"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.
What is Lupus?
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:
- Systemic lupus — The most common form of lupus usually attacking at least one internal organ
- Cutaneous lupus — A variety of lupus that only affects the skin
- Drug-induced lupus — A type of lupus caused by certain medications
- Neonatal lupus — A condition that occurs when a mother’s antibodies attack her fetus
The reason lupus develops is unknown, but some researchers are still looking into the root causes for this disease.
What are the Symptoms of Lupus?
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:
- Debilitating fatigue
- Joint pain
- Swelling around the eyes, in the hands and feet, and the joints
- Sensitivity to sunlight
- Fevers
- Headaches
- Hair loss
- Skin rashes
- Mouth and nose sores
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.
Who is Most Likely to Develop Lupus?
According to the Lupus Foundation of America, lupus can affect the following people:
- Anyone — Though most people with lupus are adult women, hundreds of thousands of children, teenagers, and men live with the disease.
- Americans — Over 1.5 million Americans have lupus
- The global community — At least 5 million people are diagnosed with lupus worldwide
- Women — 9 out of 10 (over 90 percent) of adults with lupus are women between 15 and 44.
- Women of color — Women who are BIPOC are 2 to 3 times as likely to develop lupus as white women. Black women have the highest rates of lupus.
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.
Is There a Cure for Lupus?
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.
Can You Use Cannabis For Symptoms Associated With Lupus?
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.
- Inflammation
- Severe nausea
- Immune deficiencies
- Chronic pain
3 Ways to Make Life Easier for Your Loved One Living with Lupus
If you love someone diagnosed with lupus, here are three ways you can help lighten the load of living with this debilitating disease:
- Offer to help with physical labor. One of the most challenging symptoms of lupus is fatigue. Patients often describe it as paralyzing. Ask your loved one if you can help with physical labor (laundry, dishes, cleaning, grocery shopping, etc.).
- Don’t assume someone is fine just because they look okay. People who have lupus may appear healthy. Instead of thinking you know how your loved one is doing, ask them. Then really listen and accept their response, even if you don’t understand it.
- Support lupus research. Unfortunately, there is no cure for lupus. Donating to lupus research efforts — including research on cannabis as lupus therapy— is a tangible way to support lupus patients hoping for a cure or improved treatment options.
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.