16 Our Voice / May 2014
One on One with Mentor Deeva Allen
1
As a survivor of Lupus, what do you believe is your hardest challenge?
My hardest challenge has been to get the balance on the limitations it has placed on me and my family, & the impact it has had on my body, without being defined by it. Going from being an active career woman to being bed ridden on bad days has been hard to come to terms with. I have had Lupus 8 years now, I'm much better @ dealing with flares & new Symptoms. Living with lupus is a long & painful journey, but habits of a lifetime can be hard to change so I still occasionally overdo things & pay the price.
2
Do you feel that the Lupus Organizations have received the same mass distribution of information as say the Cancer society (if not) why?
Cancer is a scary disease, It took both my parents & can affect anyone and without radical or early treatment the outlook is never good. It is right up there with heart disease as the western world's top killers, so understandably it is at the forefront in the media & information distribution. Lupus is known as the invisible illness, the symptoms can be vague & its hard to diagnose, People always use to say to me 'You don't look ill' & can dismiss you as just being lazy . I had no idea what lupus was until i started getting symptoms & did some research. Since then, there has been more awareness of lupus, but still not enough in my opinion.