How do you break it down when people ask you “what is lupus?” I assume if I go into detail people get bored and tune out so I stick to the basics when explaining what lupus is: its an inflammatory disease where my immune system attacks its own tissue (my body); it’s a chronic condition with no cure. I like to mention that there is nothing basic about lupus though.
Each person I have every met with Lupus has been affected differently. So while you may know a friend who *appears to be functioning fine and living life normally on no medication, there can be a person of the same age who is suffering immensely because of it.
My own lupus journey has had its ups and downs. While I appear to be doing ok on the outside, ny journey has seen dark days. I have three kids who I do still go on walks with and play games with them, but there was a time I was in a wheelchair and my oldest had to help me do simple tasks like walk to the bathroom. I go Monday through Friday to a full time job but I went through a two year period where I was not physically or mentally able to work a job
I say all of this to say, if you are new to being diagnosed and you have only heard horror stories of lupus fear not! There are medications that can keep symptoms at bay and some people can live well with no medications. Some people are able to control their symptoms with diet changes and are content with that. I would also like to point out that Lupus is not to be misunderstood. If you need medication to sustain a normal life then that’s ok as well. I take pills daily that if I miss a dose I will be struggling and in extreme pain. So don’t judge ones Lupus journey based on another’s. We are all different. We are all living this Lupus one day at a time.
Rosadela Durruthy is founder of She’s Got Lupus, a non profit organization aimed to improve the lives of those living with chronic illnesses by advocating for mental health, healthy living and raising awareness.