Part 5: Healing the Hurt: How To Handle Clinician-Associated Trauma

Over the past several months, Chronic Pain Partners has published a series of articles about clinician-associated trauma based on the paper “Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes” by Colin M.E. Halverson, Heather L. Penwell, and Clair A. Francomano. The last four Chronic Pain Partners articles discussed what clinician-associated trauma looks like. Identifying the problem is a good start, but how can patients cope with it? Can we fight back against it? How?

There are two arms to dealing with clinician-associated trauma: “caring and coping” and “fixing and fighting.” However, before we get into the specifics of our game plan, it’s important to remember two things

Clinician-associated trauma and the actions that led to it are never your fault. It’s not your fault if a provider is running behind schedule. It’s not your fault that you have a complex chronic illness or disability. It’s not your fault that our medical system isn’t set up for people who need more in-depth time with knowledgeable doctors. These things may end up being your problem—hence the list that follows of ways to cope with them—but it is never your fault, despite what gaslighting may lead you to believe.
There are some things that are beyond your control. Many of us want to fix problems we see, either for ourselves or for those who come after us. However, some things, like how the medical system is set up or whether a doctor remains employed at a specific hospital, are beyond what we can control. That doesn’t mean we should immediately give up. It means we need to look carefully at what resources we have and use them to the best of our abilities.

Caring and Coping

Take care of yourself first. One of the most important things to do when dealing with clinician-associated trauma is to take care of yourself. What do you need to feel okay? Do you need to eat? Drink a glass of water? Lie down? Take medication? Zone out to a movie or video game? Hit the gym and hit some boxing bags? Meditate? Be in nature? Find something that can help release that feeling of helplessness and hurt.

Journaling, meditating, using apps like Calm and Insight Timer, physical movement, crafting, reading, listening to music, spending time with loved ones, and more can help provide an outlet for frustration and processing. The key is to find something that fills and replenishes your soul and your resilience bucket. Remember: clinician-associated trauma is something that happens repeatedly. Having “your thing” to turn to when it happens again or when bad memories surface can help calm you.

Lean into your loved ones. The American Psychological Association recommends identifying “friends or family members for support. If you feel ready to discuss the traumatic event, you might talk to them about your experience and your feelings. You can also ask loved ones to help you with household tasks or other obligations to relieve some of your daily stress.” Many people are afraid that asking for help will make them seem weak. False. None of us can do this alone.

Talk with a mental healthcare provider. Talking with a mental healthcare provider may offer a space to process your emotions, practice coping skills, and make a coping plan for future use. While any counselor can help with this, it may be beneficial to seek out a counselor who has experience helping people with medical issues. A health psychologist is a good option, as they have been trained to deal with the mental health problems people with complex and/or chronic medical conditions and disabilities face.

Make connections. Through the wonder of the Internet, we’ve been able to connect with more people in more places faster than ever before. Social media sites have made it easy to find others with rare conditions. Search “EDS” or “Ehlers-Danlos” on Facebook, Instagram, YouTube, or TikTok, and dozens of results appear. Connecting with others helps you feel less alone—you’re able to find people who really understand what you’re going through. Publications and advocacy groups are present on social media; you can keep up with the news, learn what advocacy groups are doing, and join if you feel so motivated. Join an in-person or online support group—you’ll help others with your experiences and knowledge as much as they will help you with their listening and support.

Take a break. From life or work, if you can, but also take a break from medical care. Delay some appointments if it won’t cause you any harm. Stop going to see the doctor who is causing you grief if you can. Don’t neglect the care you need, but if it can be pushed into the future or spaced out a bit, it will give you a chance to breathe and revive yourself before going into battle again. This is also one way you can gain a little more control over your healthcare. If possible, you get to decide which appointments take priority, if you’re going to delay a particular procedure, or make whatever scheduling decisions make sense to you. Again, make sure to get the care you need when you need it, but you don’t always need to take the next available appointment.

Do nothing. Doing nothing is a valid response to clinician-associated trauma. You’ve been through a trauma, and while other people may be encouraging you to “fight the system,” it’s okay to just…not. Sometimes focusing our energies elsewhere is a better option.

Fixing and Fighting

Before the Appointment

Track your symptoms. There are many ways to do this, but Dr. Nicole Mitchell, the Director of Diversity, Equity and Inclusion for the Obstetrics and Gynecology department at the Keck School of Medicine of the University of Southern California, shares with the New York Times the following questions to start with: “What are your symptoms? When do you feel those symptoms? Do you notice any triggers? If you have pain, what does it feel like? Does it wax and wane, or is it constant? What days do you notice this pain?” . You may want to add anything that makes the pain better or worse and what kind of treatments, if any, you’ve already tried. You may track specific things related to particular body parts, such as what you ate before your stomach upset occurred, how much water you’re drinking per day, or what kinds of movement you do in a day. Doctors love data, but they don’t want your 18-page tracking journal. Before your appointment, see if you notice any trends and point them out to your doctor at the appointment. When symptoms, like pain or fatigue, are invisible, it’s helpful to have data to provide a visual aid. Journals can also help identify triggers for conditions like mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS). Tracking medications can help identify side effects and determine whether the medication is having its intended effect.

Make two lists before your appointment. It’s important to make a list of things you want to talk to the doctor about; sometimes you can get emotional and forget (especially if gaslighting or other methods of dismissal are being used) or the appointment goes off on a tangent, and suddenly time’s up and only one of your issues is addressed. In addition, rank the items in order of importance. Pick your most pressing topic (or two) and put it at the top of your list to make sure you address it. Depending on the length of the appointment, you may only have the time to address two or three items. The rest of the items don’t have to be in a strict order, but put things that could wait for another appointment at the bottom. Make sure to include questions you want to ask as well.

When you’re done with your list of topics, make another list—a list of things you don’t want to talk about. Do this carefully and when you feel strongest, as it may bring up memories or feelings that are traumatic. Write down some phrases you might say if the topic comes up to shut it down or move on to something else. Some ideas:

“Thank you for your concern about X, but today, I’d like to focus on Y.”
“I hear what you’re saying, and X is important. Y is just as important to me.”
“I’d prefer we don’t speak about X during my appointments, now or in the future.”

If someone is coming with you to your appointment (more info below), you may wish to go over the lists with them or give them copies. They can help keep you on track and even speak up if one of your “no-go” topics comes up.

Send a pre-appointment message. Send a message to your provider via your patient portal (like MyChart) and explain what your most pressing concerns are. These can be specific symptoms or issues that you want to address or things you don’t want to talk about. You can address things that have happened at other appointments—with this provider or other providers—and discuss how they were helpful or harmful. Some people do this whenever they see a new provider. It allows them to explain things—like how EDS might be related to what is happening, a desire for weight-neutral healthcare, or a past filled with traumatic run-ins with the healthcare system. Whether it’s a new provider or one you’ve seen before, sharing your thoughts beforehand can not only help the provider understand your reason for being there, but you can also be sure you have a handle on what you want to talk about. This is also a way to share information like articles, pamphlets, and more.

Request an interpreter and accommodations, if necessary. Having these items set up in advance will reduce the amount of anxiety present on appointment day. It can also help prevent clinician-associated trauma related to language barriers and inaccessible offices.

During the Appointment

Bring someone with you to your appointment. To minimize clinician-associated trauma, it can be helpful to take another person to your appointment. This person doesn’t need any special medical knowledge (though if you have a condition like EDS or HSD, it would help if the person has a basic understanding of it), but you should be comfortable with them hearing medical details. If you want the person to speak up on your behalf, plan what that might look like. Ragen Chastain, a board-certified patient advocate, discusses her process for attending appointments with other people. (Though her advocacy is mostly for people of higher weights, many of her suggestions are applicable to other situations.) She makes sure to ask the person what they want her to do at the appointment. “You should advocate only if/when the person has asked you to advocate, only in the ways they have asked you to advocate, and you should stop the moment they ask you to stop,” Ragen explains. Do you want another person in the room? Is there a certain topic that you want your advocate to speak up about? Is there a physical sign or a specific word or phrase that tells them to speak up? Do you want them to take notes? This is your appointment, and it should happen the way you want it.

It can also be helpful to give both lists you made earlier to the person who is coming with you to the visit. They can speak up on your behalf, remind you of topics you want to address, and steer the conversation back if it starts to stray. Additionally, as Dr. Jennifer Kilkus advises in her article “How to Deal With Medical Gaslighting,” they may hear or remember something you don’t or think of a question you may not have thought of. And, if they can’t physically come to the appointment, have them on speaker phone or a video call. (Just make sure this is okay with your provider in advance.)

Unfortunately, we live in a society where many people need to be at work during the hours that doctors’ offices are open. Because of this, finding someone to go with you to an appointment can be a challenge. However, there may be a patient advocacy group associated with your hospital or one organized as a non-profit in your area that can help you—and they probably have many more ways to help.

Tell your provider how you feel things are going. If you wish to give your provider feedback face-to-face, do it at the beginning of the appointment, when you’re calm. Keep it brief, simple, and actionable. Giving feedback to a medical provider, in the middle of an appointment, when your emotions are running high, is generally not a good idea. At that point, it might be easier to think about reframing the conversation, as suggested by Dr. Jennifer H. Mieres, a professor of cardiology at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell in the same New York Times article cited above. The article suggests phrases like:

“Let’s hit the pause button here because we have a disconnect. You’re not hearing what I’m saying. Let me start again.”
“I’ve been having these symptoms for three months. Can you help me find what is wrong? What can we do to figure this out together?”

If you don’t like the idea of face-to-face feedback, you can tell another staff member to pass on the message; however, you run the risk of the message not being delivered or being delivered in different words that change the meaning (unless you put it in writing). You can send a message in your patient portal or give your provider a note or letter. You can also call or email the clinic director if you feel feedback given directly to the provider might be ignored or not well received.

It may seem like a scary prospect to give critical feedback to a doctor, especially if that provider is already dismissive or rude. A study by Christine Porath, a tenured professor at Georgetown University’s McDonough School of Business, and Tony Schwartz, the founder and CEO of The Energy Project, found that “higher levels of feedback are associated with 89% greater thriving at work, 63% more engagement, and 79% higher job satisfaction. People who receive more feedback are also 1.2 times more likely to stay with the organization” (Porath). While they don’t specify who that feedback is coming from, it’s difficult for anyone, including medical providers, to improve if they don’t receive feedback from employers, clients, and customers (or patients).

When providing feedback to your doctor or anyone for that matter, remember the following guidelines:

Take time to prepare.
Be specific. Use examples if necessary.
Be realistic.
Make it actionable.
Don’t try to change personality traits.
Give feedback as soon as possible after the action that caused it.
Use the following format: “I feel/felt ____________ when you _______________. In the future, could you ______________?”
Don’t use the positive-negative-positive sandwich. We remember the first and last things we hear, so critical feedback can be lost.
Use empathy:
- “I know things are difficult for primary care providers today, especially after COVID.”
- “I can only imagine how rushed you must feel having so many appointments back-to-back. Have you even had a chance to eat lunch?”
- “The clinic is understaffed, so I understand that delays might happen. However…”

Take notes during your appointment or record it. While you will have your provider’s documentation of the appointment, not everything you feel is important will be recorded there. Many patients take notes, so a doctor shouldn’t be surprised if you want to do it. You can also have the person you brought along take notes. You can record (audio or video) the appointment, but you need to ask permission to do so. Mobile phones make it easy to record an appointment and have audio documentation of what happens. Make sure you get the consent of everyone in the room before recording. By taking notes or recording the appointment, you have your own documentation of what happened at the appointment. You can later compare that to what your provider writes in their office visit note or use it as documentation if you want to file a complaint.

Ask questions. Don’t be afraid to ask questions. Your provider may seem like they are in a rush or frustrated, but that’s not your fault or your problem. As long as you’re within your allotted appointment time (adjusted for any delays you’ve experienced), you can ask as many questions as you want. If you’re worried about being dismissed, you can say something like, “I have three more things I’d like to ask you about.” If your doctor is giving inadequate answers, ask again in a firmer voice or say something like, “That didn’t answer my question. What I’m asking is…” and rephrase the question. Ask “why” or “how” a lot. Ask for clarification if you don’t understand, and keep asking until you do. It’s part of the medical providers’ job to educate and provide answers.

An important question to ask at the end of the appointment is, “What happens next?” The New York Times article “Feeling Dismissed? How to Spot ‘Medical Gaslighting’ and What to Do About It.” author Christine Caron suggests telling your provider “you would like to understand three things: the best guess as to what is happening; plans for diagnosing or ruling out different possibilities; and treatment options, depending on what is found.” Or, as suggested in the Vox article “How to Advocate for Yourself at the Doctor’s Office” say, “I’m not a doctor, so I don’t quite understand this, but I’d really like to understand more. Can you tell me where you got that conclusion from?” or “Can you tell me more about your diagnosis or why you chose that treatment plan?”

If it doesn’t feel like a good time to you to ask questions—you’re getting emotional, a ride is waiting, or something similar–follow up with a phone call or a message in your patient portal.

After the Appointment

Take notes right after the visit. If you didn’t record the visit, it’s helpful to take notes right after the visit about what you remember happening. You will often be offered a printout of an after-visit summary after your appointment. Take that and make notes on it. Sit in the waiting room if you need to. Use the Notes app on your phone. Find a private space and make a voice note. If you don’t have time to do it right after the appointment, find a time to do it as soon as possible. If you didn’t take notes during the appointment or it was difficult to keep up with the notes while the provider was speaking, this can serve as a supplement to the notes you did take or to the recording. Otherwise, it’s your documentation of what happened, and it can be used in a variety of ways—providing feedback to a provider, filing a complaint, and more.

Fill out patient satisfaction cards and surveys. Another, less personal way to provide feedback is to fill out any patient satisfaction surveys you receive. It may seem like you’re just filling in a bunch of boxes or clicking a bunch of numbers, but, in a lot of locations, the scores and the comments are sent to the specific provider and their boss, anonymously, of course. (Make sure to include positive comments for providers who are doing a good job!) The ratings are used to modify services and train employees. If you don’t get a survey and you have something to say, you may be able to grab a comment card from the front desk or contact patient relations.

Switch providers. Whether it’s a provider you see specifically for EDS, another specialist, or a primary care provider, if you don’t mesh with the provider, there’s nothing wrong with switching to a different provider. You are entitled to a second, third, and fourth opinion.

In a study of patient encounters from October 1, 2006 to September 30, 2007, researchers extrapolated that there are 12 million diagnostic errors in the United States in one year, and half of those were errors that harmed the patient. It can be lifesaving to get another opinion, especially when dealing with complex and chronic medical conditions like EDS. If your provider isn’t listening, is being rude and dismissive, or is doing any of the dozens of things that cause clinician-associated trauma, it may be time to make a change.

This is sometimes easier said than done. Limited provider choices due to insurance coverage, living further away from medical centers and hospitals, wait times that can last months, if not years, having access to a provider who understands EDS, and other factors can make switching from a provider who is actively causing clinician-associated trauma to another one who can be helpful.

However, quality care from a provider who is empathetic and understanding can sometimes be better than care from a doctor with all the knowledge. Knowledge can be taught and learned, but empathy and kindness usually can’t. Ask other doctors you trust, friends and family, geographically appropriate social media groups, or your insurance company for provider recommendations. Sometimes, you will have to grit your teeth and bear seeing a provider who invalidates your experiences. Just remember: This may be your problem, but it’s not your fault. You get to choose how to deal with it.

Review your medical record. The 21st Century Cures Act in the United States made fast and easy access for patients to their medical records a requirement. It’s easier than ever to make sure what is documented is accurate and appropriate. Read your office visit notes. If you have trouble understanding what you’re reading, Open Notes can help. It’s good to keep in mind that the notes are written for other doctors and medical staff as a form of communication. Every single thing will not be documented; on the other hand, what is documented should be objective reporting and free of bias.

If you don’t have access to your office visit notes on a patient portal like MyChart or you need other parts of your medical record, you can request those records through the medical records office at the hospital or medical organization you visit. There’s a form to fill out and sometimes a small fee. For smaller clinics, it might be the provider or someone in the business office who releases records.

Make sure what you’re reading accurately reflects what happened at your appointment. There may be some inaccuracies that are harmless, but it’s not common to find that the doctor, medical scribe, or voice-to-text recorder got something wrong. It’s also possible that you disagree with what the provider has documented. In gaslighting situations and those where a provider is being rude, dismissive, judgmental, or critical, it may be in your best interest to correct or amend the medical records.

The medical record office should have a way for you to file a correction or amendment to your medical records. Usually, it’s a form you fill out, and what happens after that is different depending on the medical center, hospital, or clinic. Remember: these are your medical records; you were there at the appointment, and you have the right to see them and make sure they accurately reflect what happened. Your medical records are also a legal document, and you want your legal documents to be as accurate as possible.

Contact the patient relations office. The patient relations office is like the customer service center for a hospital or medical organization. It’s called patient relations, patient experience, or something similar. (Not to be confused with a patient advocate or patient navigator, though sometimes the offices and roles overlap.) According to UC San Diego Health, the patient relations or patient experience department “acts as a bridge between our patients, hospitals and physicians to respond to concerns, issues and requests. Patient experience specialists are here to help patients and their families communicate their experiences with UC San Diego Health and navigate our health system.” You can find contact information for the patient relations office by searching your medical provider’s website or by calling their information line. (Smaller clinics may have one or several employees that handle patient relations but may not have a specific office.) This is the office for filing complaints about care, specific providers, and specific services received.

Ashley Hay, currently a freelance healthcare writer and formerly a nurse writing for The Intake, describes the various steps a patient relations employee will take when a patient contacts them with a complaint:

Listen actively and acknowledge the patient’s feelings.
Apologize for inconveniences and misunderstandings.
Assure the patient that the feedback is valuable and will be addressed.
Investigate the issue—this will look different depending on the organization and the issue, but it often includes talking about the complaint with the providers and supervisors involved, checking medical records and other documentation, seeing if other similar complaints have been made, and more.
Implement changes to prevent the issue from happening again.
Communicate transparently with the patient about what is happening and how their concern is being addressed.
Follow up to ensure satisfaction.

Other actions may include looking into relevant laws and regulations and other steps in a facility-specific complaint process.

The patient relations employee will document the complaint, the investigation, and the outcome. This information is not covered by HIPAA law and is not part of your medical record. When documenting what happened and how it was resolved, the hospital or medical organization needs to be careful about their liability for what happened. In an educational PowerPoint posted on their website by legal office Holland & Hart LLP, they state, “Beware: there is no absolute protection for investigations… Assume outsiders will read some day.” The presentation continues and reminds the audience that “anything you document may be used against you.” They recommend using qualified, trained people to document to do it accurately and professionally. This is all to say that the patient relations department isn’t simply looking out for what’s best for the patient. They also have a responsibility to make sure their employer—the hospital or medical organization—isn’t legally admitting any wrongdoing in a way that could be admissible in court.

A complaint is considered resolved or closed “when the party who filed the grievance is satisfied with the response, or when the healthcare facility has taken ‘appropriate and reasonable’ actions to resolve the grievance even if the patient or patient’s family is unsatisfied with the response” (ECRI). Thus, filing a complaint with patient services sometimes does not offer a satisfying outcome after experiencing (and potentially re-experiencing) clinician-associated trauma. However, there is strength in numbers. If ten patients file the same complaint about a doctor, it is in the best interest of the hospital or medical organization to take some kind of action. Going through situations that cause clinician-associated trauma is terrible. Using those experiences to help make sure other people don’t have to experience them is one way to gain a little control over the situation.

Ask a patient advocate or a patient advocacy group for help. A patient advocate, sometimes known as a healthcare advocate or patient navigator, is a person who makes sure a patient’s care goes smoothly. A patient advocate can be employed by the hospital or medical system, work for an outside organization, volunteer for a non-profit, or be a friend or family member. Their main goal is you. A patient advocate can help you find medical, financial, or legal support; make, arrange, or go to appointments with you; organize transportation; make sure admission and discharge go smoothly; help you navigate the medical system; arrange for in-home care, equipment rental, meals, household help, and more; review medical records; cross-check medications; explain medical bills; handle insurance problems; go over options for care; and “guard against any of the many mishaps that make medical error one of the leading causes of preventable death in this country.” Patient advocates may have limits to what services they can provide, but this will be clearly stated up front. This is not someone who can make medical decisions for you, like a healthcare proxy, or someone who can provide medical care, like home healthcare providers. But, as the Center for Patient Partnerships says, “no one should have to go it alone.”

There are several places to find patient advocates. You can ask a friend, family member, or other caregiver to be your advocate. You can call your hospital’s or medical organization’s information line to see if they offer patient advocacy services. You can search their website as well. Sometimes there are local groups that offer patient advocacy services, like the Center for Patient Partnerships in Madison, WI, which offers several services, including advocacy. Many patient advocates can work remotely, depending on what you need them for. Other places to look for patient advocates (or become one yourself!) include:

(Note: Chronic Pain Partners does not endorse any of the above services. This is simply a list of some of the available healthcare advocacy associations and websites.)

Keep going up the chain. If the patient experience department isn’t helpful and there isn’t anyone else in the organization you can contact, go outside the organization.

Your state’s Department of Health should have a department that deals with complaints about medical providers. A quick search of your state government’s website should bring up the person to contact or a form to fill out. Here’s Wisconsin’s Department of Health Services website, and the ‘File a Complaint’ option is right on the home page.
Contact your state medical board, sometimes called the state licensing board. They have a complaint process.
Medicare has various complaint and grievance processes.
If the issue is happening in a long-term care facility, the state ombudsman’s office can help.

What Not to Do

Just as important as things to do to help you cope with or fight clinician-associated trauma are things not to do, like:

Indulging in bad habits or using substances to cope.
Reacting immediately. Sometimes we need a little time to calm down and get some perspective. An emotional reaction “in real time” can cause serious issues down the line, including dismissal from that doctor’s or clinic’s practice.
Sending off an emotionally charged message to your provider.
Using a doctor rating website. There’s nothing wrong with using a doctor rating website, but make sure the rating you’re giving is reflective of the care you received (or didn’t receive) and not based on an emotional response or unfairly making the provider sound terrible. There are many different things people expect from their providers, so the best thing you can do is report what happened as factually and unemotionally as possible.
Contacting a lawyer. Most lawyers know how difficult it is to prove psychological torment like clinician-associated trauma. It’s a “he-said-she-said” situation with little evidence. However, if the trauma you experienced—physical or mental—is due to clinical negligence, then a lawyer may be your best option.
Making it public. Sharing on your private social media is okay. Sharing on public social media is risky. Sometimes it can put pressure on the hospital or medical organization to act, but oftentimes, the message will be ignored or unsatisfactorily answered. Going to the local media to try to get your story told will end poorly and open you up to libel or slander lawsuits.

Clinician-associate trauma is something that no one should ever have to deal with. However, bringing the concept to life and recognizing the suffering patients who are repeatedly traumatized by the healthcare system are going through is a vital step in healing that trauma. The identification can also help create ways of combating and eliminating clinician-associated trauma. Each person will have their own way of dealing with the invalidating experiences suffered in the healthcare system, but when we all do a small part, that’s when big changes happen.

Kate Schultz
August 2024