"You look fine to me.”
“Maybe you’d feel better if you had a more positive outlook on life.”
These are just a couple of the less-than-helpful responses people living with lupus may hear when they try to share how they’re feeling.
Experiencing the invisible pain of lupus can be incredibly isolating given the physical, emotional, and spiritual toll the disease can take.
Keep reading to learn more about lupus, one of the most severe, chronic autoimmune diseases impacting people — particularly women of color — today.
Lupus is a non-contagious, chronic, autoimmune disease. In other words, the illness is long-lasting and causes your immune system to attack healthy tissue instead of just infections.
Lupus can affect any part of the body, including the skin, brain, joints, blood, heart, kidneys, and lungs. There are four types of lupus:
The reason lupus develops is unknown, but some researchers are still looking into the root causes for this disease.
Lupus shares symptoms with other diseases, so it’s not always easy to diagnose. If you believe you might have lupus, keep track of your symptoms and speak with your healthcare provider right away.
Here’s what might happen if you suddenly develop lupus.
After spending most of your life enjoying the feel of sunshine on your skin, you break into an inexplicable rash and become immobilized by fatigue after spending an hour outdoors.
You think it’s a one-time event, but it keeps happening.
Over time, you tell your family and friends about your exhaustion and the stiffness and stabbing pain now plaguing your joints.
At first, your loved ones feel sorry for you. But eventually, they stop asking how you’re feeling. They start to distance themselves from you.
Living with lupus can be physically and emotionally devastating because the pain is invisible. Well-meaning loved ones may make comments (“but you look so healthy!”) that minimize rather than validate your experiences.
Lupus can present differently in every individual, but these are some of the most common symptoms:
Patients often describe experiencing lupus in waves. On some days, the waves are more like ripples. On other days, the waves come crashing. These intense symptoms are known as flares or flare-ups. Patients can’t always predict when a flare will occur.
According to the Lupus Foundation of America, lupus can affect the following people:
It’s not clear why lupus affects women, especially Black women, at such disparate rates.
But if you care about or identify as a woman of color, familiarize yourself with this relatively rare but severe disease so that you can advocate for yourself, your loved ones, and your community if symptoms present themselves.
There is currently no cure for lupus. The goal of treatment plans is to manage symptoms, prevent flare-ups, and mitigate organ damage.
Conventional lupus treatment plans include corticosteroids, NSAIDS, antimalarial medications, chemotherapy, blood thinners, and more.
These therapies are often expensive, accompanied by debilitating side effects, and prohibited during pregnancy (a frustrating obstacle given that the disease primarily impacts women of childbearing age).
Because of these challenges, medical professionals and lupus patients are constantly searching for better treatments.
More research is needed before anyone can make definitive conclusions.
Cannabis can be used for the symptoms below, which may fall under the definition of a qualifying condition in your state. Please note that every individual uses cannabis for different reasons. After all, cannabis is not one-size-fits-all! You should consult with your healthcare provider to determine if cannabis is right for you.
If you love someone diagnosed with lupus, here are three ways you can help lighten the load of living with this debilitating disease:
For more information about Lupus, go to: https://www.lupus.org
This article is not intended to serve as medical advice, treatment, or research for lupus or any of its associated symptoms. Laws governing the legality, availability, and use of marijuana vary by state.