Young woman talking with gynecologist in the doctor's office
Nina Reiter: Thank you so much for the invitation, Nadine. I am a huge admirer of your work, and I am genuinely excited to be here today. As you’ve mentioned, I go by the name Nina Reiter, and you may recognize me from my Instagram page, Compassion Coaching. I wear multiple hats as a psychologist, systemic coach, yoga instructor, and I am currently in the process of becoming a therapist. Drawing from my personal journey, I also specialize in addressing the challenges of endometriosis and adenomyosis. Those who grapple with these conditions understand the extensive array of difficulties they entail. We have come to appreciate that they involve various psychological facets and consequences. Living with a chronic condition adds layers of complexity to many aspects of life. This is where counseling, coaching, and even therapy can be invaluable. I find great fulfillment in working with individuals affected by endometriosis and adenomyosis. Since October, I have introduced my inaugural group program because I believe that increasing accessibility to these topics is crucial, particularly for those with limited resources. My primary focus centers on relaxation techniques, which I consider paramount. Chronic conditions often bring about heightened stress and unique challenges. I have witnessed this in my personal journey and in the individuals I have had the privilege of working with. Developing effective methods for navigating life’s circumstances is of utmost importance to me.
Nina Reiter: That is certainly one aspect of the issue. However, it does not excuse or explain the disrespectful or inappropriate behavior that often occurs. If you ask within the community or search online, you will encounter countless stories of individuals who have been mistreated by medical professionals. This is inexcusable. Another part of the problem lies in our unequal society. We continue to exist within a patriarchal framework, and women have been historically and are still subjected to this system’s constraints. Women are frequently dismissed as overly emotional, too sensitive, or prone to hysteria, under the pretext of which their complaints are not taken seriously. All of these factors contribute to the problem. I am certain there are myriad and multifaceted reasons. Additionally, there are conditions for which no specialized tests exist, making diagnosis much more challenging. Furthermore, treatment options are often lacking, even after a diagnosis is made, as is the case with endometriosis.
Nina Reiter: Absolutely, and pain is inherently subjective. Moreover, there is a prevailing misconception, even among gynecologists, that severe period pain is considered normal. I continually hear them downplaying it, saying, “It is just part of the deal.” In reality, as Dr. Mechsner from Charité emphasized, we need to ask, “When does pain cease to be normal?” Naturally, there is a gray area where a certain level of pain during menstruation is expected. However, when it surpasses that threshold, it is not normal, and there is an underlying issue that needs to be explored. Nonetheless, this is a very subjective matter, and if you are not well-versed in it, it can be challenging to address. It is further complicated by the fact that doctors often have to be generalists, seeing a wide range of conditions daily, without direct specialization in areas like endometriosis, as their focus is typically elsewhere.
Nina Reiter: Absolutely, particularly regarding the issue of pain. We need a concerted focus, a strategy that should be mandated at the policy level and incorporated into ongoing education. It cannot solely be the responsibility of individuals to educate themselves. In an ideal world, that would be the case, but human behavior does not work that way.
Nina Reiter: Absolutely, and it is essential to acknowledge that we, as humans, are susceptible to biases. In psychology, these are referred to as heuristics, which are unconscious mental shortcuts we use to simplify decision-making. Many biases come into play in these situations. There is the bias where women are often dismissed as being more sensitive. Additionally, there is a lack of extensive statistics or data on medical gaslighting, but we do observe that women and people of color are more frequently denied the recognition of their illnesses compared to men.
Nina Reiter: Absolutely, it is a reminder that we, as humans, are not always objective, and this applies even more to physicians.
Nina Reiter: It is a complex question, and there is no simple answer. I would suggest that if you find yourself in a situation where you are not being taken seriously, or you suspect manipulation, it is best to step away from that situation, especially if it is overwhelming. Phrases like “It is all in your head,” “You are making a fuss,” or “Do not exaggerate; it is just a part of being a woman” are often heard. I have heard them too. If you are comfortable with confrontation, that is an option, but I would recommend stepping away from the situation first. Take some time for yourself to reflect on what transpired. Always discuss it with someone. Do not keep your fears, worries, and the pain it causes to yourself. You turn to a doctor with the belief that they will help and be there for you, creating a safe environment. I do not question their good intentions, but it is best to step away from the situation first, reflect with someone else, seek support, even if you do not have someone close to relate to. Consider reaching out to the community; it is often a valuable resource when dealing with endometriosis. Coaching might also be helpful. There are various options available.
Additionally, it is essential to consider changing the healthcare provider. Seek a second opinion. If you suspect you have endometriosis, consider going to an endometriosis center rather than regular or untrained doctors. The diagnosis is often more challenging for them. If you have the opportunity, I would highly recommend it. If changing doctors is not feasible, look for a gynecologist in private practice who specializes in this field. This may not always be an option, especially in smaller areas. When visiting the doctor, always bring someone along for support – a family member, friend, partner, so you do not go alone. Prepare for the appointment by documenting your symptoms, bringing records, and always referencing them. In the community, there are stories of women previously diagnosed with endometriosis going to new doctors who say, “You do not have endometriosis.” Then you present the surgical report, and they realize it is there. Good preparation is undoubtedly beneficial.
It is also helpful to remain calm and factual, although it is not always easy, and it is understandable if you become emotional. If medical professionals treat you disrespectfully or deny your pain, it is entirely okay to express your emotions. However, people usually respond better if you remain calm and factual. Taking notes during the appointment can be useful, so you can reflect on it later and jot down any questions that arise. If you do not feel taken seriously, there is nothing wrong with addressing it and saying, “I do not feel like I am being taken seriously, and I would appreciate a different approach.” Even if met with reluctance, it is a perfectly legitimate course of action.
It is a challenging question. What is the best approach to effectively communicate this?
Nina Reiter: This is indeed a complex question to address. Physicians often tend to feel attacked relatively quickly, and I can understand this to a certain extent. Many patients conduct online research before their appointments, sometimes forming theories that may seem far-fetched or requesting tests that do not align with conventional medical wisdom. As a result, doctors may feel questioned, leading them to become defensive or even confrontational.
To approach this constructively, it is advisable to be open and honest about your experiences. A good starting point is to use “I-messages,” such as “I am experiencing this, and I wish we could explore this avenue.” However, I acknowledge that conversations are often not that simple. In such cases, writing an email can be a valuable option. In the email, describe your experiences and perhaps include an explanation of what medical gaslighting is to provide a clear definition. Once again, it is crucial to stay factual and avoid making accusations.
In the moment, you can also be direct and say, “I want you to take what I say seriously. I have thought about this extensively, and I request your attention.” Sometimes, a simple statement like that can prompt the healthcare provider to reconsider their approach. However, there are instances where you can be as constructive as possible, yet it may not resonate with the doctor at that moment. In such cases, the responsibility is not yours alone. The situation might be complicated because the doctor thinks, “I need to move forward, I do not have time for this now. What does the patient expect from me? I have not made any errors. We are all ordinary individuals.” It is natural to feel attacked when questioned, and that is why writing beforehand can be a helpful alternative.
Many individuals affected by medical gaslighting may not feel comfortable enough to address the issue directly during the appointment, and that is perfectly acceptable as well. In this dynamic, physicians hold more power and knowledge, and they are there to assist and guide us. So, it creates a conflict when we attempt to guide the physician. These are some of my tips for providing constructive feedback.
This can be particularly difficult with partners who may not perceive it or may engage in similar behavior, just not in a medical context. Where can one find support?
Nina Reiter: I assume the person asking this question likely finds it challenging to broach the subject with their partner, and I can understand that. Especially when discussing it in person is difficult, a helpful approach is to listen to this podcast episode together. Let someone else explain what medical gaslighting is, its underlying causes, and share stories about it. There are a few clips on YouTube, primarily in English, that delve into the topic and share stories. I believe it is important to convey the severity of the issue, including the dire medical consequences that can arise when doctors fail to take patients seriously. In the endometriosis community, there are cases where many preventable complications occurred. These complications would not have arisen if the healthcare provider had taken the matter seriously and emphasized its prevalence, reassuring patients that they are not alone. It is essential to communicate openly and honestly about these aspects if the partner is open to it. However, there are situations where they may not be receptive to hearing about it, and that is okay for the moment, even though it is challenging.
Support can be found in the community, particularly through other women involved with the endometriosis association. Assistance and guidance are available at endometriosis centers or through the Endo-App. You also have numerous informative blog articles and podcasts on the topic. There are professionals like myself who specialize in counseling people with endometriosis and adenomyosis. Several therapists are now working in this field. Many accounts on platforms like Instagram are open to questions and discussions. Numerous courses offer the opportunity to connect with other individuals dealing with the condition, and sharing your experiences with fellow sufferers can be quite therapeutic. Support groups can be beneficial as well. In some cases, therapy can be helpful, especially when medical gaslighting leads to significant psychological distress alongside a chronic condition. This is particularly true when you have been told for years that you are mentally ill and imagining everything, that your pain is not real, and you have questioned your reality. Even after receiving a diagnosis, the belief that something is inherently wrong with you and that you have imagined everything may persist. Traumatic experiences can arise from these circumstances, and therapy can be a valuable avenue for addressing them. We also explore these traumas in my coaching sessions, as they are a genuine concern for many individuals.
Of course, this is a complex question.
Nina Reiter: It is not easy to determine exactly when to take such action. However, you can certainly report it to the medical association or your health insurance. If you wish to pursue legal action, then involving lawyers is a possibility. You can also file an official complaint with the medical board, request an expert evaluation, and have all the relevant information sent to an expert or assessor who assesses the case. The process is not always straightforward. For instance, I know someone who had their appendix removed when it was actually endometriosis. In such cases, you may argue that you underwent an unnecessary surgery. In cases where an organ, though not vital, was removed, you can attempt to claim a medical error. While it is not always simple, it is possible. This process is known as a medical malpractice claim, and it necessitates demonstrable evidence of it occurring, which is typically established through expert opinions. Legal action is certainly an option. The specific steps to take vary depending on the circumstances, and you will need a lawyer to support your case.
Regarding when to take action, the question was about the timing of reporting such incidents. I believe you can report them relatively promptly. Filing a complaint with the medical association is a fairly quick process and can be done on their website. If a doctor repeatedly treats you disrespectfully, denies you necessary care, provides incorrect treatment, or insists that your issues are all in your head and psychological, it is entirely appropriate to report such incidents. The timing of reporting largely depends on your own feelings about when your boundaries have been violated. However, one thing is clear: if someone attempts to intimidate or manipulate you, these are definite red flags, and reporting such actions is highly advisable.
Nina Reiter: You have touched on something incredibly important. Women often hesitate to create problems or question medical professionals. However, it is vital to bring attention to these issues. Hospitals and the medical association should recognize that this is a genuine problem that needs to be addressed. We are allowed to assert ourselves; we are not troublesome or disobedient women, and we are not demanding patients. Even if we were demanding patients, that is perfectly acceptable, and providing feedback is a valid way to address these issues. It is not about being angry or seeking retribution; it is about acknowledging that something is not right. Tattling on someone might have negative connotations from childhood, but in cases like this, it is the only way things can change. We need to initiate these conversations.
You are welcome to share your stories, both positive and negative. It is crucial to acknowledge that some people have positive experiences with their doctors. However, there are unfortunately far too many negative stories. But it is important to highlight that there are healthcare professionals who take these issues seriously. We will include links to endometriosis centers and community recommendations below this post. Please send us your questions. Thank you very much!
Click the button below to access the Endo-App, which is currently available free of charge for individuals with endometriosis.
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