Give Me My Life Back, Lupus
Last updated: September 2022
I want my old life back. Yes, I want my old life back. I want to be able to work and come home. I want to be able to help my husband provide for our family without getting sick. Why should lupus determine whether we can do things with our life?
Imagining life without lupus
Sometimes I wonder what my life would be like if I did not have lupus. There are so many ways lupus has drastically changed my life. Now that I decided to go back to school, I put on my big girl pants and wanted to see what online school life was like. It was more convenient than I ever thought. I can work on my own time. I have a full week to do my work how I want on my time. The work to me is so much easier, and I can be a full-time mother to my daughter. But sometimes, I look past all that and say, "what if I can work and be a better person for my daughter?"
The financial strain of lupus
Financially, lupus is starting to put a strain on me because sometimes I cannot afford my simple lifestyle. The money the government gives you to live off will not even cover rent in the society we live in today. When I started school, I was determined to finish for a better life for myself and my family. I know when I graduate and start working, the money will start coming in. I told my husband for the first time in years that it felt good to be back in our own place, and he said yes, it does. Lupus took that comfort from us. Lupus changed me and my spouse's life. He had to grow up even faster at a young age to help take care of me, and I completely appreciate him for that.
The road back to self-love
I met a woman, such a beautiful woman, who lost her battle to lupus a few years ago. Her name was Kay, and she made me want to keep living. She didn’t experience nearly half the things that I have, and she remained strong and lived each day like it was her last, and I live for her.
When I lost everything, I mean I lost everything. Self-control, dignity, self-love, and sometimes I could not recognize myself. I wanted to find and love myself again. I wanted to gain that control back. It took me at least 5 years to gain that control back. That is how long it took me after a kidney failure.
Sometimes it takes people way longer to get back on their feet, and I completely understand because I went through it. I wanted to show my daughter that I could provide for her without needing any type of help. It might not mean much to others but it means the world to me. I know that I am not alone in feeling this way. So many people that I met lost everything. They were about to graduate college, and something happened. Lupus happened.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?