This diagnosis was one of those that put me through the stages of grief. You start out as one person and you end up as a completely different person on the other side, and there are so many things that you’re used to that you can do that are taken away from you when suddenly you have these new limitations.
I was diagnosed at 34 and have lived with it for 15 years, and right now I’m living my best life. But if I look at Toni that he was diagnosed in 2007, I wouldn’t have thought that he would be here now, especially with neuropsychiatric lupus.
I was suffering from hallucinations and delusions, and my mom came out to be my caregiver. She later told me that one day when we were driving to my infusion, I jumped out of the car at a traffic light and tried to strip naked in the middle of the intersection. I don’t remember, but there were so many different impacts that lupus has had on me.
I have also PTSD of my service, but having lupus has caused severe depression. I have had four suicide attempts, all related to lupus because I felt like so much had been taken from me: my marriage, my career, and almost my life (with my kidney disease). People don’t realize the mental toll it takes not only on the lupus patient, but on their family and friends as well. As it is a chronic disease, there are good days and bad days.
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