On Special Assignment: Bozeman woman struggling with rare illness that leaves patients bedridden, doctors bewildered

Posted at 3:29 PM, May 17, 2018
and last updated 2018-05-17 17:29:41-04

BILLINGS – Before she was diagnosed with a rare, debilitating illness in 1995, a Bozeman woman painted large canvases and instructed art classes for children.

Today, due to her constant fatigue, Susan Henderson’s art is confined to the screen on her computer, where she can sit and manipulate images with the press of a finger.

"I do digital art on my computer of my Bengal cats, and I superimpose it," said Henderson.

Henderson has kept up with her passion for art from a seated position ever since her Chronic Fatigue Syndrome came on.

"I’d stand in front of the kids and I’d just forget what I was saying, and these are young kids and they’d just look at me," said Henderson.

SCL Health Dr. Janice Fordham has never diagnosed anyone with the rare condition, but is familiar with CFS.

"The thing about Chronic Fatigue Syndrome is it can come on out of the blue," said Fordham. "Patients don’t have to have any underlying condition to develop the disorder."

Fordham said CFS, which is still poorly understood, leaves patients feeling perpetually exhausted, both physically and mentally.

The little medical research that’s available on CFS indicates it occurs more commonly in young to middle aged women.

Susan Henderson and her art./ Q2 News photo.

"About three quarters of my life is in bed resting," said Henderson.

Henderson said a trip to the grocery store, even a long conversation, can push her over the edge.

It’s a reality that’s hard to bear, one that Henderson finds herself denying.

"I have to give myself permission to stop and get in bed and rest," said Henderson.

The exhaustion, which is typically accompanied by sore throat and irritability, is not the only frustrating part.

"People don’t understand, it’s experiential," said Henderson.

Henderson said her own family has suggested the illness is all in her head.

"I had one person say, if you just were spiritual enough, and just turned it over (to God) you’d get better," said Henderson.

And her condition can’t be backed up with blood work.

"When you come to the doctor’s office, you want a diagnosis that has data to back it up," said Fordham. "And this is one of those illnesses where we don’t have a lot of info and we’re still learning a lot about."

"I don’t look sick. And I hide it," said Henderson. "My thing is, I’m letting go of this urgent need to make other people understand."

Fortunately, some people do understand. Henderson has a support network she connects with by phone.

There’s no known cause or cure and no one-size-fits-all treatment. In some medical communities even, no support.

"The problem is there hasn’t been a scientific study that says this links this problem and this is treatment," said Fordham.

Henderson’s diagnosis is, in many ways, a puzzle with missing pieces.

But through her connections with other CFS patients, Henderson can find a different kind of peace.

Henderson said she copes with her condition through prayer, meditation and support groups.

A support group called Hope to Healing in Helena accepts CFS patients. You can reach them at 406-465-2773.