What’s it like to live with Lupus?

Lupus is an unpleasant little disease that drains the life out of your body and time out of your life.  It can result in frequent hospital visits, constant tests and enough medication to make you rattle.  It can cause teeth-grinding levels of pain, uncontrollable exhaustion, terrible brain fog, facial disfigurement, dark thoughts, loneliness and an immense feeling of loss.  And that’s just the start.

In short, Lupus is a disease that can rob you of the life you planned to lead.  Future plans have to be reassessed, expectations lowered and energy levels micro-managed down to the very last ‘spoon’.

This may sound like a rather dramatic synopsis, but it isn’t.  It’s actually the harsh reality many Lupus sufferers have to deal with every single day.

On a brighter note however…

A couple of decades ago a SLE was regarded as a death sentence, as many people died of an associated complication within just a few years of being diagnosed.

Luckily for those of us who have it now, advances in treatment mean the outlook is much brighter, with the vast majority of sufferers looking to have a normal or near-normal life expectancy.


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