WASHINGTON, N.C. (WNCT) It’s a Facebook group connecting thousands across the world. All with something in common. A disease called myalgic encephalomyelitis.
It affects every system of the body.
“So, imagine you have the flu with a hangover after running a marathon,” said Steckel.
That’s how she, and one-million other Americans, men, women, and children, feel every single day.
“Day to day, it’s mostly I do support group stuff. And I do advocacy and I do that mainly from my bed with my laptop and that’s pretty well where I’m at this point,” said Colleen Steckel, a Remarkable Women Nominee.
Steckel says she doesn’t leave her home very often and when she does she pays for it.
She got her diagnosis 30 years ago.
“Over time I’ve learned a lot of things about how to take care of myself,” said Steckel. “And in doing that, I came across a lot of people dealing with a lot of the same things.”
So, she decided to share what she’s learned starting with little notes.
“And I would say well, these kinds of things helped me,” said Steckel.
In 2014, she found a new way to reach more people.
“So using the support group on Facebook allowed me to take all that stuff I’ve been sharing one on one with people to reach a much larger audience,” said Steckel. “I have tips on coping with lots of symptoms. I have cheat sheets that you can hand to the doctor to help them understand what the disease is and what they’re going through.”
Doctors have a hard time diagnosing and treating M.E.
“Very few doctors understand it, very few doctors have any idea how to approach it.”
This brings us to another hat Steckel wears.
MEAdvocacy.org, a national advocacy group that is fighting for full recognition of the disease me.
Myalgic Encephalomyelitis gets lumped in with other diseases, like chronic fatigue syndrome.
Steckel says it’s not the same.
“If the doctors were aware of the info that was out there then they wouldn’t be making these terrible mistakes like telling someone with M.E. to exercise. Telling someone with M.E. to exercise is like telling a person with cancer to go smoke cigarettes,” said Steckel.
With M.E., the more you do, the sicker you get, and it causes crashes.
It can take weeks or even months to recover from a crash.
Steckel has low-to-moderate M.E. but has experienced every end of the spectrum.
“This is not an attitude thing this is literally the muscles will no longer respond to requests to move,” said Steckel.
So she does what she does for the severe patients.
“I have to care. And I want to make a difference. I want these people who should not have to be suffering like this to stop suffering,” said Steckel.
Colleen Steckel was nominated for the Remarkable Women Series by her husband David Steckel.
“I think the world should have an opportunity to hear what Colleen has to say,” said David.