You’re NOT Crazy: A look at Medical Gaslighting
Hello and welcome to my blog!
Today I am going to touch on a topic that often remains invisible, and therefore is a great danger lurking in the medical office. This dangerous practice has been around for centuries and will likely continue as long as we choose to tolerate and ignore it. I’m talking about medical gaslighting people! I unfortunately had a conversation with a new patient this week who has been told by doctors her whole life that she is “Just anxious”, “I don’t see anything wrong with you”, and “You’re too young to be in that much pain”. Uh, excuse me? When I finished my detailed history, physical, and orthopedic testing I found several things (including a sphenoid misalignment of course) that verified what the patient was describing. I was able to tell her, “You’re not crazy, your symptoms are real, and here is what your body is doing as well as how you can fix it”. When she started crying I was not surprised. This was not my first time having a patient break down with relief that someone FINALLY listened to them and validated how they were feeling instead of dismissing them and their health concerns. I hear about it from almost every new patient. “My doctor never believed me”, “I kept telling them I had pain but their MRI found nothing wrong”, or “They thought I just wanted drugs, but I just wanted them to figure out why this hurts”. I never realized how common this issue was until I started my chiropractic journey. As a chiropractic, we are usually the last “hail mary” before someone has to get a surgery or other unwanted procedure. The patient has tried their family doctor, the orthopedist, physical therapy, massage therapy, or ignoring the issue thinking it will just go away. Very rarely do I have a new patient come in saying, “I heard a chiropractor should look at this first”. Today, I wanted to discuss not only my own experiences with medical gaslighting as a patient, but how detrimental the practice can be to patients, and why chiropractic is a good option for those who are told “There is nothing we can do for you”.
Gaslighting is a term used when one partner tries to emotionally manipulate the other in an attempt to get the victim to question their own version of events or reality. The term “gaslighting” comes from a 1938 play Gas Light, and its 1944 movie adaptation Gaslight. In the movie, a husband manipulates his wife into near insanity by insisting that the things she experiences aren’t real or never happened. One of the ways he does this in the movie is constantly dimming their gas lighting throughout the house and insisting that the lights are full powered and bright. Hence the term “gaslighting.” Gaslighting has since been used to describe abusive and manipulative relationships and this type of communication is very harmful to a person. It can even be more painful than physical abuse (Fraser, 2001). It might be hard to imagine if it has never happened to you, but gaslighting can convince you that YOU are the crazy one, the problem, the abuser, the liar. It makes you question your version of reality. Gaslighitng is more likely to happen when there is a power differential in a relationship. A doctor patient relationship is no different.
Medical gaslighting is a term used to describe a provider who either deny’s the patient’s illness (“You’re too young to have breast cancer”), who blames the illness on the patient (“If you didn’t weigh this much your back wouldn’t be in pain”), or who tells the patient their symptoms are psychological, (“I can’t find anything wrong with you. It’s all in your head”). There is a long history of these experiences being especially common for women and minorities. The word “hysteria” is Greek for “uterus” and has long been used to describe women who complain “too much” about their mental or physical health (Gaslighting in women's health, 2022). “Hysteria” was also a common diagnosis for a doctor to give a woman who was “too emotional”, who got angry, experienced anxiety, or had any type of desire for anything other than being a good wife (her own hobbies, the desire to exercise, spending too much time in nature, focusing on a career, desire for sex. etc). Doctors might not diagnose patients with “hysteria” anymore, but instead diagnose things like PMS, instead of investigating the patient's symptoms. This is a diagnosis that often is dangerous and classifies a person as “hysterical around that time of the month” and dismisses their symptoms as being related to hormone issues or being all in the woman's head. It is not helpful that the majority of medical research is conducted by white men, on white men and this practice excludes the valuable experiences of other genders and minorities. Individuals who have auto-immune related conditions are often the most prone to gaslighting. These conditions are usually plagued with non-specific symptoms such as fatigue, weight loss or gain, and chronic pain (Jacoby, 2022). Without proper medical investigation, these patients can go untreated for months, years or even decades.
For example, I had a patient who was having severe right sided rib cage pain for several months. She asked her family doctor for a mammogram due to her family history of breast cancer. Since she was “too young” for her insurance to cover yearly exams, he told her she needed to stretch more and drink more water and her pain was most likely due to carrying her newborn all the time. I attempted to treat the injured area for several visits before ordering an X-ray. At the time, I did not think the patient needed an X-ray but she was sure something was wrong. We discussed her concern and I wrote a script for a chest film. I was happy I listened to my patient because she had a metastatic tumor that had obliterated her fourth rib. She was able to begin chemo immediately. I was just as surprised as her family physician to find the cancer, the difference was I believed that my patient knew her body better than I did. How long had she been living in her body? 32 years? Yeah, I think she knows it better than I can and if she says something is wrong, I’m going to believe her and investigate it to the fullest. Maybe the difference between her family doctor and myself was also that I have been ignored and gaslighted by physicians for years and knew what it was like to be told “you’re crazy” and that “it’s all in your head”.
I remember liking my pediatrician when I was young because my mom heard he was “The best in the business”. He was always 45-50 minutes late but he had fun toys to play with or pictures to look at. He would briefly come into the room and check whatever was wrong (I had ear infections frequently) and he almost always prescribed an antibiotic before flying back out of the room. I never had any serious complaints until middle school after receiving the Gardasil vaccine. Within 24 hours I had a serious vaccine reaction and had residual seizure symptoms for over 8 months. It was difficult for me to describe what was happening because it involved a lot of staring spells or involuntary movements that were worse with emotional stress. He denied that the vaccine (which I received at 12 and it was not yet approved for my age) had resulted in any issues and I was just “anxious”. When I started my menstrual cycle at 15 and had severe debilitating pain that kept me out of school for the day, as well as headaches, severe anemia, and stomach pains that would last weeks, he again said it was just anxiety and I needed to get used to “womanhood”. The last visit with my pediatrician was in 2011 when I needed an updated vaccine record. I started to tell him about these painful heart palpitations and chest pains I was having. It started after running for only a minute or so and I felt like I was going to pass out. He told me I had a history of doing this. I was too young to have heart issues. If I had a heart problem he would have found it when I was younger and I really needed to work on being less anxious about my health. I remember feeling humiliated and confused. I didn’t mean to make him upset or to make him feel like he wasn’t a good doctor.
It took me a long time to unpack those interactions and to realize how much they hurt my trust in doctors. Years later I am still weary of most physicians due to these past experiences and others like it. I have not seen a primary care physician since 2011. I had a really hard time connecting to my body after that visit and just “dealt with” the symptoms for another five years before seeking any treatment. It turned out I wasn’t crazy and it was a chiropractor who validated every one of my experiences and was able to explain what was happening. They helped me see a neurologist as well as a surgeon for my shoulder. My life changed after my doctor believed me and helped me treat what was going on. I knew I wanted to be a doctor like that. One who believes their patient and who will investigate until they find answers.
There are ways for patients to help fight back against medical gaslighting. Try talking about your concerns with your doctor. Let them know how they are making you feel and what you need from them to feel heard. Many doctors just get stuck in the grind of their work and when you ask them to look and pay attention, they usually will. If it is a physician who is especially stubborn, I learned to ask the doctor to write down in their visit notes why they won’t order a test, “If you think my blood work would be normal, then write down that you refused to order me a blood test”. Nine times out of ten they order the test. Another way to fight back against gaslighting is to take an advocate with you to your visit. Having another person who cares about you in the room such as a family member, spouse, or friend, can help you feel more at ease. Plus, it never hurts to have another person to remember questions you have, to recall the information from the visit, or to advocate for you if the doctor is being dismissive. It also never hurts to remind your doctor that, while you respect their expertise, you are still the expert of your own body. YOU know what is normal for you and YOU know what works for your body.
The most important thing to always remember is that it is NEVER your fault or your job to insist upon proper treatment. While the insurance companies may restrict your options of who you can see within your plan, you can always seek out another doctor who will listen to you and treat you with respect. If your doctor doesn’t treat you like family, find a new one. If your doctor dismisses your concerns, if they won’t believe your symptoms, or they don’t seem interested in finding out how to treat or prevent your concerns, then find a new one. If your doctor is out of touch with current literature, diagnostic criteria, or treatments then find a new one! Your doctor is supposed to be someone who you trust, who you can come to comfortably with questions. Your doctor should always take you seriously and should always make you feel heard. While I cannot be your Primary Care Physician due to PA law, I will ALWAYS listen and respect what you are telling me about your body! If I do not, CALL ME OUT ON IT! HOLD ME RESPONSIBLE! I guarantee you that I will apologize profusely and correct my behavior, just as every doctor should. I will advocate for you to your other doctors and I have several physicians in the area who I can refer you to if you need a good doctor.
Please comment below on this blog post, Facebook post, or Instagram post if you are comfortable sharing how medical gaslighting has affected you. If your story helps just one person to know that they’re not the only one who has been through this, it will be worth it. If you have concerns about your health that your family doctor hasn’t taken seriously, please bring those concerns to our office, or email me at drsupershouse@gmail.com so that we can assist you in finding answers, resources, or a new provider. I offer free consults. You deserve to be provided with the best care possible in all aspects of medicine and if I can, I will help you find it.
Feel well and do good,
ADIO
Dr. Tabetha Super
References:
Britannica. Gaslighting. https://www.britannica.com/topic/gaslighting
Fraser S. (2021). The toxic power dynamics of gaslighting in medicine. Canadian family physician Medecin de famille canadien, 67(5), 367–368. https://doi.org/10.46747/cfp.6705367
Gaslighting in women's health: No it's not Just in your head. Katz Institute for Women's Health. (n.d.). Retrieved April 21, 2022, from https://www.northwell.edu/katz-institute-for-womens-health/articles/gaslighting-in-womens-health
Jacoby, S. (2022, March 14). How to navigate 'medical gaslighting' when doctors dismiss your symptoms. TODAY.com. Retrieved April 24, 2022, from https://www.today.com/health/health/medical-gaslighting-doctors-dont-listen-rcna19649