Lupus, The Invisible Illness
This is my daughter's story. My momma heart hurts for her, it truthfully breaks my heart that she has to live like this. And furthermore, it kills me that I can’t take this away from her.
Waking up exhausted
This morning I woke up exhausted and in pain. I really don’t think I have the energy to get out of bed. But if you walked into my room and looked at me laying in my bed, you would think I looked perfectly normal. You wouldn’t know that I have lupus, an invisible illness. You also wouldn't know that inside my body, my cells are attacking my organs. You wouldn’t know the pain that I live with every day. The despair I feel when my family and friends don’t understand what this disease is doing to my body.
Friendships and lupus
I used to have many friends. But lupus has caused me to lose many of them. They would text me and ask me to go out with them. But I was so exhausted I couldn’t get out of bed except to go to the bathroom. The first few times I said “No, I’m sorry. I am just so tired and I hurt everywhere.” They seemed disappointed but didn’t ask how they could help me. My friends would only ask a few more times and eventually just dropped out of my life. My heart was broken. Lupus, an invisible illness, did that.
Over the years I would watch these same friends get married and have children. That really hurt. You see when lupus came calling it brought friends. I also have endometriosis. That means I will never hold my baby in my arms. I would be invited to the baby showers, but I just couldn’t go and face them. Lupus took the family I so desperately wanted. I would beg God to tell me what I did to deserve an invisible illness, I never wanted.
Lupus affected my career
I’m a Registered Nurse with my Bachelor's Degree. I wanted to teach clinical nursing to nursing students. I had started working on my masters. But lupus was taking over my body. I would have days when I was so dizzy, I couldn’t stand up. Days every joint in my body hurt. My hair even hurt. I missed so much work that I finally had to resign. You see, lupus also took my career.
Would you understand that I once had a migraine that lasted seven months? That all I could do was lay in bed and vomit? I became a champion at vomiting and having dry heaves. My doctors didn’t have a clue about how to stop the migraine. My mom took me to the ER so many times that we quit counting. The doctors’ would say if the migraine isn’t better tomorrow then come back. My mom yelled at several doctors.’ She asked, "Why would we come back tomorrow when they didn’t do anything to help my migraine today?"
Other people's judgment
People yell at me when I use my handicap parking sticker when I go out to shop. They tell me I look fine and to move my car. But inside, my body was attacking itself. Why couldn’t anyone see that? Why couldn’t they see my pain and despair?
Support and advocacy for lupus
My career was over. What could I do as a nurse to help myself and others? I decided to educate people on what lupus was and how it affected me. I formed a group on Facebook for other people with lupus. I started writing for health agencies to help them understand what I was going through.
I was determined that lupus was not going to win this fight. I will continue to educate people about lupus, the invisible illness. If you have lupus, please join me in my fight to educate the world about lupus and the people that have it. You see, if I let lupus rule my life, then I’m losing the fight. I am a lupus warrior and I am strong. I will keep trying to help others.
Caregiving for my daughter
From a caregiver's perspective caring for someone with lupus, is like walking a tightrope. Some days are great. Other days are bad. When Amber is in pain, saying the wrong thing can make her angry. I know when she’s angry, it’s not at me, but sometimes I get the brunt of that anger. It can be mentally exhausting. That’s why as caregivers we need to have a support team that we can talk to when times are rough. We need to support each other.
Looking for caregiver support?
What topics are you most interested in learning about? (choose up to 3)