Student fights lupus: ‘I feel like I’m living a torturous life’

Student fights lupus: ‘I feel like I’m living a torturous life’

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Lindsay Tubbs realizes it may look odd to others when she steps out of her handicap-parked car. She realizes that at first glance, she looks like a healthy, petite blond. But what people don’t know is that Tubbs is fighting the chronic symptoms of a painful disease that make it difficult to walk to class.

The pain began in high school. Tubbs said she noticed her hair started falling out, her face swelled and she was constantly tired. She would sleep, on average, around 16 hours a day. She was told by her doctor to give it time and, if in a few months she did not get better, to come back. The pain only worsened, and Tubbs went back six months later.

After 15 blood tests, she received the news she so desperately wished against: she had lupus, an autoimmune disease that attacks the body’s healthy tissue.

“I was scared to death,” Tubbs said. “When they first started testing me, they said, ‘you have arthritis but we don’t know what kind it is. The worst possibility would be lupus but don’t worry, you won’t have that.’ And then I did.”

The numerous doctor visits didn’t prepare Tubbs’ mom, Mildred, for the diagnosis of the disease either. Though Tubbs had been sick for some time, her mom said she was in shock the day her daughter was diagnosed.

“I was in denial,” she said. “I didn’t want to believe it. Even though we knew it was a possibility, you never think it will happen to you.”

The diagnosis also took away previous any fears Lindsay had of death. With this disease, there is no closure; no calculated result.

“I always thought, ‘I’ll get sick, I’ll go to the hospital and they’ll make me better,’ or ‘I’ll get sick, I’ll go to the hospital and die.’ And now it’s neither of those,” Tubbs said. “Now it’s ‘I’ll get sick and I’ll just be sick and be in pain.’ And it will be never ending. That’s a lot harder to deal with than the idea of dying. I feel like I’m living a torturous life.”

Dr. Kevin Latinis, clinical assistant professor of immunology and rheumatology at KU Med, sees lupus every day and said the disease is quite variable in how it affects people.

Though systematic lupus comes with painful symptoms, Tubbs said she was also worried about treatment. Since it’s “not the most common disease to have,” finding the right doctor may be difficult.

“A lot of doctors don’t have a lot of experience with it,” Tubbs said.

Statistics indicate it’s mostly women whom experience its symptoms. According to the U.S. Department of Health and Human Services, 90 percent of lupus patients are women and one in 1,000 women from the ages of 14 to 45 develop the disease.
Latinis said in general, lupus affects about 1 in 5,000 people.

“It tends to be more prevalent in big cities,” Latinis said. “Typically, it affects the African American and Hispanic population.”

Though Lafene Health Center declined to comment on the number of students with lupus on K-State campus, Tubbs said she has heard there are a total of three. However, not many students understand the severity of the disease.

Emily Vanwoerkom, Tubbs’ friend, said that before meeting her, she vaguely knew about the disease.

“But I’ve never known anyone who was being actively affected by it,” Vanwoerkom said.

For the past three years, Tubbs has been in remission for the disease, meaning her blood work has been testing negative for lupus. But that doesn’t mean she doesn’t get its symptoms.

She still sleeps 16 hours a day. She still gets butterfly rash. It still hurts her to walk.

But its also created a new spectrum of symptoms for her.

“Lupus is the type of disease where you don’t just get lupus but you get a lot of other diseases that go along with it,” Tubbs said.

In fact, Tubbs said her pain has shifted within the past year. Instead of feeling typical lupus symptoms, such as fever, hair loss and mouth sores, her pain has moved to her joints. While she said she had never experienced arthritic problems prior to this year, she suspects it is a result of the primary disease.

“My symptoms have become completely different,” she said. “It feels like my knees are broken. When I walk, I can feel the tendon snapping back; it’s awful. Every single joint in my body hurts.”

Now, Tubbs has found herself revisiting a familiar frustration: the unknown of what is happening to her.

On Nov. 16 she had a doctor’s appointment to pinpoint the reasoning behind the change in symptoms. While details are still unclear, Tubbs said they suspect she is degenerative; meaning her joints are breaking down and collapsing.

“We discovered that it’s probably a secondary disease,” she said. “That’s probably the worst part of it. Even though I’m in remission with lupus I still am popping up with another disease. It’s hard to handle.”

Latinis said one-third of lupus patients have fibromyalgia, which is a pain syndrome where the muscles and joints hurt.

“It’s very difficult to treat because it’s not very responsive to medicine,” he said.

He also said lupus can be associated with many other arthritis diseases, such as rheumatoid arthritis, multiple sclerosis, among others.

Though Tubbs often sleeps 16 hours a day, it’s being physically unable to perform daily mundane tasks on her own – such as doing laundry or driving her car – that make such a disease frustrating. On days when she is having a hard time, though, her friends and family are there to lend a helping hand.

Vanwoerkom said typically, Tubbs wants to do as much as she can by herself when possible. It’s only when she is hurting that she’ll ask for help.

“She puts on a really good front when she’s in a lot of pain,” Vanwoerkom said. “But I can usually tell because she moves really stiffly.”

Despite daily struggles to walk and complete minor every day tasks, Tubbs makes sure to appreciate the good days.

“I might not be able to go to class every single day of the week but I am going to go when I can,” she said. “And I don’t want to just give up because I have 4 out of 7 days of the week where I’m in pain because I do have those 3 days.”

Tubbs stays involved when she can, and recently became the president Young Democrats organization on campus. Though she does most of the work at home on her computer, she makes sure to attend each monthly group meetings.

Though she can’t plan when the good days will happen, Tubbs said she makes sure she does what she wants. If Tubbs feels well enough, she said she enjoys going out with her friends, even if only in moderation.

However, she realizes that if she stays out too late or does “stupid things,” her body will reap the consequences in days following.

“Unlike most college students, I really have to think about what I’m doing no matter how well I feel because it will impact me later,” she said.

Nonetheless, Vanwoerkom said Tubbs is a fun, energetic individual who always manages to put on a happy face. Her ability to remain optimistic despite the circumstances is one of the things her mom said she is most proud of.

“It’s hard for me to watch her go through so much pain and no one know about it or understand it,” Vanwoerkom said. “She’s such a strong person.”

While Tubbs realizes she resembles other students on campus, her situation is unique. She wants to reach out to those who don’t understand her disease, with the hopes that they aren’t so quick to judge next time.

“People do not understand I’m sick. I get out of my car and I look like anybody else. Nobody realizes that if I walk thirty extra steps, I won’t be able to go to class the next day. People are just blind and somebody needs to say something.”

  • anonymous

    I just read your post, and would like to say that you are really a strong individual. I myself was diagnosed with Lupus in the summer of 2011, and as a university student, who also works part time, can really relate to your situation. It can be difficult to justify being sick, and very tired, while looking healthy. I get comments such as those all the time, but it important to remember that our bodies have limits, and we must listen to them. I hope that some of your joint pain goes away, and that you continue to receive positive support from individuals such as your mom, who cares and understands what you are going through. All the best!