By Jenni Grover Prokopy
Doctor shopper. Drug seeker. Pharmacy shopper.
These labels are often attributed to pain patients seeking appropriate pain treatment, but who get caught up in a system that is continually tightening controls against fraud. As a result, many people in pain are denied the treatment they need to be productive and happy.
Dan Carr, MD, president of the American Academy of Pain Medicine, says there are a number of factors that have helped create the current atmosphere that stigmatizes pain patients. One of the biggest, he says, is shame.
Shame erodes a sense of connection and community
To understand the history of pain in western society, Dr. Carr directs us all the way back to Roman emperor Marcus Aurelius, who wrote almost 2,000 years ago about the plight of those living with chronic pain. In The Meditations, Aurelius said that listlessness and loss of appetite could be signs of unrecognized pain, and that no one should be ashamed to be in pain.
Yet despite our culture’s very early recognition of the reality of pain, another force works to stigmatize patients, says Dr. Carr—this one biological. He explains that a kind of “herd mentality” often means weaker members of our herd (people with chronic pain and illness) may be ostracized and isolated, and only those who recover (stop feeling pain and other symptoms) come back to thrive in the herd (community).
“People with pain, especially chronic pain, have a tendency to be marginalized and stigmatized,” says Dr. Carr. That isolation can be deadly.
Shame makes it more difficult for pain patients to stand up for their rights, to be effective advocates for themselves and to build collaborative relationships with their health care providers. Dr. Carr says this must change.
Antidote: Strong doctor-patient relationships
Health care providers are taught to be empathetic, to get to know their patients and understand them as more than numbers on a chart. But in reality, many health care providers are harried, overworked and heavily regulated, resulting in barriers to forming deeper relationships with patients.
Dr. Carr says the most important action a patient can take to avoid being wrongly labeled is to improve these relationships. For starters, “monitor what treatments have been done, and what has benefited you or not,” he says. Bring this information with you to every appointment. “This can be really helpful because even in the current era of electronic records, this information is not always at the fingertips of providers.”
When a patient shows initiative by providing accurate, concise records of treatment history, it goes a long way toward building fundamental trust, Dr. Carr explains: “If a person’s been tracking what’s helped and what doesn’t help, that starts to move in a direction of pre-empting an adversarial relationship where the doctor says ‘you’re doctor shopping’ or ‘you’re drug seeking.’” Whether or not you take controlled substances, make sure you’re getting your medications from a health care provider with whom you enjoy a trusting relationship.
“If that’s not possible, I think the benefits one gets by having trust and a good relationship warrant trying to find someone who can provide a good relationship,” he explains. If not your doctor, then he suggests building a bond with a physician’s assistant or nurse practitioner—someone in the practice who can be your advocate.
Pain patients can take action to avoid unfair labels:
Dr. Carr says there are a number of other things pain patients can do to avoid unfair and negative labels:
- Determine who has the power to write prescriptions. The more consistent you are in having the same doctor writing orders, the easier it will be to get your medication.
- Understand your pharmacy’s policies. Current prescription monitoring programs vary from state to state, and some may flag you if you submit a prescription with a new provider’s signature, even if the new provider works in the same practice as your doctor.
- Keep communication lines open. If you must get your prescription from a new provider, inform the pharmacy or have your doctor’s practice communicate that you’re still under their care. This can help you avoid being flagged.
- Stick with the same pharmacy. It may seem like no big deal, but trying to get a refill on your medication at a different pharmacy from month to month can also raise a red flag.
- Avoid weekends. Do your best to anticipate when you’ll need a refill so you don’t run out of medication over the weekend. That’s when everyone’s suspicions are aroused, says Dr. Carr, and you’ll have trouble getting a short-term refill at emergency rooms or pharmacies—even if you’re using a non-controlled medication.
About Dr. Carr:
Dan Carr, MD is a professor and director of the Pain Research, Education and Policy Program at Tufts University School of Medicine in Boston, Mass. He was named president of the American Academy of Pain Medicine in Spring 2016.
Jenni Grover Prokopy founded ChronicBabe.com in 2005 and has been a boisterous advocate for people with chronic pain and illness ever since. A professional speaker and writer with more than 25 years of experience, Jenni believes all people have a story worth telling. She lives in Chicago with her boyfriend, Joe, and enjoys gardening, quilting and five-minute dance parties in her living room.