The power of being heard
A lot of us will know the feeling of being unheard. Feeling like your concerns were falling on deaf ears and no one was truly getting it. Unfortunately, this is the case for many of those living with endometriosis. In fact, recent research aptly described that the experiences of endometriosis patients with healthcare providers are characterised by ‘trivialisation and dismissal of symptoms’, with research pointing to systemic limitations within the healthcare system as the reason for patients not receiving consistently empathic care (Brauer, et al., 2025). With experiences of not being heard so ingrained in experiences of endometriosis, it’s about time we talked about the power of being heard and why listening matters.
The healthcare system is something that remains mystifying for many of us. Combined with the confusing and still not well understood endometriosis, being an endometriosis patient can feel disempowering. The language of healthcare can be a mystery and when healthcare providers speak in jargon, that can feel disempowering, and it can feel like you have nothing to contribute. It can also be isolating to feel like you’ve entered this arena where it seems like you know nothing. It can feel like you’re not the expert of your own body. The fact of the matter is that a health professional is many amazing things, but only you are the expert of your own body. You know when something doesn’t feel right, you know when something isn’t working, and you know when you want something looked into. It is important to not minimise the role of being heard in your endometriosis journey, or any healthcare journey.
When you are being listened to, you come empowered as a patient. Your concerns, feedback, and queries are being listened to and taken seriously to inform your care. We know that you can feel powerlessness when you are not being listened to by your healthcare provider. Being heard allows you to gain back some of that power in a situation where it feels like a lot of things are outside of your control.
To finish, I want to leave you with some tips that might help you make yourself heard with your healthcare provider:
Prepare for your appointment. Try setting an agenda prior to your appointment. Write down the things you’d like to talk about and address. This can help to make sure you talk about what you want to talk about during the appointment. And prioritise! We know that appointments can be short so make sure you prioritise what you want to talk about most.
Ask questions. When the something is confusing or unclear, ask for clarification. If your doctor is explaining something to you using words you don’t understand, ask what those words mean. Ask as many questions as you need to.
Be honest. This can be easier said than done but if you have concerns, be honest and clear. For example, if your provider suggests a treatment option that you have concerns about, be honest and raise those concerns. Or, when your doctor asks ‘is there anything else you wanted to talk about?’ Be honest and speak up if there’s more you needed to talk about. Try to avoid dancing around your concerns and worries.
Be specific about your symptoms and describe how they are impacting you. Sometimes, it’s not that your provider is intentionally minimalizing or ignoring your symptoms. Sometimes, it’s a miscommunication. Try to be specific about whether you’re feeling sharp pain, dull pain, where is the pain located, how is it impacting on you, whether it’s impacting your ability to make it through the workday, etc.
Do not be afraid to get a second opinion. Remember, this is your care. If you’re concerned and you feel like you aren’t being heard, you can ask for a referral to see to someone else. This can be hard for some of us but it’s important to remember that we have a right to seek a second opinion. Or a third. Or a fourth. You can get as many opinions as you need to feel confident.
In short, having your symptoms or concerns dismissed or minimised, feeling unheard, feeling disempowered, does not have to be a core tenant of your interaction with healthcare providers, or of your healthcare journey more broadly. Although, it might sometimes feel like it. Whether it’s endometriosis, or anything else. You deserve to be heard, and you are entitled to make yourself heard and become empowered to participate in your care, to have a voice, and to be the expert of your own body.
References
Brauer, L., de Cruppe, W., & Geraedts, M. (2025). “Take me seriously”: A qualitative interview study exploring healthcare experiences of endometriosis patients. PLoS One, 20(5). https://doi.org/10.1371/journal.pone.0323883