Skip Navigation
Clemente Writings

I Have Lupus, Lupus Doesn’t Have Me

Living with lupus is very painful. It’s very hard to do usual tasks without the help of my daughter. I have had lupus for nine years. I was diagnosed after my daughter was born. I’m always tired and have no energy. Walking down stairs or even opening a water bottle can cause a lot of pain. With lupus, time in the sun isn’t good for the body, my skin burns from the inside, causing the surface of my skin to have red spots. The burn shows on my thighs and sunblock doesn’t protect my skin from the sun. I get a rash known as the Butterfly Rash, which goes across my cheeks and over my nose.

The form of lupus I have is Systemic Lupus Erythematosus (SLE). Lupus is an autoimmune disease that’s incurable; it affects the organs over time and can range from mild to life threatening. The causes are unknown, but believed to be linked to environmental and genetic factors. SLE is common and more serious than other forms of lupus. Some of the symptoms include extreme fatigue, joint pain, anemia, cognitive issues, and physical impairments. With lupus, the white blood cells attack each other. Lupus affects more women than men; ninety percent of women have lupus. The illness is usually developed between the ages of fifteen to forty-four; at least five million people worldwide have a form of lupus. Lupus is found two to three more times in women of color than in Caucasian women. Ten to fifteen percent of people with lupus die due to complications. Lupus is the most misdiagnosed illness because many symptoms are similar to other illnesses.

Sometimes the pain is so bad, I think to myself that it’s all in my head, knowing the pain is there. Many times people say, “Wow, you don’t look sick, you look exhausted,” and my least favorite, “Get better soon.” What does being sick look like? I don’t know! Getting “better soon” is not an option with being in pain twenty-four hours a day, seven days a week. I don’t look sick, but you will never know the struggle beneath the surface. If I could get enough sleep to not look exhausted, that would be great.

Having lupus, I downplay my symptoms. When asked how I’m doing, I respond, “I’m fine,” or “Same thing, different day.” When I tell someone I have lupus, his or her response is, “Wow I couldn’t tell,” or “I didn’t notice.” That’s because lupus is an invisible illness, you can’t see it but I can feel it. To be “normal” again, I’d love that, as I am always hopeful for a cure.

The positive effects lupus has on me is showing me that I’m stronger than I thought I was. It has taught me what it’s like to live with a chronic illness. It’s taught me to know my limits regarding the things I do. Learning about lupus allows me to educate others, who don’t know what lupus is. I have tried CBD, which is the extract from the cannabis plant. The CBD cream helps with joint pain, and the oil didn’t feel different. However, it did help with giving me energy. In the end, I found that with the use of the cannabis flower it could be helpful with managing my pain throughout the day. I see life differently; life can change at the blink of an eye.

Living with a chronic illness each day is based on how much energy I have in the morning. The best way to describe lupus on the day to day is, to imagine putting your cell phone on the charger at night and waking up to see your phone is only at fifty percent battery life. Then having to run out of the house without your charger and less than two hours later your phone is on ten percent. Someone lets you borrow a charger but you have nowhere to charge your phone as your phone is losing battery life. Even though we get a full night of sleep, possibly pain free, we will not be energized enough to feel one hundred percent for the day. Your phone’s battery life is my energy. At the moment, my lupus isn’t as active as many other people, and I am in remission. “I have lupus, lupus doesn’t have me.”

I like to think of it as, “You never know how strong you are until being strong is your only choice.”

Maria Morales: I’m the mother of a nine-year-old. I graduated high school in 2003 and the Clemente Course in Humanities in 2016. I have taken American Sign Language. I’m hard-of-hearing. In 2010, I was diagnosed with lupus. I’m a respite provider, as well as a caretaker for a fourteen-year-old boy who has autism. 

We, Too, Are America is made possible through “Democracy and the Informed Citizen,” an initiative administered by the Federation of State Humanities Council through a grant from the Mellon Foundation.

Stay in touch with Mass Humanities

Sign up for our Newsletter