Not seen? Not heard? Not believed? How to spot medical gaslighting and what to do about it.
If you have rheumatoid arthritis (RA), it’s most likely that you have had many medical appointments throughout your journey. With multiple medical appointments comes many conversations with healthcare providers. In a perfect world, your healthcare provider listens to your concerns, takes them seriously, and validates what you’re reporting, but what if you are not being seen, heard, or taken seriously? Let’s talk about what this means, how to recognize it, and what to do about it.
What is gaslighting?
Gaslighting is a term used in psychology for describing one’s experiences of doubt and manipulation that makes one feel that their lived realities are not accurate or valid. This term was popularized by a 1938 play written by Patrick Hamilton, called Gas Light, which was later adapted into a movie in 1944. The premise of the story is that a husband manipulates his wife into questioning her experiences of reality by dimming the gas powered lights in their home, while lying to her about doing it.
This term has evolved to have a more specific meaning when it comes to medical services. Medical gaslighting is when a healthcare provider ignores or dismisses your medical concerns. This can also include when a healthcare provider de-validates your medical concerns, convincing you to question your own thoughts, experiences, and reality. This can be intentional or unintentional. Medical gaslighting can cause ignoring of serious symptoms and even missed diagnoses, which can be life-altering and life threatening in some cases.
Although medical gaslighting can happen to anyone, it’s more commonly reported in women and people of color. Medical gaslighting is also reported frequently when a difficult or new diagnosis is involved, such as long COVID.
According to the National Domestic Violence Hotline examples of gaslighting would be
- Countering: Questioning someone’s memory of an event or experience. Asking “are you sure about that” “You know you have a bad memory” or “People can forget details easily.”
- Withholding: Refusing to listen or pretending to not understand the conversation. “You’re overcomplicating this and confusing me” or “I have no idea what you’re talking about.”
- Trivializing: Belittling or disregarding the extent or seriousness of the complaint. “You’re too sensitive” or “How bad is your pain, really?” or “You’re overreacting to this symptom.”
- Denial: Although uncommon in medical situations and more common in abusive relationships, this is when a person refuses to take responsibility for their actions. “I did not hurt you.”
- Diverting: This is when a healthcare provider questions the credibility of a patient. “This is nonsense, Dr. Google lead you down a rabbit hole.”
- Stereotyping: Intentionally, or unintentionally, using gender, race, ethnicity, sexuality, nationality, and age to make assumptions about a patient.
The big impact of not being seen, heard, and believed
If you have ever been ignored, not taken seriously, or medically gaslit, you know how small and unimportant this makes you feel. If your medical problems don’t get addressed, not being heard or being gaslit can have a huge impact on your health outcomes, too.
Gaslighting is real, and it happens, no doubt, however, the struggle with gaslighting is that sometimes patients may feel unseen and unheard, but for a different reason.
How can you tell true medical gaslighting from the other explanations of why you’re not feeling seen or heard?
You may feel unseen, unheard, and not believed when these things are happening:
- There are no more treatment options for your medical condition. There comes a point in all medical care that the treatment options are exhausted. This is very unfortunate, and also heartbreaking. You may feel that you are not being heard, but it’s possible that there are no more treatments, pain medications, or surgical procedures available to modern medicine to offer you.
- Sometimes healthcare providers are limited in how much testing they order by health insurance or resources available.
- Your complex medical problem may not be in that healthcare provider’s skill set or experience. All healthcare providers come from different backgrounds and experiences.
- You may be seeking specialized healthcare service from the wrong specialty. Sometimes a medical problem is very specific to a specialty and if you’re at the wrong one, they may not be giving you answers that you are expecting to hear.
- Keep in mind, many healthcare specialists are in short supply, and the appropriate specialist might not be easily available for you. You may have to ask what steps you need to take to escalate this through the proper channels to see who you need to see.
- Your healthcare provider was not given enough time for your complex medical problem. Be sure to be clear when scheduling that you need extra time for complex problems.
- Healthcare providers are under a lot of pressure to work faster and see more patients due to insurance reimbursements, profits, office/ hospital space, and many other factors. They may simply not have enough time in your short visit to cover your complex concerns.
When these things happen, you’re likely a victim of gaslighting:
- Your healthcare provider interrupts you frequently.
- Your healthcare provider refuses to order labs, imaging, and other testing for no reason.
- Your healthcare provider minimizes and downplays your symptoms, or tells you that they simply aren’t real.
- Your healthcare provider tells you that you’re over-reacting and that it’s not as bad as you’re reporting.
- Your healthcare provider may verbalize judgment or preconceived notions. This may include racism, sexism, ageism, or personal experiences.
- Although all healthcare providers take an oath to “do no harm” there is a lot of interpretation to where care fits into this. All providers don’t necessarily feel all of the feels.
Shining the light on gaslighting and not being heard, seen, or believed
If you feel your medical concerns are not being heard or taken seriously, no matter what the reason, there are steps you can take to resolve this.
- Find a good fit when it comes to your care. Be sure you connect and communicate effectively with all members of your care team. If it’s not a good fit, you may want to look for a different healthcare provider if there are alternate options available.
- Keep organized records and detailed, objective notes. Sharing facts about your symptoms and illness can help you be heard and taken seriously.
- Prioritize your questions. Sometimes gaslighting is confused with lack of time together, so be sure to get the most important information covered first. Be sure to lead with “This is very important to me” or “this has been life altering for me.” Try to avoid chit-chat as there is no warm-up or ice breaker when it comes to healthcare appointments!
- Ask questions about your diagnosis. If you’re not sure about something, ask another question. Be sure to ask what the next steps are and how your provider is evaluating if the current plan is working, too.
- Ask if your healthcare provider is comfortable taking care of your specific medical needs. You can ask if they have experience with this and if they want to continue to care for you, too.
- Ask your healthcare provider if you’re in the right place for this medical problem or symptoms. If they say you’re not, ask them where you should go.
- Do your research. Use plenty of different resources, especially peer reviewed and evidenced based ones. If you have research about a test, diagnosis, or treatment, this can help a lot. When you are presented with what you expected, you know you have been seen and heard, too.
- If the conversation seems to be going awry, redirect with phrases like “Can we pause for a second because I don’t think you heard me.” or “This has been altering my life for 3+ months, can we please try to figure this out together?” “What are all of the options, and which one are you suggesting from those?”
- Self-advocate and stand up for yourself when you need to. You can say things like, “Can you please repeat back to me your understanding of my complaints?” or “I don’t think we are connecting.”
- Bring a friend. A second set of eyes, ears, and another voice can be helpful. Be sure you’re clear with this person what your goals are so that you’re both on the same page through the appointment.
- Find a support group. This can be in-person or virtual. You will see and hear many different variations of what you’re going through. You will see many treatment options and real-life experiences with them, too. Most importantly, you’ll be validated and re-assured that you are not alone in what you’re experiencing.
- Report a neglectful healthcare provider. If they are simply not listening, and dismissing your legitimate medical complaint, tell them how you feel and then escalate to the appropriate people within the organization.
Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment. (2022). https://pubmed.ncbi.nlm.nih.gov/36092770/
When & Why Women & People Of Color Face Lower Quality Healthcare & Worse Health Outcomes. (2019).
A deeper look into gaslighting. (2019).
https://www.thehotline.org/resources/a-deeper-look-into-gaslighting/
Ahern, K. (2018). Institutional betrayal and gaslighting: Why whisteblowers are so traumatized.
https://nursing.ceconnection.com/ovidfiles/00005237-201801000-00014.pdf
What is gaslighting? (n.d.).
https://www.tcm.com/tcmdb/title/166/gaslight/#overview
Neprash, H. et al. (2021). Measuring Primary Care Exam Length Using Electronic Health Record Data.
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