people get with Lupus. It is often called a Butterfly Rash because it resembles the open wings of a butterfly, it spreads across the nose and cheeks.
Also, butterflies are symbols of renewal and growth. We often look at butterflies and see the incredible transformation they go through so it makes sense to use a butterfly as a Lupus symptom. When you have Lupus you do have to transform into someone different from before, we often can’t continue with our lives just as they were before we got sick but it doesn’t mean our lives can’t be beautiful! We often have to go through a time of darkness before we emerge understanding better how to cope and deal with our illness and still live a productive, meaningful life… whatever that looks like to us.
Why is ‘purple’ the colour of choice for Lupus branding and fundraising?
Someone or some people chose the colour purple to represent Lupus and to use in its ‘branding’. But why purple? Incidentally, it is also used for fibromyalgia.
“On purple days I’m sad, I groan, I drag my tail, I walk alone,” wrote Dr. Seuss. This is a quote from Dr Seuss’ book ‘My Many Coloured Days’ It seems to reflect how Lupus can feel perfectly. But it is not the whole story…
Purple is made by combining blue and red. Blue is a calming, cooling serene colour, red is a passionate, raging, active, hot colour, so combining the two creates purple a warm, strong, powerful, spiritual colour it calms the nerves and the mind and signals strength and determination to be strong and resilient. Purple also used to be reserved for royalty as it was so expensive to produce.
I love both the Dr Seuss reference and the symbolism associated with purple! Yes I get sad, yes I drag my body around (I don’t have a tail!), yes I groan and moan and yes I often feel alone because no matter how supportive your family and friends you alone have to deal with it! They get to take breaks, they get to sleep well and feel rested, they get to make plans without having to evaluate everything else going on and then even after careful planning, resting etc have to cancel sometimes just because of a random flare!
But also, purple symbolises our strength and determination to press on, to stand tall, to fight the urge to just lie down and give up … and purple symbolises rest and calmness, strength and dignity… purple is a great colour for us Lupies.
Charities and websites supporting Lupus.
There are heaps of charities and support groups out there and also on social media, you can find groups to join for support and information.
We can be our own advocates for this disease by being clear with our medical team, asking questions, and pushing for the answers. We can raise awareness, we know all about Lupus but many people haven’t even heard of Lupus. We can flood our social media with facts and information on Lupus awareness days, we can do all these things without becoming a lupus bore targeting specific times or topics. For ourselves, we can join support groups, in person or online, and get the support we need to keep moving. I only joined two support groups as it can get a bit overwhelming for me to be in too many!
Supporting charities helps to support research into this complicated, debilitating disease! So raising their profile ultimately helps us and others like us. So wear purple with pride on lupus awareness day, splash butterflies all over your Facebook, make butterfly cakes for a bake-off, whatever you do let people know about it, share stories of celebrities who are battling lupus, get the word out, get the support you need and help fund further research.
Remember how powerful the colour purple is, how transformational the butterfly symbol is, and stand firm. We got this!
Extract from the poem…
DON’T QUIT – by Edgar A. Guest
When things go wrong, as they sometimes will,
When the road you’re trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don’t you quit.
So stick to the fight when you’re hardest hit –
It’s when things seem worst that you mustn’t quit.