There are how many sides to every story? Two. There are two sides.
Recently, Bob, a Bethel Park, Pennsylvania, resident and degenerative disc disease (DDD) patient, brought something to our attention in a BackerNation discussion.
“Who else is tired of the daily TV, radio and newspaper stories about the abuse of opiates?” Bob writes. “Just once, I'd like a story about a chronic pain patient who faced the choice of either taking opiates for pain or quitting a job that provided a college education for their kids.”
Bob's been taking pain medication since October 1995. “I have had four major spine surgeries and am facing a fifth surgery. I've never abused opiates, lost them or lost my prescription. I've never lied to a doctor or doctor shopped. I am not the problem. Why doesn't someone tell our story?” the stressed-out patient says.
Bob, we are here to tell your story because honestly, it's our story too.
He says that he needs three pills a day to be a functioning member of society. “But instead, I lay in bed on the heating pad with my back locked up, in severe pain because getting my doctor to understand this is like pulling teeth,” Bob adds.
According to the Pain Management Report, “Stigma refers to the negative attitudes expressed by members of the community, including health care professionals, that result in discrimination and devaluation of the individual solely because of their characteristics.”
Whether a doctor is discussing pain management with a pain patient or a pain patient is talking to a friend, appropriate use of language is critical. Inappropriate use of language leads to negative thinking, which can impact the way society perceives addiction and chronic pain patients.
Since society at-large needs to understand the truth of what living in chronic back pain actually feels like, Bob believes that people don't get the full picture “because our stories are not spectacular disasters. Bad news sells, good news doesn't.”
“Seriously. I'm not working now because of this. I've always worked, supported my family and helped others,” Bob remembers. “And I don't get disability yet either, nor am I supported by anyone else. And the savings are almost gone. I'm about to lose my home. And all because I can't get the meds that allow me to function.”
“For chronic back pain sufferers, there is a real problem because of the abuse of painkillers in the U.S,” explains Michael Johnsen, who has been covering the business of over-the-counter medications and health issues as a pharmacy store manager prior to becoming a journalist for an online database called Drug Store News (DSN). As many as 1 in 4 Americans (approximately 11 million people) who receive prescription opioids for long-term noncancer pain in primary care settings fights with addiction and substance abuse.
“There is a stigma attached to the prescribing, dispensing and utilization of pain medicines,” Johnsen shares. “And that stigma has created an, at times, insurmountable hurdle that leaves legitimate patients suffering in silence.”
He goes on saying that the media's main focus has historically been on addicts in general and how to curtail their access to the pain medications they think they need — the drugs they crave. But, doing so creates a negative stigma that inhibits access for legitimate needs from doctors and pharmacists to the pain patients themselves who actually need them.
“The person seeking relief from pain is not [suffering] from the same disease as a person who is an addict,” reports Paul Gileno, president of the U.S. Pain Foundation. “[They are] two separate diseases. [But] it’s hard to decipher because right away [people associate] pain patients with that group of addicts.”
Gileno says that out of those 11 million who are abusing opioid medications, “We don’t know that they’re coming out of the 100 million Americans [with chronic pain] because we don’t know if they’re legitimate pain patients at the start.”
While there is certain to be some overlap, the 11 million may simply represent those addicts who have chosen painkillers as their drug of choice. It doesn't always have to mean that a pain patient is an addict just because they are prescribed a painkiller for pain relief.
Doctors are now limiting prescribing opioids for chronic back pain patients because of this stigma. They are being cautious as their reservations are warranted, however, this leaves people with chronic back pain or spine conditions in a tough spot.
“Pharmacies are either not carrying products on their prescriptions even though they have a legitimate [need], or will refuse to refill a patient's opioid prescription,” Gileno offers. He says that this can make the patient feel like they are doing something wrong.
The negative stigma associated with opioid prescriptions extends to patients themselves. Many patients worry that they may become addicted to their prescriptions despite legitimately needing the pills to relieve their daily discomfort. It's a constant back and forth, a catch 22.
“They listen to the media instead of their doctor, and forego the appropriate care,” Gileno remarks. There are options.
How to Swim
In an effort to put a stop to the stigma associated with the legitimate use of pain medicines, the U.S. Pain Foundation employed over 200 Pain Ambassadors who make up a grassroots education campaign, which you can find here, https://www.uspainfoundation.org. A pain ambassador works with their chronic pain patient to identify the patient's legitimate needs and significant hurdles in acquiring their pain remedies. Then, they work together to find other market-driven options, such as abuse-deterrent medicines or physical therapy.
“For us, as a patient advocacy group, that’s what we need to do,” Gileno concludes. “An educated patient is an empowered patient. An empowered patient is a better patient for a doctor because the doctor can actually help them on their journey to get them the answers they need.”