I’ll never forget the day when someone asked me if they could “catch my lupus” by sharing my drink. I wasn’t offended, but I was definitely concerned because it was in that short statement I realized there is a great big world out there and a large portion of it doesn’t understand what Lupus is. With just one question, the reality sunk in. There is still so much work to do regarding awareness and education of this disease.
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Having lived with Lupus for almost 20 years, I’ve come to learn that chronic illness – and everything it entails – isn’t on everyone’s radar. This is understandable. Unless it affects you, a friend or family member, why would it be? Even I can admit to not knowing the ins and outs of chronic disease before I was diagnosed. It wasn’t something that affected me daily and I had never met anyone with Lupus. But after living with multiple chronic illnesses for so long, you learn a thing or two about advocacy, in particular advocating for your needs regarding support and healthcare. It could even help others who are just starting their journey.
In addition to dealing with symptoms each day, advocation provides a fast track in education. The more you know, the more you realize there are a lot of misconceptions and myths surrounding every illness, not just Lupus. Unfortunately, Lupus has many misunderstandings and these errors can make it difficult for people like me to get proper support, medical treatment, and assistance.
And so I thought, what better time than Lupus Awareness Month to clear up some of the confusion that can often be found around the word “lupus?” As we step into May, also known as Global Lupus Awareness Month to over 5 million people living with the disease, here are 5 things I wish other people knew about lupus…
What is Lupus?
Lupus is a chronic autoimmune inflammatory disease that is sometimes referred to the “disease of 1,000 faces” because it’s so complex. With lupus, the person’s immune system essentially turns on itself and begins to attack its own tissues and organs. It commonly affects the skin, joints, and internal organs like the kidneys and heart.