Spring Break
Full Circle
Lupus forever changed Valley college grad Lindsay Little's life. Now she's working to change others'.
Matt Mullarkey-Toner
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Lindsay Little is standing in front of an empty room. She wipes a little sweat off her brow and glances toward the door. “It’ll be really embarrassing if no one comes,” she says. A nervous laugh follows.
Today is the culmination of months of thought and hard work – the first meeting of her support group for people like her, people with lupus.
It was about three years ago, just after transferring to
Little, 23, has suffered plenty of setbacks since the symptoms of her condition first surfaced – lifestyle changes, medication regiments and difficulties with jobs. This meeting was conceived as a way to be proactive – to help her and others face these obstacles.
Even if no one shows, she says, “I will not be deterred.”
DEFINING LUPUS
Little has systemic lupus erythematosus, a form of the autoimmune disease that affects her organs and joints. According to the Lupus Foundation of America’s website, 90 percent of the people who have the disease are women.
Laura Neal, president of the LFA’s chapter in
The disease makes it difficult for the body to recognize the difference between foreign substances and itself, so it creates antibodies that attack the body.
Lupus goes through easier points known as “remissions,” when the disease stays relatively quiet, and “flares,” when the disease acts up and causes damage to the body.
Little has never been through a remission period, only flares.
“I’m never completely over it,” Little said. “I’m always in a little bit of pain.”
A LIFE ALTERED
Little’s life is unlike most college students. She takes five medications daily, sometimes six depending on the pain she’s in. Rarely does she go to parties because of fatigue.
She’s been unable to keep jobs because of the pain.
On the first day of her senior year, when most students were meeting professors and students, Little said, “I was on the bus going to school. I had really bad chest pains, I wound up not going to school and instead went to the hospital.”
Little said that she had always been healthy, and it was difficult to make the adjustment to school.
“I would always feel so guilty because I missed this test and that paper,” said Little, who graduated in 2006. “I wasn’t used to always being sick.”
On a hiking trip to
“I couldn’t make it up a 10th of the way before I had to say, ‘This has taken a 10th of my energy,’” Little said.
GENETICS
Medical researchers aren’t quite sure how lupus is contracted, but there is likely a collection of genes that makes one predisposed to it.
Little’s family participated in research that analyzed the genes in her family. Her mother carries some genes that stayed dormant in her, but became active in Little. Out of Little’s seven siblings, she is the only that has those genes. She also thinks her grandmother had lupus.
“She was in a lot of pain and, hearing the stories, it sounded like she had lupus, they just didn’t diagnose it back then,” Little said.
To help with the disease, Little said that it was suggested to her that she check out a support group to find out how other people with lupus handled the pain. Upon calling LFA, she found there were only two support groups in the Valley. The closest to her
She decided to take matters into her own hands and create a support group for people who have lupus or loved ones that had or have the disease.
The LFA sent her some materials to help start the support group and she started spreading the word for monthly meetings the last Saturday of every month.
BEGINNINGS
Lindsay chats quietly with her mom, Anne, at the front of the room, still glancing at the clock.
It’s now 2 p.m., the time at which the meeting is scheduled to start.
Two of Little’s younger sisters, Tessa-Mae, 10, and Emma, 12, adjust pens on a table next to information pamphlets about the disease and a vase of colorful purple orchids.
“Hi, is this for the Lupus meeting?” someone asks from the doorway.
“Yes, please come on in,” Little says smiling. “This might be a small meeting today.”
Jeanette Ong walks up to the front of the room and sits at a table.
The meeting begins and everyone there, including Little’s family, begins to talk about who they are – including their likes and dislikes – before sharing their stories about lupus.
“We want her to feel a part of what other people have gone through,” Anne Little says. “We figured this would help.”
Throughout the meeting, Little, Ong, and Little’s mom share their own personal stories about obstacles they have faced with the disease.
Ong was diagnosed in 1989 and has gone through surgeries and a variety of medications.
“I’m glad that I’m still alive,” Ong says.
Little’s mother shares a story about when Lindsay needed to be rushed to the hospital.
“She was in intense abdominal pain,” Anne Little says. “They couldn’t find anything wrong with her so they sent her back home.”
Little remained in such intense pain that she returned to the hospital the next day. Immediately after doctors viewed an X-ray they told her that her appendix needed to removed
After the surgery, doctors later realized the appendix didn’t need to be removed. Little was just going through a flare-up that had scarred the lining of some of her organs, including the appendix.
Little’s mother said she just needed some medication to help with the pain.
That sort of difficulty of pinpointing the source of pain is something that people living with lupus often deal with.
“I hate hearing, ‘Oh you don’t look sick,’” Little said.
At the meeting they also share stories about the difficulty of finding a doctor that has some experience and specialization in lupus.
“Going to the doctor is a full day trip,” Anne Little says. “I’d say the average wait we have at the doctor’s is three hours.” The longest they have had to wait is five hours, and that does not factor in the commute from
MOVING BEYOND
As the meeting comes to a close, Little says that she intends to spread the word through more doctors’ offices.
“You hear women in the waiting room wanting to connect,” Anne Little says.
Jeanette Ong takes a few fliers and says she plans to attend the meeting again and that she will try to bring a friend who also has battled with lupus.
After Ong leaves, Lindsay and her family take a moment before they start to clean up the room.
“I mean, I’m a little disappointed, but I expected a low turnout,” Little says. “I think people are gonna’ trickle in.”
Little said she hopes that later support groups will involve nurses and other professionals to give advice on topics such as reading bloodwork and exercises that “don’t make you so exhausted you are in bed for three days.”
She also hopes that the participants feel hopeful after leaving a meeting.
“I don’t want it to be: ‘Let’s sit and cry about it,’” Little said. “I want this to be informative and empowering.”
Lindsay Little’s lupus support group meets the last Saturday of every month at
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