Jessie DeDecker has dreams of going into theatre.
Lori Chapo-Kroger is a former ICU nurse.
They’re two women at two different stages in life. However, they share a similar struggle few can relate to.
That struggle is chronic fatigue syndrome or myalgic encephalomyelitis (ME).
“I worked full-time, and I worked midnights and I lost my job when I got this, because I just couldn’t keep up. The more I tried to act normal, the sicker I got,” Lori Chapo-Kroger said.
DeDecker said she had to drop out of high school because of it. For both, CFS started as a mystery illness.
A virus affected their bodies, leading to a wide range of symptoms, including headaches, sore throat, and loss of memory. Others include unrefreshing sleep, postexertional malaise, and tender lymph nodes.
Ultimately, simple tasks leave both feeling extremely tired.
“My whole body is just tired, and sometimes my muscles ache and my joints ache and I, I literally feel like sleeping for the whole day,” DeDecker explained.
“And it takes years to get diagnosed. It took me three years to get diagnosed. That’s the whole thing. There’s very few experts,” Chapo-Kroger said.
According to the Centers for Disease Control, about 17 million people have the disorder worldwide. About one million in the US have it. In West Michigan, about 8,000 suffer.
“But, the sad part is, about 84% of the people are not diagnosed,” she added.
Both women said there’s a stigma that comes with the illness.
“That you’re just lazy, that you’re depressed. Some people have a very hard time believing this is a real illness and unfortunately some doctors don’t believe this is a real illness,” Chapo-Kroger said.
They said it’s very much real, and knowing their physical limitations is the key to managing an illness with no known cure.
“I’m not going to let it stop me. I’m going to go to college, like I said, I’m not going to let it stop me,” DeDecker said.
Treatment for individual symptoms is an option, according to the CDC. Diet and supplements play a role. Also, patient history, physical exams, and routine laboratory tests are part of the process.
Chapo-Kroger runs a support called CFS Solutions of West Michigan. It can be found by clicking here.