Marie has no idea when it first started, but about two and a half years ago, she noticed her stomach was hurting—but even more strange, her clothes were becoming looser. She was inexplicably losing weight, so she stopped exercising and tried to eat more.
It didn’t help—in fact, it only got worse. Her doctor couldn’t find anything wrong with her, but over the span of a few short months, she’d lost 30 pounds and started looking gaunt and malnourished.
“I saw doctor after doctor after doctor,” Marie remembered. She underwent thousands of tests and procedures, and they all came up blank. It wasn’t cancer, it wasn’t AIDS, it wasn’t a bacterial infection.
“No one had an answer for me,” she said.
Meanwhile, her health continued to deteriorate.
“I had a doctor who asked me if I had tried eating more—and I said yes,” Marie said. “And he said, ‘Just keep doing that, I’m sure you’ll be fine.'”
But she was far from fine. Marie’s weight had dropped from over 140 pounds to just 92 pounds, after which she collapsed and was taken to the hospital.
She was admitted for cachexia, or “Wasting Syndrome,” when someone keeps losing weight and muscle—even though they are not trying to. But doctors still had no answers as to why this was happening and how to cure it.
Marie had to be put on an IV to stay alive—and fortunately, it helped. She was able to gain weight and even started to look more like her old self. But when doctors decided to take her off the IV, they soon realized that her condition still remained.
She experienced another period of drastic and rapid weight loss. She tried eating more, until she was nearly constantly eating, but she also started having terrible diarrhea. All the weight that had returned was gone again—and the doctors didn’t know why.
On her quest to gain answers, Marie ended up seeing about 100 doctors.
None of them could offer much help.
“I am constantly eating, but I have lost a third of my body weight,” Marie told The Doctors, in a plea for answers.
It drastically altered her lifestyle as well, because without the nutrition her body needed, Marie was too weak to leave her home for long, and her diarrhea often kept her from being able to get a good night’s sleep. Because of the malnutrition and fatigue, she sometimes starts shaking, and she has experienced bouts of memory loss.
“I just want one day where I’m not sick—I’ve kind of forgotten how that feels like,” she said.
The recent half year that Marie spent off of the IV devastated her hopes and dreams—she used to want to start a family, but with her debilitating mystery illness, she felt it was impossible.
“It is hard to maintain hope after so long,” she said.
To Marie’s surprise, the medical professionals on the show The Doctors saw her story and wanted to help. After poring through the hundreds of pages of her medical records, they had a good idea of where to start.
They put Marie in touch with Su Sachar, a gastroenterologist, and Judy Ho, a clinical psychologist, to start some more tests and therapy.
“I don’t want to give up, I think there’s still something for me to do. I just refuse to believe I’m done,” Marie said. So she happily accepted the help they extended her—even though she wasn’t sure what to expect.
Marie admitted that she could not remember what life without the illness was like. The wasting disease was literally all-consuming—it had become her life. At times, she felt at peace with that. In a way, it was now her identity.
“Hope is still kind of hard for me to understand … I don’t even know what that would look like,” she said.
But when the Doctors invited her onto the show, they told her they had very real answers.
It turned out that Marie’s disease was so hard to pin down because she actually had many issues. They found problems with her pancreas, a strain of E. coli in her gut, and various other ailments due to her malabsorption of different nutrients.
Marie was told what she had was a “very long list of real medical problems,” but it was “undeniably a real medical disorder—and actually a number of overlapping disorders.”
They also discovered that although her illness wasn’t psychologically-driven, Marie had a lot of fear and doubt related to her belief in her own recovery.
“I’ve become so insular and my life has become so small,” she said. “[The condition] is everything that I do, it’s everything I talk about.”
Tears came to her eyes after listening to the doctors list treatments and supplement plans that she would need, and she realized that life without the illness was a tangible possibility.
“Maybe I could get a job—maybe I could get a hobby. I don’t know what’s next,” she said.
“I don’t know how many times I’ve heard ‘No,’ or ‘I don’t know,’ or ‘You’re beyond what science can help, we can’t do anything for you,” Marie said. “And to hear ‘Yes’?”
She was overwhelmed with joy and hope for the future.
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