This diagnosis was one that caused me to go through the stages of grief. You start as one person and end up as a completely different one on the other side, and there are so many things that you’re used to being able to do that are taken away when you suddenly have these new limitations.
I was diagnosed at 34, and having lived with it for 15 years—and right now I’m living my best life. But if I looked at the Toni that was diagnosed in 2007, I wouldn’t have thought that I would be here now, especially with neuropsychiatric lupus.
I suffered from hallucinations and delirium, and my mom came out to be my caregiver. She later told me that one day when we were driving to go to my infusion, I jumped out the car at a stoplight and tried to strip naked in the middle of the intersection. I don’t remember it, but there were so many different impacts that lupus has had on me.
I also do have PTSD from my service, but having lupus has caused severe depression. I have had four suicide attempts, all based around lupus because I felt like so many things 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 also on their family members and friends. Because it is a chronic illness, there are good days and bad days.