Medical Gaslighting in Endometriosis and Adenomyosis: An Interview with Nina Reiter

Today, I have the privilege of speaking with psychologist Nina Reiter, a distinguished expert in the fields of endometriosis and adenomyosis. Our focus for this conversation is “Medical Gaslighting” and its relevance to women’s health. Throughout the interview, we will delve into the meaning of this concept and its connection to the world of endometriosis.

Dr. Nadine Rohloff: Welcome! In today’s episode, we are honored to have Nina Reiter as our guest. I am thrilled to have you here today. Would you like to provide a brief introduction?

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 have 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 illness 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 these conditions. Since October, I have introduced my inaugural group program because I believe that increasing accessibility to the topic 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.

Dr. Nadine Rohloff: Indeed, we have a multitude of topics to explore, but today we’ve chosen one that, despite its age, remains relatively unfamiliar and has only recently gained recognition by its name. Our focal point today is “medical gaslighting.” Could you provide a concise explanation of what it encompasses and the dynamics at play?

Nina Reiter: Ja, du hast es schon gesagt. Das ist für uns vor allem im deutschsprachigen Raum ein total neuer Begriff. Medical Gaslighting ist im englischsprachigen Raum schon ein bisschen bekannter und bei uns nimmt das Bekanntwerden des Ganzen gerade erst Fahrt auf. Der Begriff Gaslighting kommt in einem amerikanischen Film namens Gaslight vor. Dort geht es um die Frau eines mächtigen Mannes, der ihr überlegen ist. Sie wird von ihm so in die Irre geführt, dass sie glaubt, sich alles nur einzubilden und verrückt zu werden. Daher wurde dieser Begriff für eine Situation übernommen, in der ein Mensch mit Macht über dich versucht, deine eigene Realität abzustreiten. Wenn wir uns die Definition anschauen, dann ist es im Prinzip so: Wir haben eine Situation, in der medizinisches Fachpersonal, vor allem Arztpersonen, die Probleme und Symptome einer Person nicht ernstnehmen oder sogar als unwahr abtun. Diese werden dann auf eine psychische Erkrankung geschoben, die vielleicht gar nicht vorhanden ist. Oder es kann auch gut sein, dass eine psychische Erkrankung vorhanden ist und die Symptome einfach darauf geschoben werden, anstatt nachzuforschen. Das passiert oft, ohne dass es triftige Gründe für die Annahme gibt. Natürlich gibt es psychosomatische Erkrankungen, keine Frage, aber diese liegen in diesen Fällen oft nicht vor. Es kann gut sein, dass die Person gar nicht genau untersucht wurde und abgestritten wird, dass sie an einer bestimmten Krankheit leiden könnte. Oft werden die Symptome auch auf etwas anderes geschoben. Der Klassiker dafür ist Übergewicht. Bei ganz vielen Erkrankungen passiert es, dass die Mediziner:innen das Übergewicht in den Fokus rücken und alles andere in den Hintergrund tritt. Wenn das Übergewicht aber gar nicht die Ursache der Probleme ist, wird die tatsächliche Erkrankung durch Gewichtsabnahme nicht behoben. Das ist insoweit die Definition, die wir haben. Ein Problem, was man gesamtmedizinisch haben kann, aber was vielleicht bei von Endometriose Betroffenen häufiger vorkommt. Es wird oft berichtet, dass Frauen sich nicht ernst genommen fühlen oder auch einfach nicht ernst genommen werden. Das Gefühl ist in den meisten Fällen berechtigt. Die Frage ist, warum das passiert. Das sollte ja eigentlich nicht so sein.

About Nina Reiter

Nina Reiter personally grapples with endometriosis and combines her roles as a psychologist, aspiring systemic therapist, coach, yoga instructor, and an authority in relaxation techniques. Her journey through her ailment has led her to explore the realms of pain management, acceptance, and cultivating trust in the body over many years. Today, she generously imparts her insights and knowledge to those facing similar challenges. Her objective is to empower individuals living with chronic conditions to construct the lives they aspire to lead.

Dr. Nadine Rohloff: Indeed, it absolutely should not be the case, and you make a valid point. Understanding the reasons behind this phenomenon is undoubtedly complex. It is often a consequence of the system within which physicians must operate, frequently characterized by time constraints and the immense pressures they themselves face. In some cases, doctors may find themselves tending to an overwhelming number of patients daily. The constant stress can gradually desensitize them and erode their capacity for empathy. When individuals present with recurring symptoms, doctors might not listen as attentively, assuming they already comprehend the situation, and their empathetic response diminishes.

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 not excusable. 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. They 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 the diagnosis much more challenging. Furthermore, treatment options are often lacking, even after a diagnosis is made, as is the case with endometriosis.

Dr. Nadine Rohloff: I sense a feeling of helplessness on the part f doctors as well, and I agree with your perspective. It seems that sometimes it is easier to dismiss complaints. It is not an excuse, but it is a systemic issue that can develop, especially among doctors less familiar with it.

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 directly specialization in areas like endometriosis, as their focus is typically elsewhere.

Dr. Nadine Rohloff: Indeed, considering the prevalence of this condition, it is absolutely crucial to integrate it into the comprehensive training during residency.

Nina Reiter: Absolutely, and it is essential to acknowledge, that we, as humans, are susceptible to biases. In psychology, there 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.

Dr. Nadine Rohloff: This further underscores that is a pervasive issue.

Nina Reiter: Absolutely, it is a reminder, that we, as humans, are not always objective, and this applies even more to physicians.

Dr. Nadine Rohloff: This is indeed a substantial problem, and regrettably there is no quick fix for it. What can individuals experiencing this kind of dismissal do when they feel their concerns are not being taken seriously?

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 simply 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 them 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.

Dr. Nadine Rohloff: Absolutely. We have a community question related to this: “How can I provide constructive feedback that medical gaslighting or not being taken seriously is not acceptable?”

This is a compelling question. What is the best way to communicate this for the most effective outcome?

Nina Reiter: It is not a straightforward question to answer. Physicians can often feel attacked rather quickly, and I can understand that to a certain extent. Many patients conduct online research before their appointments, sometimes formulating theories that may seem far-fetched or requesting tests that do not make sense. This can make doctors feel challenged, leading to defensiveness or even hostility, as they attempt to counter these suggestions. Initially, this is okay. To approach this constructively, it is advisable to be open and honest about what you are experiencing. Using “I-messages” is a good starting point, such as “I am experiencing this, and I wish we could explore this avenue.” Based on my own experience, I know that conversations are often not that simple. Writing an email can be a useful alternative. In the email, explain what you have experienced and maybe even provide the definition of medical gaslighting to back up your concerns. Once again, stay factual and avoid making accusations.

In the moment, you can also be clear and say, “I want you to take what I say seriously. I have thought about this a lot, and I am asking you to listen to me.” Sometimes, a simple sentence like that can make a doctor reconsider and think, “Okay, I will give this more attention.” However, there are cases where you can be as constructive as you want, and it does not immediately resonate with the doctor. In such situations, it is not your responsibility. The situation might be complex because the doctor thinks, “I need to move on; I do not have time for this right now. What does the patient want from me? I have not done anything wrong. We are just normal people.” When you are questioned, it is natural to feel attacked. Therefore, writing beforehand can be a helpful alternative.

Many affected individuals may not feel comfortable enough to address the issue directly during the appointment, and that is perfectly okay too. Physicians have more power and knowledge in this dynamic, and they are there to assist and guide us. Thus, it creates a conflict when we attempt to guide the physician. These are some tips for providing constructive feedback in such situations.

Dr. Nadine Rohloff: Yes. Those are excellent tips. Writing can indeed provide the opportunity for the other person to reflect before becoming defensive. We have another community question: “How can I make my partner aware of medical gaslighting? How can I discuss it within the partnership, especially when it is challenging?”

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 that 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 the partner 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 with the endometriosis association. Assistance and guidance are available at endometriosis centers or through the Endo-App. You also so 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 others 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 can explore these traumas in my coaching sessions, as they are a genuine concern for many individuals.

Dr. Nadine Rohloff: Yes, exactly. I think the most crucial aspect is finding the support to come to terms with what has happened and relearn that those experiences were not right. Now, here is a question about legal recourse: “Can I take legal action, file a complaint with the medical board, and when is it advisable to do so?”

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 may be necessary. You can also file an official complaint with the medical board, request an expert evaluation, and have the relevant information sent to an expert or assessor who evaluates 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 when an organ, though not vital, was removed, you can 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 medical malpractice, 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 fairly promptly. Filing a complaint with the medical association is a relatively 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.

Dr. Nadine Rohloff: Yes, I believe it is an excellent idea to classify such situations. When minor issues arise in conversations, it is appropriate to address them directly with the doctor or clinic management. However, when certain verbal or physical boundaries are crossed, it is essential to report them and take legal action if necessary. Determining when it is justified and when it is worth going to court in individual cases is indeed challenging. Consulting with a specialist is crucial in making that determination. Nevertheless, providing feedback should always be a part of the process. I understand that it can be quite difficult, but it does not have to involve confrontation. If you do not feel taken seriously, it is in your and everyone’s best interest to speak up. If you have the capacity, putting it in writing, such as through a letter, can be effective as well. This helps elevate the issue to a higher level. It is essential to remember that such incidents are not your fault, but expressing your concerns can be empowering, and it is crucial to voice your concerns. The medical association can handle your report and investigate further.

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, that is perfectly acceptable, and providing feedback is a valid way to address these issues. It is not about being angry 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.

Dr. Nadine Rohloff: I have nothing more to add. I believe that is a good concluding remark. It is essential to discuss this issue, which is why we addressed it today. Engage in conversations among yourselves to provide support, with your loved ones, and also with healthcare professionals, in as constructive manner and as frequently as possible.

Thank you, Nina for dedicating your time, and I am delighted that this discussion came together today.

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!

Nina Reiter: Thank you, dear Nadine. I was thrilled to be here, and please have no hesitation to reach out if you have any questions. If you are interested in what I have to offer, you can find me on Instagram at compassion Coaching or on my website.

You can now track your daily well-being with the Endo-App.

Click the button below to access the Endo-App, which is currently available free of charge for individuals with endometriosis.

If you have questions or comments about medical gaslighting related to endometriosis and adenomyosis, please do not hesitate to leave a comment. Your input is valuable to us.

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Dr. med. Nadine Rohloff