Tips for “speaking doctor” when you live with chronic pain

Emergency department visits can be demoralizing. It’s bad enough to be scared and sick, but as a friend of mine once said, “Having to go to the hospital is admitting defeat. You can’t deny you have a disease that worsens your life.”

Even with a team of doctors, individuals living with chronic pain may find themselves requiring a trip to the emergency room from time to time.

As an emergency doctor, I know that not all of my colleagues understand chronic pain. To make matters worse, the healthcare environment in the US often pressures doctors to see a new patient every 15 minutes, leading their empathy to wear thin. In the spirit of making things better for both the patient and the doctor, below are a few ways to have a more successful experience in the emergency department (ED). While it’s still possible you’ll end up with a doctor that seems burned out, these tips should help you communicate what you need in a way that an ED doctor will respond to and respect.

Fill The Doctors in on Your Condition

Although it may sound burdensome, it can be very helpful to provide your ED care team with a one-page summary of your condition. For example, you could write the summary and then ask your doctor’s office to put it on their letterhead with an additional list of diagnoses, allergies, recent lab tests, medications, and any treatments to avoid. Keep a few copies of the summary in a safe, easily accessible spot at home and maybe one in your car. You likely know more about your disease and how it impacts your body than anyone else, so this summary can speed things along in the case of emergency. At the same time, it’s important to remain humble about what you don’t know, and be respectful of your ED doctor’s training. For instance:

You could say: “I’ve had a complicated course, so my doctor helped me to put this summary together to explain my current condition and treatment plan.”

This preemptive approach lets the ED doctor learn about you from another doctor, thereby enabling him or her to “save face” for not knowing much about endometriosis, for example. If you go for regular lab work, adding those results as a request from your doctor could also save you a trip or phone call. “If bloodwork is necessary, please add a calcium, magnesium, and phosphorus panel if it has been more than 2 months since my patient’s last blood draw.”

Patients living with chronic pain have very different tolerances of, and responses to, stimuli than others. Therefore, it’s important to let the ED know why you came in now, since many patients may feel like they should be living in the emergency department.

You could say: “Normally I can do this/feel like this/handle this, but for the past [time period], I’ve noticed this…”

This information is particularly important if the issue is pain. In addition, anchor your baseline pain with a concrete description. For instance,

You could say: “I’ve handled my chronic migraine without needing extra medication for over a year, but now…” Or, “I have no cartilage in my knees, but I’m usually able to get around by using NSAIDS. For the past three days, however…”

If you’re asked to rank your pain on a scale, let your doctor know what the most painful experience is for you before deciding on a number. For instance,

You could say: “Before I started treatment, I was at an 8. With my meds, my pain ranking came down to a 6, and when I added acupuncture treatment, I believe it came down to a 4. Today, I’m back up to an 8 or 9 – this is pretty extreme for me.”

Be Proactive about Sensitive Areas and Treatments

After you’ve presented your chief complaint about why you came to the emergency room, let the team know if there are any areas of your body, or any types of treatments, that you are very sensitive about. For example, if a simple touch to your right shoulder may make you jump or scream, give them a fair warning. Or, if you had an unpleasant experience with a previous treatment or emergency visit, let them know in advance.

You could say: “I’m sorry to be a bother, but could you let your team know that I’m paranoid about what goes in my IVs? A nurse once gave me X by accident, and I had [side effect], so now I double check when people give me meds. I don’t want anyone to be offended.”

Avoid Certain Phrases

Below is a brief list of phrases that make many emergency team members cringe, why they do, and what you could say instead to get a better reaction.

“I know my body.” People often use this phrase as a way of disagreeing with their care plan, or as code for “I think you’re wrong.” Instead, try to be concrete about why you’re worried, and how abnormal your symptoms are at this particular time. Use your medical history, current context, and goals to frame what’s happening and what you need.

You could say: “I’ve had fibromyalgia for 6 years [history] and this feeling is new [context]. I’m most worried about this new flare-up, and because this pain is severe, I just want to make sure there’s not something else going on in this area that could cause it to hurt so abruptly [goal 1], and ultimately feel better [goal 2].”

“I have a high pain threshold.” This phrase is often used by patients seeking medications, wanting faster service, or who may feel embarrassed about seeking emergency care to try to justify their visit. While you likely DO have a high pain threshold, emergency staff see a wide range of patients over their careers – they’ve undoubtedly seen someone with a bone sticking out of their skin saying, “No, I’d prefer not to have pain medicine, I’m ok.” Instead, use the script above for more specific history, context, and goal phrasing.

You could say: “I have sickle cell disease [history], so going through labor without medication was nothing for me [context], but today my pain feels different.”

The phrase “feels different” always gets a doctor’s attention.

“I’m allergic to [x].” In many doctor’s minds, the word “allergy” exclusively refers to something that may cause hives or lead to a severe reaction, such as anaphylaxis. Medications that make you nauseous, anxious, or dizzy, on the other hand, are not allergies. So, it’s important to be more specific.

You could say: “Morphine gives me a huge rash, fentanyl makes my nose itch, and Toradol has done nothing for me.”

“I’m not leaving until you figure this out.” Emergency doctors are not the best trained to solve complex pain conditions; they do, however, want to figure out if what they prescribe, if anything, will be potentially helpful. Know what you really need or are worried about and relay that information to your doctor.

You could say: “I’ve been feeling like this for [x] days; I called my doctor and she can see me Tuesday. I just want to be sure this isn’t appendicitis, and it would be great if I could get something today to have a good night’s sleep.”

“I need a test.” A rule of thumb in the emergency room when it comes to laboratory tests, such as blood tests, is that a doctor will not order any test that is irrelevant to the problem at hand. However, if you are already getting blood drawn, your doctor may do you a favor and add a scheduled lab at your request. However, at the end of the day, it’s not their job to do so.

“The only thing that works for me is [a specific drug].” Doctors realize that patients know which medications have worked best for them in the past, but they also are keenly aware of drug-seeking behavior. Having your list of prescribed medications on your doctor-signed medical history summary (as noted above) can go a long way in the emergency department. For example, if you were traveling and a prescription was lost, or if there’s an extenuating circumstance that caused you to run out of a prescription unexpectedly, the doctor may be more responsive when you have your list in hand.

Overall, individuals living with chronic pain, and those trying to treat them, each face unique challenges. But the goal of relieving suffering always comes first. By being specific and knowing how to communicate your needs quickly, your emergency visits can be less frustrating.

*After practicing as a double-boarded pediatric emergency physician for 20 years, Amy Baxter, MD, is now the founder and CEO of Pain Care Labs, an all-woman company with the mission to eliminate unnecessary pain. The company’s Buzzy needle pain reliever has blocked pain from over 31 million procedures, and their VibraCool vibrating cryotherapy has been used to reduce opioid use. DuoTherm, a new hot and cold low back pain device with acupressure points and multiple vibration cycles, will be available in late 2019.

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