The US is facing what many are describing as an opioid crisis, with growing numbers of deaths associated both with opioid medications and overdoses on heroin – 19,000 in 2014 linked to opioids alone. But in the swirl of debate over the subject, there’s one group of Americans we aren’t hearing from: chronic pain patients, many of whom need to use opioids on a long-term basis to control their pain effectively.
Unlike patients with acute, short-term pain or pain associated with terminal illnesses such as cancer, they’re looking at a lifetime of living with conditions such as Ehlers-Danlos syndrome, fibromyalgia and endometriosis, along with many other disorders associated with chronic pain. Others are dealing with persistent pain from injuries.
Many have conflicted relationships with the medications they need to enjoy a good quality of life, and they fight an tough battle against negative public perception and cultural attitudes. They’re struggling with issues that aren’t being accounted for in conversations about dependence, addiction and the safe use of opioids for long-term pain management.
Heather Ace Ratcliff, who has Type 3 Ehlers-Danlos, a connective tissue disorder characterized by hypermobility which allows her joints to dislocate and subluxate easily, says uninformed views can stigmatize chronic pain patients who are struggling to access relief. “I am regularly treated as if I am overreacting, a hypochondriac, or a drug addict for wanting an increase in pain management,” she says, illustrating the consequences of misinformation about opioids and pain.
But those attitudes are internalized as well. Even though many patients recognize that opioids help them manage pain effectively, some still fear them, worrying that their relationship with their medication may be sliding into addiction. At the same time, they’re dealing with side effects like fatigue, “brain fog” and gastrointestinal stress. In an environment where physicians who aren’t extensively familiar with pain management and opioids can leap to conclusions, it can be difficult for patients to have honest conversations with their doctors about their concerns, as they may fear being chastised or cut off.
Shayla Maas, another patient with Type 3 Ehlers-Danlos who also has an autoimmune disorder, says that the conversation surrounding opioids sometimes makes her paranoid about her medications. “Maybe I’m just blowing it out of proportion,” she says, “looking for attention, looking for meds.” She can hardly be blamed for her self-doubt, as that’s precisely the kind of messaging she receives as a chronic pain patient, and it’s easy to internalise the fear, she says, that you might become a “dope fiend”.
Anna H, a patient with fibromyalgia, shares these worries. “I’ve been taking relatively small doses of pain meds every day for about six years, but I’m still afraid that taking a certain amount of pills – even if I’m in a lot of pain – will send me down the path of addiction.”
Their fears are to some extent grounded in reality: opioid medications can have an addicting effect. But the real story is more complicated.
“Opioids are the cornerstone of the treatment of pain,” explains doctor Anita Gupta, a board-certified anesthesiologist, pain specialist, pharmacist and vice-chair of Drexel College of Medicine’s division of pain medicine in Philadelphia. Among her many roles, she also serves as vice-chair of the American Society of Anesthesiologist’s ad hoc committee on prescription opioid abuse and has a vested interest in addressing the misuse of opioids. But she also has concerns about inadequate information that harms both patients and providers.
Gupta makes an important distinction between dependence and addiction, cutting to the heart of one of the greatest misunderstandings in the conversation about pain management. “If you’re on opioid medication for a long period of time, you become dependent,” she explains. “When a need becomes a want, that is really an example of when someone can become addicted. When you want it and you can’t live without it, can’t survive without it, it interrupts your day to day life, that’s addiction.”
Though organizations like the American Academy of Chronic Pain Management, US Pain Foundation and the American Chronic Pain Association engage in patient advocacy work, it can be a struggle. Even with the weight of patients, family, and medical providers behind these groups, they aren’t always treated as stakeholders in processes like developing new guidelines for opioid prescription and use.
“There’s a saying that goes something like: ‘We are all one drink or pill away from addiction,’ and I know this is meant to destigmatize what addicts go through, but I feel like I’ve been seeing variations on this ‘common knowledge’ more and more lately being used (on social media) as a cudgel to remind patients to not overdo it,” Anna says, speaking to the dual-edged sword of awareness. A motto designed to humanize the experience of addiction has been turned into a weapon that targets people who rely on opioids for pain management, and that translates to real-world stigma.
“When other people find out that I’m on opioids,” Maas explains, “depending on how close they are and how well they know me, I might get an ‘it sucks that your pain is so bad’ to a slightly narrowed side eye.” The judgmental comments she receives make her feel like people think she’s taking opioids for the fun of it.
“Believe me,” she says, “this is not for fun.”
“I haven’t really experienced the stigma personally other than some ill-informed comments from acquaintances,” says Anna. “But the media coverage of the ‘opiate epidemic’ as driven by pill pushing-doctors and by pain patients worries me a lot, and I think it is already being used to forward the idea that people in chronic pain should not have access to relief from their pain.”
Both Maas and Anna articulate worries that chronic pain patients are being “thrown under the bus”. Doctor Jerrold Winter, professor of pharmacology and toxicology at the University at Buffalo, tends to agree, and is concerned that new CDC guidelines and other efforts to address opioid use could actually make the situation worse.
“I think [the CDC guidelines] go much too far and a) will leave many in pain and b) will drive some seeking pain relief into the illicit market with all its hazards,” he says. “Indeed, two NIDA officials recently pointed out that the rate of deaths from prescription opiates between 2011 and 2013 were stable while heroin-related death rates rose dramatically. I fear that this trend will only worsen under the CDC guidelines.”
Gupta points out that the most important tool for addressing addiction is a simple conversation: patients need to be open with their care providers, working with them on an effective pain management plan and addressing warning signs of addiction promptly. Patients experiencing cravings for their medication along with symptoms like mood changes, difficulty sleeping, oversensitivity to stimuli and increased blood pressure may be exhibiting signs of dependence that has transitioned into abuse.
The ability to be open about these symptoms along with concerns about degree of dependence on opioid medication will help patients make sound decisions about their care.
That requires both clinician and patient education, as well as listening to the fears of chronic pain patients like Maas and Ratcliff as they attempt to balance chronic pain, fears about forming addictive habits and frustration with public perception. Both doctors and patients need to be playing a more prominent role in the unfolding conversation about how to deal with a very real American public health crisis.
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