By Shawn Chitnis
DENVER (CBS4) – People suffering with chronic pain rallied on the steps of the State Capitol building Tuesday as part of a national movement called “Don’t Punish Pain.” It’s a group of patients who say they are unable to get the medication they need and are the other side of the opioid epidemic.
“We’re invisible. We’re hidden in our homes and our beds and in our rooms,” said Crystal Irwin. “People don’t know what we’re going through.”
Irwin has been diagnosed with multiple rare diseases causing ongoing pain throughout her body. As a mother, she says that it is difficult for her to take care of her children.
“It’s frustrating when you are involved in their lives and you have to spend a week in bed recovering,” said Irwin.
One of many gathering at the Capitol to take part in the Denver “Don’t Punish Pain” rally, she was joined by others with similar stories of rare conditions or injuries that changed their lives.
“I wasn’t going to golf anymore. I can’t ski. All the things we live in Colorado for; hiking, going on the river. I’ll never do any of that again,” said Sonny Lawrence, another chronic pain patient at the rally.
Lawrence says he was able to work a few hours a day and complete some chores around his house. Now mowing the lawn or servicing his own vehicle are not possible. He chose to stop taking pain medications three years ago because he was unable to find a consistent source for his prescriptions. He says he moved to a wheelchair and the pain has kept him from those once common tasks.
“Walk out in 55 mile an hour traffic and get hit by truck,” Lawrence explained of the level of pain he experiences. “I wake up in the middle of the night feeling like my hands have been slammed in a car door.”
He suffered multiple injuries from accidents and has dealt with the pain since then. The impact on his family is also hard, he says he cannot enjoy activities with his children since he stopped using medication.
“It’s like having in home detention. I don’t leave my house anymore,” he said.
He wants to see a national database the Drug Enforcement Agency could use and offer cards to patients for doctors to track their treatment and prescriptions. All the patients at the Capitol said doctors are afraid to treat them and write prescriptions.
They believe that new guidelines related to the growing concerns over opioid abuse have unfairly affected them.
Besides the toll it takes on loved ones, it has hurt others from staying in the workforce. Ben Lawrence says after an accident in 2009, he was still able to maintain a job until his doctors stopped giving him prescriptions.
“It’s like I’m speaking to someone that’s not listening,” he said. “They don’t give me the medication I need to go to work. I want to go to work.”
These patients say they want to create a separation between the term “addiction” and “dependence” to medications. They feel like too often they are looked at like criminals because of their needs.
“They make you feel like you’re a drug addict,” he said.
The gathering also featured a chance to talk about people who could not attend the rally. Men and women who took their own life because they felt there was no other way to fight the pain.
“You get to the point where you’re literally like ‘Can I make it through this minute?’ and you’re not sure you can,” said Irwin.
She stopped taking medication as well because she also could not find a reliable source to keep up her treatment. Without that consistency, she says patients get hopeful about feeling better only to be disappointed when a doctor or provider will not continue prescriptions.
While she and others say the blame does not belong on doctors, they are advocating for new guidelines or exceptions to the current ones that would consider their situation.
“There’s a level of inhumanity there,” she said. “How do you know that someone is suffering so much and you just throw your hands up and say there’s nothing you can do?”