Living With Lupus: How to Embrace Life With an Autoimmune Condition
Key takeaways:
Hayley Chamblin, 23, was diagnosed with lupus in August 2021.
She stopped working as a veterinary technician (vet tech) and now teaches high school biology, which is easier on her body.
She’s still learning about her condition and encourages others to find support and be patient.
Hayley Chamblin teaches high school biology in San Jose, California. She’s a diving and water polo coach, too.
None of this is what the 23-year-old thought she’d be doing after college.
Hayley earned a bachelor of science degree in biology from Mills College in Oakland, California, in May 2021, and then worked extensively as a vet tech. She loved surgery and was studying to take the admissions test to attend medical or vet school.
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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:
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• 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.
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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.
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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.
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Her systemic lupus erythematosus (lupus) diagnosis changed all of that.
Being diagnosed with lupus gave Hayley answers about her health, set her on a new career path, and forced her to embrace skills like time management. She’s also learning to be comfortable with who she is and what her body needs.
A long road to a lupus diagnosis
Growing up in Illinois, Hayley always had unusual and unexplained skin symptoms. Things got worse in her 20s. Her fingers swelled. Her hands hurt. She broke out in weird skin rashes and hives, especially in the sun.
“I was confused about this because I’m a swimmer, and I spent every summer as a lifeguard, and I’m constantly in the sun,” Hayley says.
A visit to the allergist in January 2021 led to some abnormal blood work and a referral to a rheumatologist. Once she settled in California, she received a lupus diagnosis in August 2021.
“The idea of having an autoimmune disease is kind of surprising, but it’s nice to have an explanation for all of these unsolved problems over the years,” Hayley says.
Changing career plans because of her condition
When Hayley moved from Illinois to Fremont, California, she started a job as a full-time vet tech. She loved the work, but her body didn’t.
“My hands were like claws at the end of the day, and I had to take off for lots of doctor appointments and being too sick,” Hayley says.
She went on medical leave, got her diagnosis, and started rethinking her life’s plan.
“I really enjoyed surgery as a vet tech,” Hayley says. “That was my favorite thing about medicine, but when your hands are not working too well, surgery is not the thing you can do.”
As she explored career options that wouldn’t be too tough on her body, Hayley landed a job as a high school diving coach. The school also needed a water polo coach for the fall.
Her rheumatologist advised her not to work outside because of her photosensitivity, a symptom of lupus.
Hayley investigated substitute teaching and found work as a high school biology teacher. The school brought her on to complete the semester, and she hopes to be a full-fledged teacher next year.
“I had to rethink medicine, but I could go to grad school for biology with a focus in education,” Hayley says.
Her mom, Robyn Chamblin, encourages Hayley to consider becoming a physician’s assistant. Expanding her biology knowledge could lead down that road in the future, Hayley says.
Changing her job and career plans is just one way Hayley manages life with lupus.
Managing flares and unpredictable symptoms
Some days are better than others. Hayley says she doesn’t know when a lupus flare will occur, which makes managing symptoms tough.
One day, she might wake up and find it physically difficult to get out of bed. Sometimes her neck feels too weak to hold up her head. On another day, Hayley may feel extreme back pain.
“I always hope that whatever happens, that it’s on a day when I don’t have to be at work super early,” Hayley says.
Hayley’s understanding of biology and medicine does help her navigate this new part of her life.
She’s read the lupus research and studied how different medications interact and what treatments might be best to try.
“It’s fun talking to my doctors. They know I understand, and I like talking about the science with them,” Hayley says. “At least it makes my visits entertaining.”
Frustrations because of having an autoimmune disease
Lupus causes multiple frustrations for Hayley. Two of the biggest are the way the condition impacts her work and the fact that she often doesn’t look sick.
“You never know when you will have a flare,” Hayley says. “It always seems to be the day that you have a big lecture or presentation.”
Her employer is aware of her lupus condition and is understanding, Hayley says. But she sometimes feels they might prefer someone who doesn’t have to miss diving practice for a provider’s appointment.
“But I also know they can’t discriminate against me because of my lupus,” she says.
Autoimmune conditions like lupus often present without obvious signs of disease. That leads to others thinking someone is just lazy or stressed, Hayley says.
She knows that many people with lupus find support from others living with lupus through Facebook groups about autoimmune conditions.
“My family is very supportive, and my best friend has celiac disease, so she understands,” Hayley says.
She also finds comfort from Enzo, her dachshund-chihuahua mixed breed dog.
Managing medical costs
Hayley takes multiple medications. Her diagnosis is still new, so each provider’s visit brings tweaks to her treatment.
Her prescriptions include:
Arthritis medicine to help with inflammation
Azathioprine, an immunosuppressive medicine
Hydroxychloroquine to protect her organs from being damaged by her immune system
Meloxicam for pain
“I have a nice little pill thing, like my grandma would have, with the days of the week and hours on it,” Hayley says. “I need to take meds three times a day.”
Her health insurance plan covers a good portion of her costs. Hayey says she recently switched pharmacies to reduce her medicine copays, which previously totaled $195 a month for four prescriptions.
“I can’t afford that every month on top of doctor visit copays,” Hayley says.
She also created a budget and set aside between $150 and $170 a month for healthcare. It covers her medications and two provider visits a month, with her primary care and rheumatology doctors. But the budget assumes no visits to the emergency department.
Silver linings of a lupus diagnosis
A lupus diagnosis did bring some positives into Hayley’s life. Her diagnosis helps make sense of all the weird things going on with her body. While there’s no cure for lupus, Hayley’s treatment helps manage her symptoms.
And she’s learning time management.
“I’ve always been a procrastinator,” Hayley says. “But I’m trying not to do it as much, because if I wake up and I don’t feel well, then I don’t have time to do what I was going to do.”
Time management skills also help Hayley take her medications as prescribed and set aside time to exercise, stretch, or walk to manage pain and inflammation.
Learning to live with lupus
As Hayley adjusts to life with lupus, she wants to share what she’s learned so far with others who are newly diagnosed. She offers these tips:
Advocate for yourself
Be patient: getting a diagnosis takes time
Develop a support system
Don’t isolate yourself
Educate your employer about your condition
Seek accommodations from school or work for scheduling provider appointments
Use support groups to get information and learn about potential treatments
Hayley sees hope in the ongoing research efforts for lupus. And thanks to actress and singer Selena Gomez — who talks openly about her kidney transplant from lupus complications — more people are aware of the condition, which helps everyone, Hayley says.
“Especially people around my age,” she says, “they understand it a little more and it helps not to have to explain it to everyone every time.”
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