"You don’t look sick." The four words Susan Baumgarten said she hates to hear.
Baumgarten, like 1.5 million other Americans, has lupus, a chronic autoimmune disease.
In Lupus patients, the immune system, normally tasked with producing antibodies to attack foreign intruders, instead produces antibodies that attack healthy tissue, according to the website lupus.org
These attacks cause painful episodes and inflammation in sufferers—pain and sickness that Baumgarten says isn’t always apparent to people without lupus.
“I have a placard so I can park in the handicap parking,” she said. “I remember I had it up and I went to the grocery store and I came back to the car with my kids and this lady started [expletive] at me. She’s like, 'what right do you have to have a handicap placard? You don’t look like you are sick; you don’t look like anything is wrong with you.'"
"I don't expect people to understand, but to just have compassion. Just being chronically ill, you have depression and it brings on great sadness. You have to deal with so many things. It’s just hard having to get out of bed some mornings."
The mother of two was diagnosed with lupus in 2000. Baumgarten said a lot of lupus symptoms started when she reached puberty and began having a menstrual cycle. She wasn’t diagnosed until she was 39 years old.
“It had taken me years to be diagnosed with lupus—years,” she said. “I’ve been sick pretty much since I was a child.”
There is no one test for lupus. Doctors determine if someone has lupus by administering blood tests and taking into account the symptoms a patient experiences.
Six years before learning she had lupus, she was diagnosed with breast cancer and underwent a lumpectomy.
“I’d mentioned to my oncologist all these side effects and he was like, ‘anything else?’” she said, laughing. “Everything from my big toe hurting, to fevers, to chronic infections, all over joint pain, migraines; it was horrible.”
Baumgarten says she also has from osteoarthritis, rheumatoid arthritis, fibromyalgia, multiple sclerosis (MS) and a host of other conditions.
She said her MS symptoms can overlap those caused by the lupus. This was confirmed by her neurologist, Baumgarten said.
Of all the conditions, Lupus has been one of the most problematic because it is chronic, meaning the symptoms persist for weeks or months and then disappear, Baumgarten said.
The word lupus is Latin for “wolf."
“I’ve been in and out of the hospital so many times. I’ve been in the hospital a total of six months since I was diagnosed,” she said. “I have like, nine doctors.”
She has a nephrologist because she has kidney involvement, Baumgarten said. She has a neurologist for the MS and a brain lesion that was discovered. She has an oncologist and a hematologist for the cancer and an internal medicine specialist.
Baumgarten also has a medical resume she carries with her to show new doctors and for emergency room visits.
At one point, she was taking some 48 pills each day, Baumgarten said. She had to keep a journal to document what times she took what medicines and to chart the side effects, she added.
“I’m now off all the medications,” she said. “My doctors have said (lupus) is one of those diseases you just have to ride out. To tell you the truth, I’m tired of being a guinea pig.”
She tries to eat healthy and she believes in a balance between medicine and holistic treatments, Baumgarten said.
Despite her condition she feels blessed because she was able to conceive. She had her second child about two years after her breast cancer diagnosis.
Still, she is concerned about her children, a boy and a girl now in their teens, and how her health affects them.
“They have to play caretaker,” she said. “It’s not easy having a chronically ill parent because you can’t do all the things you want to do.”
Earlier this month, Baumgarten’s daughter came home from school and sat down with her on the patio of the family’s Bristow home and talked about when times were really hard.
“You remember when I got down to 87 pounds?” Baumgarten asked her daughter who nodded quietly. “It was during the divorce. I wore a size 12 in girls. It was just stress."
She asked her daughter if she wanted to talk with this reporter about some reports she’d done at school on lupus and the teen bashfully declined.
Baumgarten said she continues to be grateful for her family and for having a great support system comprised of other people with lupus.
“Lupus is a blessing in some ways. I’ve formed some really good relationships with my fellow lupees,” she said, smiling. “You have to have yourself in the right mindset when you have this disease to stay just as positive and hopeful as you can.”