Fear and Hope
Last updated: July 2023
At the end of last July, I had a very difficult breakup. Just weeks later, I was in the hospital, so sick I was sure I was on my deathbed.
The aftermath of the Epstein Barr Virus
It turned out to be mono - how one gets mono at 30 in a monogamous relationship leads to some questions. My doctors said they had never seen such a bad case. Months dragged on with no improvement and worsening symptoms. Eventually, they discovered that the mono, or "Epstein Barr Virus" had triggered an autoimmune response; SLE, RA, Antiphospholipid Syndrome, and the list goes on. They were never able to calm the flare; it's been fully active and doing damage constantly for a year now.
Who will I become?
I lost all my friends, my home, my ability to work, to leave the house. My ability to read, to draw, to walk with my dog in the sunshine. All of the things that made me who I am have been taken from me. And honestly, I'm not quite sure how to live with this new version. I've always asked myself one question: What will you become, if you keep trying? Now, I'm scared. I don't know what's going to happen to me, or who I will become. I'm due to start Benlysta infusions, and as hopeful as I am for relief, I worry about feeling worse. How will I get to appointments? How will I take care of my dog, or myself? I'm all alone, and I am already struggling to get by. If the side effects are bad I don't know what I will do.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?