Life with Lupus 22 Years & Counting
Last updated: February 2023
Living with life after finding out I had lupus has changed my life for the worse.
My family life is not what it used to be, and my husband acts as if I am always lying. I have lost many friends and family members. No one seems to understand my ups and downs. Everything is downplayed when it comes to my illness. I have lost myself. I feel so alone and incomplete. It took me many years to be diagnosed finally, and then the real roller coaster started. I think that this illness has taken control and a hold of my life. Thanks to having grandchildren I think I have somewhat of my life back.
I often hide my feelings and emotions. I am deeply depressed with no way out. I have no one to talk to, I don't feel that therapists are listening to me so I don't reach out. The only person in my life that I could depend on has passed away, leaving me with a feeling of hopelessness. I just do nothing. I have no outlets and don't really know what to do at this point but to continue to pray and try to live life the best I can.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?