Thursday, 27 November 2008

Getting your head around lupus

Living Well with Lupus is all about doctoring the way you think ... 

This analogy, to which you may relate, is one that I devised in the middle of the night when I was suffering from steroid-induced insomnia at a time when my lupus was very bad and had started to take its toll on my naturally positive and cheerful disposition:

‘Imagine that your body is your ‘house’ and ‘home’. ‘You’ (your soul and being) live in your house. Lupus visits your house. Sometimes he is a slightly irksome visitor that doesn’t stay long although it is a big relief when he has gone, other times he is a psychotic and vicious squatter who has gate-crashed and refuses leave. Either way, he always has a key. The damage he does to your ‘home’ can range from minor misdemeanours to reeking devastating havoc. As an occupant of the same house, the more damage he does the more it starts to affect you. It wears you down. Your personal living space is violated. At a certain point the damage can go beyond the ‘bricks and mortar’ of your house (your body) to the occupant within (to ‘you’, your ‘core being’). This is when it starts to get personal. Whilst the builders, decorators and cleaners (medical professionals) can deal with the physical repairs ... but it’s up to you to fix the emotional damage for yourself’

In the introduction to his fabulous book ‘Don’t Sweat the Small Stuff’ (a personal favourite of mine so sorry if I end up harping on about it!) Richard Carlson quotes William James:

The greatest discovery of my generation is that a human being can alter his life by his attitude

This insight is critical when working out how to get by as best you can with lupus because, let’s be honest: quite frankly having lupus is rubbish and something no one in their right mind would choose. In fact, because the word ‘lupus’ is the Latin word for ‘wolf’ it has often occurred to me in my darker moments that it bears a striking similarity to the duplicitous wolf in the fairytale ‘Little Red Riding Hood’. Lupus is the kind of evil character that would eat your Granny, disguise itself and then try to eat you too! After all, it is widely known as ‘The Master of Disguise’ and the ‘Disease with 1000 faces’.

But really this leaves two choices for someone with lupus: allow it to ‘eat you up’ and essentially dominate your life, or adopt a positive attitude and learn to manage and live life well in spite of it.

Living Well with Lupus is for anyone interested in option 2.

The whole Living Well with Lupus project is dedicated to exploring the emotional and practical problems ‘loopies’ encounter and how to develop the best attitude and behaviour to overcome them, so we hope you will find (and contribute) lots of ideas and details as it goes on. In the meantime, here are ten key overarching mindset ‘gems’ for ‘getting your head around lupus’ (many of which came from the lovely ‘loopies’ in our research) that offer a great starting point for ‘loopies’ far and wide:


  • Whilst always being mindful of lupus, live around it; not by or through it
  • Focus on making the most of what you can do, not what you can’t
  • View yourself as a person with a chronic illness rather than a chronically ill person
  • When it’s bad remember that "It's just a moment. This time will pass"
  • Use creative ways to work around the obstacles the lupus presents and be open and flexible to making changes
  • Find your ‘inner-hippy’; being chilled is one of the best things a ‘loopie’ can do to help themselves
  • Be kind to yourself. You are only human. You can only do so much and remember no one is perfect (and anyone who was, would be decidedly dull anyway ... which arguably makes them also less than perfect like the rest of us!)
  • Learn to be a ‘tough cookie’ by talking yourself ‘up’ when you start feeling you are being defeated
  • Energy is limited and a precious commodity for a ‘loopie’. Use it wisely.
  • ‘It’s good to talk’; find someone who will listen to you when you need to offload