If you’re one of the 1.5 million Americans living with lupus, then you know how unpredictable and frustrating its symptoms can be. They’re quite tricky, actually, because they have the uncanny ability to mimic other conditions that can affect any part of the body at any time, both inside and out.
Like many autoimmune diseases, lupus affects more women than men. According to the Lupus Research Alliance, 90% of those diagnosed are young women between the ages of 15 and 44 and the chronic illness is three times more prevalent among Black women than non-Hispanic white women. What’s more, the agency also notes that African American women with lupus die up to thirteen years earlier than their white counterparts.
Considering the implicit bias and racial disparities in healthcare — some doctors don’t take Black women’s concerns seriously, for example — they create frightening scenarios that might control the fate of those Black women diagnosed with lupus because its signs are often vague and nonspecific. These women sometimes appear healthy, so their complaints may be viewed as minor and unimportant. Additionally, while there is no form of treatment that can cure lupus at this time, the drugs that traditionally manage it can come with serious side effects for some people.
The good news is although lupus is a lifelong disease that can affect numerous areas of your life, many people live long, healthy lives. From lessening symptoms and reducing organ damage to preventing flares, experts say you can take steps to effectively cope with its challenges.
Don’t Ignore Your Body
According to the Hospital for Special Surgery, 61% of those with lupus say they do not feel refreshed after a night of sleep. While we know adequate relaxation is one of the most valuable activities we can engage in to stay healthy, for those with lupus, ignoring their body’s message to rest can lead to persistent, severe fatigue and cognitive dysfunction.
If you’re feeling tired, experts advise you to please rest, even if it means saying no to obligations and being more flexible with your schedule. They also recommend incorporating some movement into your daily routine. You don’t need a full, unabridged workout; light walking and stretching can make a huge difference in staving off muscle weakness while encouraging restful sleep.
Learn to Identify and Manage Triggers
A big part of the journey to managing the symptoms of lupus is to discover your own personal triggers so you may track your flares. Rheumatologists recommend making notes about what is happening in your life at their onset as an efficient way to create and monitor your own personal data. When you review them, you’ll likely notice patterns and can pinpoint which triggers to mitigate and ultimately avoid.
Remain in Command of UV Exposure
When it comes to protecting our skin from the damaging effects of the sun’s ultraviolet rays, we know how to safeguard ourselves with the proper products and clothing, but for some people with lupus, UV exposure from artificial light in common spaces like offices and supermarkets can be just as painful and damaging as spending too much time outside in the sun.
Per lupus.org, photosensitivity is common in people with lupus and UV light can also activate flares that can bring about symptoms like severe joint pain, tingling, fatigue and numbing. Wearing a liberal amount of sunscreen that provides broad-spectrum protection against both UVA and UVB rays and protective clothing and accessories made with tightly woven fabrics are useful. In addition, choosing indoor light sources with low intensity, covering fluorescent and halogen bulbs with shields that filter out UV rays, and using UV-blocking shades to cover windows are a tremendous help.
Make Natural Food Choices
Although there is no specific diet that treats lupus, the Centers for Disease Control and Prevention notes that lupus raises your risk of heart disease and osteoporosis. Eating a range of nutritious foods that include fruits and vegetables (with a focus on calcium-rich options like leafy greens), whole grains and lean protein can help lower your risk. They also advise to pay attention to how you feel when you eat and take notice of which foods that may cause your symptoms to return or worsen, so you may immediately eliminate them from your diet and improve your overall results.
Most people with lupus avoid the sun, so they may typically lack vitamin D. Oranges, eggs and salmon are solid sources, but if you’re vegan, consulting with a doctor for proper supplementation is best.
Explore Medical Alternatives
Research has found that complementary medicine like acupuncture, meditation and biofeedback (a type of mind-body technique used to control some of your body’s functions, such as your heart rate, breathing patterns and muscle responses) can relieve pain and stress when used alongside traditional lupus treatments. But, it’s important to talk to your doctor before trying any alternative treatments for lupus to avoid triggering or exacerbating flares.
Know Your Medicinal Options
Lupus can cause many different health challenges and there are numerous medications to treat it. From immunosuppressants that manage the immune system and antimalarials that assist in reducing autoantibodies to steroids and non-steroidal, anti-inflammatory drugs to help to combat pain, the options are vast. The variety also allows for customized treatment plans that work for you.
Be Your Own Best Advocate
When you have lupus, self-advocacy is critical, as it enables your doctors to treat and care for you effectively. By doing your research and gathering as much information as possible about what you are feeling and what is happening to your body it enables you to work together with your doctor to establish the right combination of medication and if any alternatives are beneficial.
The Final Takeaway
It is not known why lupus is most common in Black women. Some scientists think it is related to genetics, but research already proves that hormones and environmental factors also play a significant role in its development.
While it is not possible to self-treat lupus, you are the most important component in the treatment of your lupus.
No one will ensure the best quality of care, the most effective communication and protect your rights better than you.
