Living With Lupus: ‘One Day, You Feel Fantastic, Next Day, You Can’t Move’
Sydney Evans had just returned from a hard-earned vacation in the Bahamas, a lazy, beachside break from her usual high-octane schedule: full-time work at a Washington, DC, nonprofit, a booming side business as a cake decorator, and leadership roles in her church.
Then came the morning when she couldn’t budge.
“I woke up and felt like there was a huge weight on my body,” says Evans, 36. “I literally could not move my arms or my legs. My mother had to come pick me up and take me to the hospital.”
It was the worst – but not the first – flare of unexplained symptoms Evans had been having for nearly 4 years. “I was always sick,” she says. “A lot of episodes of pericarditis, when the lining around the heart inflames. It puts pressure on your chest and makes it difficult to breathe.”
Back then, Evans didn’t know the “fancy words” that are now part of her medical lexicon. She just knew she felt terrible too much of the time. “I was having joint pain. I had a lot of bouts of pneumonia and bronchitis. I was in and out of hospitals. I didn’t have consistent health insurance, so I didn’t have a primary care practitioner who really knew me. It was easy for physicians to say, ‘You need to get more rest.’
“I was working full-time and killing it in my cake business. I vacationed a lot. That first year, I just assumed I was super-stressed out, super-overwhelmed, and maybe I did need to cut back.”
The Turning Point: A Doctor’s Question
Finally, during one of her hospital stays, a doctor said, “Have you ever been tested for lupus?” At first, Evans dismissed the notion; no one in her family had an autoimmune disease. But the doctor’s question became a spur. “After that, I started to become more intentional in trying to figure out what was wrong with me. By this time, I had insurance. My PCP, who also has lupus, said, ‘I think you have an autoimmune disease; we just need to figure out which one.’”
The results came on Nov. 21, 2017. “In the African American community, hearing someone say ‘lupus,’ there was always a negative connotation: Oh, you have lupus, that’s a death sentence,” Evans says. “There’s a lot of ignorance around it.” She made an appointment with a rheumatologist and prepared a list of questions.
She also took a deep dive into lupus research: the Lupus Foundation of America website, other medical and social networking sites. “I like to know the information and be educated. But it is overwhelming to know the information, too. Because I have learned that stress is a huge trigger for my lupus, I’ve learned to balance the info that I’m taking in.”
Evans, who lives in Hyattsville, Maryland, is director of strategy and planning for the National Association of Student Financial Aid Administrators. As an advocate with the Lupus Foundation of America, she serves on a global advisory group and often speaks about her experience with the disease.
‘Lupus Is So Unpredictable’
She told her family right away. Their support never wavered, but it was hard for them to see Evans struggling and especially difficult for her mother to witness the bad days, when Evans couldn’t twist the cap on a bottle of water or manage her own toothbrush.
“I’m the one with the disease and the one who’s trying to be strong and figure out how I’m going to live my life with it, but also having to reassure my family that I’m OK,” she says.
“As a lupus patient, one of the things I hear a lot is, ‘Oh, but you don’t look sick.’ Lupus is so unpredictable. One day, you can feel fantastic, and the next day, you can’t move. Every day, I feel some sort of discomfort or pain. Right now, I have pain in my back. When I’m flaring, it’s hard for me to get out of bed for a week.”
Evans still struggles with the fact that lupus is lifelong, that there is no cure, and that her symptoms might worsen in the future. “When I was talking with my PCP, even before I met with the rheumatologist, I knew that lupus was incurable. I’m still not really OK with that. Who wants to be on medication for the rest of their lives? They say women in my age range might have difficulty having children because of lupus. That put an emotional heavy weight on me because I would like to have children.
“I journal every day; it’s helped to be able to put my thoughts down and gain clarity on my feelings. But even writing is hard sometimes, because it hurts. I wake up with pain and stiffness. Getting dressed takes a lot of energy. Walking to the bathroom. I love the fact that I have another day to live, but waking up is the hardest part of my day.”
Adjusting to a Chronic Illness
She’s learned to recognize the triggers that cause flare-ups: rain or cold weather, which exacerbates her joint pain. Too much sun exposure. Stress. She takes a twice-daily dose of hydroxychloroquine and hopes to taper that medicine in the future.
“I think the biggest change is that I’ve had to cut back on a lot of activities. I used to hike; I don’t hike anymore. If there’s a friend’s birthday party or a baby shower, if I’m too tired or in pain, I don’t go.” Evans used to whip out two or three custom cakes a weekend; now she limits the number of orders she’ll accept.
Her weight fluctuates from 140 to 160. Her sleep is erratic. Spontaneous adventures are a thing of the past. “I wish folks understood that people with lupus don’t want to cancel plans, we don’t want to lie in bed for hours. I wish everyone knew that people with lupus don’t want to be counted out.
“I’ve had some seasons when I was really sad: Is this really my life? I still have bad days, but I don’t have a lot of those anymore. I can really appreciate what a good day is – being able to dance around the house, being able to enjoy my friends and family. I don’t take those little things for granted anymore.
“Obviously, I don’t want to have lupus. Nothing about being in pain feels good. But knowing that I’m able to help someone else with their journey – that’s amazing to me.”