(By Kelly Burch / The Fix)
Patients with a mental health condition might have a hard time accessing opioids for pain relief, while patients with unexplained pain are often referred to psychiatric care, which does little to alleviate their symptoms. Finding treatment can be frustrating and humiliating.
Elizabeth has met psychiatric providers who were skeptical of her pain. “They wrote in my chart that I had a delusion that I had Lyme disease,” she said.
Four years ago, Dez Nelson’s pain management clinic demanded that she complete a visit with a psychologist. Nelson was surprised, since she had no history of mental illness, but she didn’t feel that she could push back on the request.
“Of course I said okay — I didn’t want to lose my treatment,” Nelson told The Fix. “I was not happy about it, but I did it.”
Nelson, 38, went to the appointment and had a mixed experience with the psychologist. She hasn’t been back since and the pain clinic hasn’t asked her to visit a psychologist again. Still, Nelson said that the experience highlighted — yet again — the discrimination pain patients face.
“It was a condition of my continued care,” she said. “It seemed like they’re bringing it up in a beneficial light, as part of a multi-pronged approach to pain care. But I don’t think [mental health treatment] should be forced on a patient who doesn’t think they need it.”
Chronic pain and mental illness are among the most stigmatized conditions in modern medicine. The conditions frequently intersect and change the way that patients are cared for and treated. Patients who have a mental illness might have a hard time accessing opioids for pain relief, while patients with unexplained pain are often referred to psychiatric care, which does little to alleviate their physical symptoms. At the same time, research suggests there is a strong connection between mental health and pain: depression can cause painful physical symptoms, while living with chronic pain can cause people to become depressed.
All of this makes treating chronic pain and mental illness complex and frustrating for doctors and patients alike.
A Mental Health Diagnosis Affects the Way Your Doctor Treats You
Elizabeth* is a professor in her mid-thirties who had undiagnosed Lyme disease for eight years. Her Lyme contributed to the development of an autoimmune disease that has led to widespread inflammatory and nerve pain throughout her body. Elizabeth also has bipolar disorder. Despite the fact that she has been stable on medication for a decade, her mental health diagnosis complicates her pain treatment.
“Doctors’ demeanor changes when I tell them my medications. When I say I have bipolar disorder, it’s a whole different ballpark. To them that’s clearly a risk factor and red flag for drug abuse,” Elizabeth said.
Opioids are one of the only treatments Elizabeth has found that works to alleviate her pain. But she also takes benzodiazepines on an as-needed basis to control her anxiety (usually once a week). Even though Elizabeth is well aware of the risk of combining the two medications and knows better than to take the two pills together, doctors refuse to prescribe both. They don’t seem to trust her not to abuse them.
“I could tell them that I wouldn’t take them together. But that’s not a valid choice,” Elizabeth said.
While doctors were extremely cautious about this drug interaction, they didn’t focus on another drug-related risk: medications that are used to treat nerve pain can cause adverse reactions in patients with bipolar disorder. No one warned Elizabeth of this danger, and she ended up being hospitalized for psychosis after a long stretch of stability.
“The doctors didn’t talk about it because it’s just a side effect, not a liability concern,” she said.
On the flip-side, Elizabeth has experienced psychiatric providers who were skeptical of her pain diagnosis.
“They wrote in my chart that I had a delusion that I had Lyme disease,” she said.
The Intersection of Pain and Mental Illness
Treating patients with pain and mental illness is complicated because both conditions rely on patient reports rather than objective tests for a diagnosis and to create or adjust a treatment plan.
“Pain is a subjective symptom of the people feeling it. There is no way to measure it,” said Dr. Medhat Mikhael, a pain management specialist and medical director of the non-operative program at the Spine Health Center at Memorial Care Orange Coast Medical Center in Fountain Valley, California
Pain and mental illness can exacerbate each other. In addition, medications for the conditions can interact in rare and serious ways, like what Elizabeth experienced. Finally — and at the forefront for many pain specialists — is the fact that many people with mental health conditions also develop substance use disorders and treating them with highly-addictive opioids can be dangerous.
“We address these issues with patients head on, explain that staying on these medications is very risky for them,” Mikhael said.
Mikhael said that there’s a reason doctors ask patients so frequently about their mental health and substance abuse history. While some patients find that exhausting and repetitive, Mikhael feels it is his responsibility to be constantly evaluating the risk and benefits of using pain medications for people more susceptible to substance misuse or addiction.
“I have to give them the benefits of the doubt, particularly if the history does not show they’re going doctor shopping. I have to trust them and I have to help them,” he said. “But trust has limits. I can’t say I trust the patient and let go.”
My Body Is in Pain, I Do Not Need Psychiatric Care
As the medical community grapples with how to manage pain in light of the opioid epidemic, there is an increased focus on holistic approaches to pain management. Nelson, however, believes this can be harmful to patients who need the pain-relieving power of opioids.
“They’re trying to turn into bio-psycho-social model, and there are people with real diseases who are dying,” Nelson said. “My pain has nothing to do with my psyche. It has to do with the fact that my body is sick.”
Before she was diagnosed with arthritis, emphysema and hemiplegic migraines, Nelson was often sent to psychiatric care when she arrived at the emergency room in pain. She had one provider tell her that facial paralysis — later found to be a symptom of her migraines — was psychogenic.
“Instead of doing their jobs and investigating the physiological issues, they jumped right to the psychological,” she said, pointing to the long history of doctors believing that women’s pain was not real. Eventually, these experiences began to take a toll on Nelson.
“There was a time when I began to question my own sanity. I thought ‘maybe they’re right, maybe this is just in my head.’”
Untreated Pain Is Like a “Time Bomb.”
Both Nelson and Elizabeth have been able to advocate for themselves. While they’ve still struggled with the medical community, they’re been able to improve their care. Yet many people with chronic pain and mental illness don’t have the ability to advocate for themselves in this way.
“I’ve had a lot of education, so I feel comfortable and confident talking to a doctor,” Elizabeth said. She also has the money to be able to travel to a pain clinic and the support of a spouse and therapist.
“I have a lot of these privileges that a lot of people don’t have,” she said. “I’m grateful for that, but I shouldn’t have to be. It should be ordinary.”
Elizabeth often thinks about patients who have uncontrolled or treatment-resistant mental illness, and how that might affect their access to pain relief.
“Should they just not get pain management because they’re not well with their mental illness? Of course not.”
Having in-depth conversations, sharing information between different specialists, and providing community support could all help improve outcomes for people dealing with chronic pain and mental health conditions, she said.
“People need help, not a punitive approach of taking [pain management] away,” she said. “Energy should be put into safe approach to dealing with pain. You can’t ignore it — it’s like a time bomb.”
*Disclaimer: The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of LymeNow or the LymeNow community.