By Kirsten Ballard
Everyone seeking emergency care navigates wait times, insurance, and harried medical staff, but for individuals living with chronic pain, an ER trip can devolve into discrimination and gaslighting.
“Doctors aren’t really equipped to use their standard [diagnostic and treatment] toolkit for chronic pain,” explains Amy Baxter, MD, founder and CEO of Pain Care Labs, who worked for years as a pediatric emergency physician and has spent her career studying pain. “Very few of us understand how chronic pain changes the structure of your brain: while the body may have healed, the changes that took place coping with the pain are still there.”
‘A tough spot’
James Neuenschwander, MD, is an emergency medicine physician in Columbus, Ohio. From day to day, his patients’ ailments run the gamut from gunshot wounds and strokes to generalized pain.
For those with chronic or invisible conditions, ER doctors must walk a fine line between care for the patient and caution of overprescribing opioids, Neuenschwander says.
“They’re in a tough spot because they’re in real pain,” he explains. “We’re in a tough spot because we’re getting squeezed all the time not to prescribe or give narcotics.”
Baxter notes that for people whose lives revolve around managing chronic pain, an emergency room visit is a last resort.
“For people living with chronic pain, so much of your day is figuring out how to manage pain, having to do extra things like eating or exercising or icing to make it manageable,” she says. “And when you finally get to the place where you have to go to the emergency room, it’s because you can’t handle it anymore. And that’s so demoralizing.”
ER visits are a last resort
Many individuals living with chronic pain know the sting of visiting the emergency room as a last resort and being mistreated or turned away.
Devin Goldstein, 22, a Washington, D.C. resident who lives with Ehlers-Danlos syndrome and other painful conditions, once was taken to the ER when his symptoms caused him to lose consciousness. The friend who went with him to the emergency room later relayed to Goldstein, who is transgender, that a doctor there had refused to treat him.
“The doctor told my friend that they didn’t know how to treat a trans person and left as my friend screamed at the doctor to save me. The nurses rushed to stabilize me as a new doctor was called,” Goldstein shares. “I don’t remember this happening, but just knowing it happened, I am scared every time I need the ER and have had dreams about something I wasn’t even awake for.”
Debbie Balassone, 56, of New York, who lives with rheumatoid arthritis and fibromyalgia, once went to the ER after her pain from a fractured rib increased; she sought an X-ray to ensure she didn’t have a punctured lung. She recalls that an ER doctor printed out her medication list and threw it at her, telling her to go to the doctor who prescribes her medications instead. She describes the experience as being “in the Twilight Zone.”
Nisha Ray, 47, who lives in New Jersey and has fibromyalgia, osteoarthritis, and other painful conditions, reiterates that she would only consider visiting the emergency room if nothing else had worked: “As a Black woman, there’s this stigma that you’re tough. You can take the pain and you can tolerate more. In the emergency room, I have had times where I’ve been disregarded, my pain minimized. I have to say I’m coming there because I’m really, seriously in pain. There’s something wrong, and it takes me pushing and pushing in order to get someone to actually listen.”
Tips for ER visits when you have chronic pain
For those living with chronic pain who visit the ER during a flare or emergency, it’s crucial to be prepared.
Explain what you’ve been diagnosed with and that it is part of your care plan to go to the ER when certain symptoms arise. Be prepared with contact information for your primary care physician and specialists to establish that your conditions are being actively treated by another physician.
Baxter recommends not using the 1-10 pain scale but instead contextualizing how the pain you currently feel is different from your baseline—perhaps usually you can walk to work, but now even walking across your house is too painful.
Neuenschwander suggests an explanation such as: “My activities of daily living are obstructed by the amount of pain I’m in. I want to get some relief so I can get back to work, get back to caring for my family, go grocery shopping, drive my mother to the doctor.”
He adds, “That humanizes the person.”
Neuenschwander notes that if you do use the scale to describe your pain, never go above a 10. Other red flags that doctors watch for include using street or brand names when requesting medications in the ER, or requesting pills by specific shape and color.
Finally, Neuenschwander recommends that patients focus on one primary issue when visiting the emergency room. Some doctors believe that “the more complaints you have, the less likely you are to be really sick.” This means focus on the pain and issue that prompted your visit and not other health problems that can be addressed outside of an emergency setting.
“We all want to help,” he says. “That’s why we came into this profession, right? We want to help relieve pain and suffering.”