Lupus Took a Toll on Me, But My Support System Helped
Key takeaways:
At age 38, Crystal Arthur thought she had the flu, but she ended up being diagnosed with lupus.
Lupus is a chronic autoimmune disease that causes the body’s immune system to mistakenly attack its own tissues and organs. It’s often difficult to diagnose, predict, and treat.
After 10 years of ups and downs, Crystal shares how she’s gotten through it.
In the summer of 2014, Crystal Arthur had just started a new job in human resources for a hospital. She woke up one morning with what she thought was a virus.
“I felt nauseous,” she says. “I just felt fatigued and really tired.”
Since she knew she would need a doctor’s note to explain her absence to her new boss, Crystal went to the ER. She thought they could give her an IV to help with dehydration from vomiting and maybe some medication to help with nausea. She had no idea she was in liver failure and would end up staying in the hospital for an entire month.
Her case perplexed doctors, who tried to attribute her condition to food poisoning or potential drug use, neither of which was the case. (Years later, Crystal says it still irks her that anyone suspected drug use. And as a Black woman, she wonders whether that suggestion was racial discrimination. From a medical perspective, it may have been a legitimate question. But Crystal says the doctor’s bedside manner was not empathetic.)
Looking to save on BENLYSTA (belimumab)?
BENLYSTA is for people 5+ with active SLE (lupus) or active lupus nephritis on other lupus medicines. Not for people with severe active central nervous system lupus.
Do not use BENLYSTA if you are allergic to belimumab or any ingredients in BENLYSTA.
The most important information about BENLYSTA
Immunosuppressive agents, including BENLYSTA, can cause serious side effects. Some of these may cause death.
• Infections:
fever, chills, pain or burning with urination, urinating often, coughing up mucus, or warm, red, or painful skin or sores on your body. Infections could be serious, leading to hospitalization or death.
• Allergic (hypersensitivity) reactions:
itching, swelling of the face, lips, mouth, tongue, or throat, trouble breathing, anxiousness, low blood pressure, dizziness or fainting, headache, nausea, or skin rash. Serious allergic reactions can happen the day of, or in days after, receiving BENLYSTA and may cause death.
• Mental health problems and suicide:
thoughts of suicide or dying, attempt to commit suicide, trouble sleeping (insomnia), new or worse anxiety or depression, acting on dangerous impulses, other unusual changes in your behavior or mood, or thoughts of hurting yourself or others.
Before receiving BENLYSTA, discuss with your healthcare provider if you:
• think you have an infection or have infections that keep coming back. Do not use BENLYSTA if you have an infection unless your healthcare provider tells you to.
• have or have had mental health problems such as depression or thoughts of suicide.
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• become pregnant while receiving BENLYSTA, talk to your healthcare provider about enrolling in the BENLYSTA Pregnancy Registry. You can enroll in this registry by calling 1-877-311-8972 or go to https://mothertobaby.org/ongoing-study/benlysta-belimumab/
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Possible side effects of BENLYSTA
• Progressive multifocal leukoencephalopathy (PML). PML is a serious and life-threatening brain infection. PML can result in death or severe disability. Tell your healthcare provider right away if you notice any new or worsening medical problems: memory loss, trouble thinking, dizziness or loss of balance, difficulty talking or walking, or loss of vision.
• Cancer. Medicines that affect the immune system, including BENLYSTA, may increase your risk of certain cancers.
The most common side effects of BENLYSTA are nausea, diarrhea, fever, stuffy or runny nose and sore throat, persistent cough, trouble sleeping, leg or arm pain, depression, headache, and pain, redness, itching, or swelling at the site of injection (when given subcutaneously). These are not all the possible side effects of BENLYSTA. Call your doctor for medical advice about side effects.
Please see Prescribing Information and Medication Guide for BENLYSTA.
What is BENLYSTA?
BENLYSTA is a prescription medicine used to treat people 5 years of age and older with active systemic lupus erythematosus (SLE or lupus) or active lupus nephritis (LN) (lupus-related kidney inflammation) who are receiving other lupus medicines. It is not known if BENLYSTA is safe/effective in people with severe active central nervous system lupus.
It is not known if BENLYSTA, given under the skin, is safe/effective in:
• children with SLE under 5 years of age or weighing less than 33 lbs
• children with LN under 18 years of age
It is not known if BENLYSTA, given in a vein (intravenously), is safe and effective in children less than 5 years of age.
BENLYSTA IV is available as 120 mg in a 5-mL single-dose vial and 400 mg in a 20-mL single-dose vial. BENLYSTA SC is available as a 200 mg/mL single-dose autoinjector and prefilled syringe.
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After 4 weeks, her liver numbers improved. She was released from the hospital with no answers about what caused her condition, but she was ready to move on.
Finally, a diagnosis: Lupus, which is more common in Black women
By that December, Crystal, who lives in Houston, came down with what she thought was the flu. When she didn’t get better after a few weeks, she went to the doctor, who did blood work. Crystal shared her results with a friend who’s a nurse, who looked at her numbers and said: “You need to go to the ER right now.”
This time, when Crystal was admitted to the hospital, things quickly moved from bad to worse. She was completely jaundiced. Her kidneys were starting to fail, and she was put on the liver transplant list. The head of the transplant department studied her file and knew exactly what was happening. “He said, ‘I’ve seen this in Black women in their mid-30s. It’s lupus,’” Crystal recalls.
Lupus is an autoimmune disease that causes the immune system to mistakenly attack healthy tissues, leading to inflammation and damage. It is significantly more common in Black women compared with other demographics.
Lupus can lead to a variety of symptoms, including joint pain, skin rashes, fatigue, and fever. It affects organs such as the skin, joints, kidneys, heart, lungs, and brain. The severity varies from person to person, with some experiencing mild symptoms and others facing more severe health complications.
A decade of physical, emotional, and financial turmoil
For the next 2 years, Crystal was in and out of the hospital grappling with both the condition, which was severely affecting her liver, and the financial toll it was taking.
At one point, doctors wanted to put her on chemotherapy medication to trick her body into not rejecting her own liver. But it would cost about $54,000 a year.
Since her only income was from long-term disability and Social Security at that point, she turned to GoodRx and got the chemo medication for $182 a month.
“Had I not been able to get that medication, I might not be sitting here,” she says.
Then she developed hepatic encephalopathy, which happens when there is liver failure. She says she nearly died from an ammonia buildup in her brain.
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Needless to say, the last 10 years have been a physical and emotional roller coaster for Crystal, who’s now 48. She likens the ordeal, jokingly, to driving a car. “Your body is supposed to be an automatic,” she says. “And I feel like when I’m experiencing flares, it’s more like a stick shift, and I’m having to manually drive it.”
Her near-death experience was scary. But she says it also brought clarity and a spiritual awakening as she turned to Eastern medicine, such as healing energy and chakras, and eventually became a Reiki master.
“Now I help other people that are in crisis get to a stable point in life, and I love that,” Crystal says. “Helping others helps take [my mind] off of what is happening to me.”
Advice for others living with lupus
Crystal is also passionate about sharing her story to help others who are living with lupus. If you or someone you know has been newly diagnosed with lupus, she has this advice.
1. Find community
When Crystal was diagnosed, she wanted to find other people with lupus to talk with them. She asked the hospital if there was a support group. “They said they had one that met once a month, and I showed up and nobody was there,” she says. She turned to the internet. Now she belongs to a few groups that meet on video every couple of weeks to be there for one another. “That’s been helpful,” she says, because even though your family and friends love you, they may not understand what you’re going through.
2. Look for joy
During the COVID-19 pandemic, Crystal started to spend more time on her patio. “I started feeding the birds, and I made friends with the squirrels. And then I had a bunny that came. And then, for mental health, I would go down to the little lake down the street. And I have a duck [there]. His name is George. My friends now call me Snow White,” she says. The animals bring her moments of joy and peace in her otherwise hectic life. “Doctors have told me that too. Like [they] can’t always scientifically prove certain things, but the patients that have hope, that keep their spirits up, that find joy and everything, they have better outcomes,” she says. “They go into remission faster and longer.”
3. Practice gratitude
A few years ago, Crystal made a gratitude list — a list of 100 things she’s grateful for — for 30 days. “The first day, I couldn’t get to 100,” she says. It took awhile to get to 100. But once she did, she realized it wasn’t about the list as much as it was a mental health hack — a much-needed perspective shift. “I realized I was going through my day looking for things to put on the list. So I’m shifting my focus to look for things that make me grateful instead of wallowing in what’s happening,” she says. Now, when Crystal is going through a dark spot or a hard time, “I’ll assign myself a gratitude list to help shift my thoughts.”
4. Research everything
Throughout Crystal’s medical challenges, one of her biggest headaches was navigating the healthcare system — fighting insurance to pay for procedures and prescriptions she needed to save her life. She even ended up in court fighting for Social Security Disability Insurance. She won, but the process took years and money. “It’s always been this game,” she says. “Yes, of fighting to stay alive, [but] you’re also fighting to keep your benefits, fighting to keep the money to pay the bills [and] to buy the drugs. It’s a full-time job doing that.” Thanks to her knowledge from working in HR, Crystal had a head start. But for those who don’t, she says: “Research — Google is your friend. There’s so much that you can do now for free and find for free,” she says. “And because there are many people that have kind of gone through these things, if you start googling, you will find groups or people that will help you, walk you through paperwork.”
5. Don’t give up
There were dark times in Crystal’s journey when she wondered what she was even fighting for and why she was still alive, but she says she’s grateful she pushed through. Otherwise, she would have never met her two beautiful granddaughters, she says.
“I’m glad that I’m still here because I wouldn’t have been able to experience them. They are part of my why,” Crystal says. And to others who are experiencing the dark times that can come during difficult lupus flares, she says: “If you don’t quit, you win. It’s that mindset that’s going to get you through.”
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