Medical Gaslighting
“It’s all in your head”
“You’re avoiding [insert responsibility here]”
“You don’t look sick”
“You just want attention”
“You’re stressed”
“It’s just a bad period”
“Have a glass of wine”
“Calm down”
If you’ve heard these phrases (or anything similar) in a medical setting, you’ve likely been exposed to medical gaslighting.
What is medical gaslighting?
Medical gaslighting is the experience of having your physical symptoms and concerns invalidated and/or disregarded by a medical professional. It can be subtle and difficult to spot or it can be overwhelmingly obvious, yet hard to manage, especially while simultaneously navigating your physical health. Medical gaslighting is unique in that there is an innate hierarchy within the dynamic of patient and doctor; the patient is ultimately submitting themselves to the expertise of the doctor, creating a space of true vulnerability. The hope is that they are met with empathy and a collaborative spirit, however, that may not always be the case. With medical gaslighting, patients often experience feeling as though they aren’t being heard or understood, that their questions aren’t being answered, and that their symptoms are being minimized and/or are being blamed solely on mental health, as if the brain and body aren’t intrinsically connected and worth treating in tandem.
I was 15 when I first experienced medical gaslighting. I was being treated for endometriosis, which is the presence of endometrial-like tissue found in other parts of the body. It latches onto organs, creating adhesions and scar tissue that can cause detrimental pain and infertility, among other things. It’s a sneaky disease in that it doesn’t show up on tests or imaging and can only be properly identified through surgery, deeming it an “invisible illness.” At the time I was being treated under the assumption that hormonal therapy diminishes the disease, reducing symptoms and allowing the patient to return back to life-as-usual. (I have now come to learn that is simply not the case, however, I digress…) This was why when I was still in immense pain doctors continuously threw their hands in the air and placed the blame on the shy, teenage girl, desperate to get back to regular teenage antics.
The following statement was pulled directly from my medical records, written by the lead doctor appointed to manage my pain, “I note that a large behavioral component to her complaints was reinforced today by yet again seeing that despite the fact that she feels so terrible that she is made up extremely nicely, has lots of energy and appears perfectly comfortable and moves very freely. We will continue to follow this, and hopefully she will benefit from interactions with the psychology team.”
This doctor, along with many others, had trouble recognizing invisible illness. He could not see my disease and refused to listen to the verbal cues I was providing. What he didn’t consider was that I was a 15 year old girl who had lost control of her entire life and found comfort in controlling her physical appearance, or that I was able to “move freely” because when you’re living with pain every day you simply don’t have a choice. And what I didn’t consider until much later (after therapy, of course) was that I never stood a chance with him as my medical provider. In hindsight, I felt his ambivalence towards me from day one, which created a cycle of anxiety and fear. I was not greeted with a collaborative spirit, but instead was conditioned to accept that I was not the expert on my body, making me hesitant to ask questions and advocate for my needs for fear of stepping on toes and upsetting those in power. It was an uphill battle with the added layer of debilitating pain. In other words, the odds were not in my favor.
Who is impacted by medical gaslighting?
Medical gaslighting can happen to anyone, however, through a lack of knowledge, proper representation in research and various biases, women (especially women of color or people in the LGBTQIA+ community) are often the unfortunate recipients of this experience. This can be traced back to how medical professionals are being educated. Through a significant lack of proper representation in medical curriculum (did you know that women weren’t required in U.S. clinical research until 1993!?), medical professionals have been conditioned to believe that women’s health issues are directly related to their mental health, their weight, and/or lack of self care, which leads to a significant delay in effective treatment.
Simply put, women’s health isn’t “by the book” and therefore isn’t able to be treated properly. In many cases of medical gaslighting, all that exists for the patient is a required level of acceptance for physical and emotional pain as part of their narrative. And while acceptance may be the case in many situations, seeking answers and clarity is still your right as a patient.
What can I do?
If you find yourself experiencing medical gaslighting or are feeling anxious about entering into a medical setting after previous experiences with medical gaslighting, here are a few things you can do before, during, and after to ensure you are getting the care you deserve.
Keep detailed notes and records. Track your symptoms – what are they? When do they occur? Are there any known triggers? If you have pain, what does it feel like? Sharp, dull, constant? This can be done on your phone, in a journal, or on a loose napkin you found in your purse!
Ask for and maintain all lab results - your body, your results.
Ask questions! Come prepared with a list of questions that you want answered in your appointment. It can help to start the appointment with something like “Hi, I have come with a list of questions I’d like to go through with you today.”
Bring someone with you. If you’re anything like me, you can get easily overwhelmed in a doctor’s office. Bring a friend, partner, or family member who you trust to help advocate for you. Make sure you have a conversation with them beforehand about what your goals are for the appointment.
Identify next steps with your provider in your appointment (this can be one of your questions on your list!) What testing needs to be done? When will you be seen again? What medications do you need?
Switch providers. If it doesn’t feel right, switch providers. Get a second, third, or fourth opinion. Trust. Your. Gut.
If you have a diagnosis (formal or informal), find and join a support group! Support groups are filled with people that have walked a similar path. Other members might even be able to provide you with contact information for doctors they have had positive experiences with.
It is important to remember that you are the expert on your own body - no amount of medical school makes someone more knowledgeable about your unique experience. Trust what it is telling you and advocate for what you need when you need it.
It can be a very daunting experience managing physical symptoms while also navigating medical gaslighting. It’s easy to lose hope, which in this setting can mean a cure, a treatment, or simply an answer. Hope requires a willingness to fight and an acute awareness of your illness; tracking how you feel, when you feel it, and what may have caused it. It can mean understanding that seeking answers leads to exhausting trial and error. Simply put, it can be a lot. We understand that this is a heavy load to carry, so we are here to support you. If you need help processing medical gaslighting, illness, or working towards advocating for your needs, reach out to us and connect with one of our therapists who would be happy to help guide you on this journey!
