By Alana Ireland and Alana Wolframe

Many of us have experienced some kind of difficulty when navigating healthcare or the healthcare system, and a difficult experience can sometimes leave us feeling like we need to prepare for the worst the next time we need to make an appointment. We want to first be clear that this blog is in no way intended as an attack on our system or the individuals who work in it. It’s simply to acknowledge that at times, people can feel unheard or uncertain about how to ask questions or raise concerns during an appointment. The experiences some people have faced in healthcare can feel intimidating and can make it challenging to know how to advocate for yourself without walking into every appointment or healthcare interaction assuming that your healthcare provider will dismiss or misunderstand you.

It’s not about becoming more suspicious, confrontational, or prepared for a fight. Sometimes self-advocacy is needed because someone has experienced a problem in their care, including stigma, discrimination, dismissal, or another barrier. But advocacy doesn’t always mean something has gone wrong. Sometimes it is simply asking a question you were hesitant to ask, sharing a concern you weren’t sure was important enough to mention, or saying that you don’t understand something rather than staying quiet because you’re worried about how your provider might respond.

Self-advocacy can mean asking more questions, sharing your symptoms or things you’ve noticed, asking for clarification, bringing someone with you for support when possible, getting support from people you already trust, expressing what matters to you, and making sure you understand the options being discussed with you. Self-advocacy can be about participating in your care and making sure your perspective is part of the conversation.

You Don’t Have to Know What’s Wrong Before Bringing Up a Concern

One thing that can make self-advocacy in healthcare difficult to navigate is the feeling that you need to prove your concern is legitimate before you bring it up. What you might not know is that you don’t need to arrive with a diagnosis, you don’t need to understand medical jargon, and you don’t need to know exactly which tests might be appropriate. Your role is to explain what you have noticed, what has changed, and why it concerns you. Your healthcare provider can then use their clinical expertise to help determine what that information might mean and whether further assessment is needed. Here are some examples of how to phrase this, and you might find it helpful to write them down or practice rehearsing them before your appointment:

“I’ve noticed this has changed recently, and I’m wondering whether we should look into it.”
“I’m not sure what is causing this, but it feels different from what I normally experience.”
“Could you help me understand what might be contributing to this?”

Statements like these can help your healthcare provider use their expertise while making sure your experience is part of the conversation. A person-centered approach to healthcare recognizes that healthcare professionals bring clinical expertise, while patients bring important knowledge about their own experiences, preferences, values, and goals. Both can inform conversations and decisions about care.

Lean on the People Who Support You

Self-advocacy doesn’t mean you have to do everything or navigate all things healthcare alone. For instance, if you work with a psychologist, counsellor, social worker, dietitian, or other healthcare professional, they may be able to help you prepare for a healthcare conversation you expect may be difficult. You can talk through what you’re worried about, practice what you want to bring up, or ask them to help you identify questions you want to ask. You can also bring some of that support in the appointment itself. For example:

“My counsellor suggested I ask about whether there could be a connection between these things.”
“My dietitian wanted me to ask whether we should consider this possibility.”
“I talked this through with my psychologist, and they encouraged me to bring this concern to you.”

This isn’t about pitting the two services against each other; it’s simply another way of communicating that this is something you have been thinking about and that you would like to understand it better. Having someone help you organize your thoughts or practice what you want to say may also help you feel more confident bringing up something that feels difficult or uncomfortable.

Ask Questions Instead of Trying to Have the Right Answer

Did you know that you’re allowed to ask your healthcare provider how they arrived at a recommendation? Sometimes we don’t ask a question because we worry it will sound like we are challenging our healthcare provider, taking up too much time, or asking something we think we should already know. Asking for an explanation doesn’t necessarily mean challenging or disagreeing with your provider’s clinical judgement. Sometimes it just means you want to understand it.

Here are some examples you might take with you:

“Are there other possibilities we should consider?”
“What would make you want to investigate this further?”
“What are the benefits and risks of this option?”
“Is there anything we should monitor?”
“Could you help me understand why you don’t think this needs to be investigated right now?”

These questions can help you better understand the reasoning behind a recommendation and participate more actively in decisions about your care. Shared decision-making involves patients and healthcare professionals exchanging information and considering clinical evidence alongside the patient’s preferences, circumstances, values, and goals.

What if You Feel Like Your Healthcare Concern is Being Dismissed?

Sometimes, when concerns are brought up, it can feel like the conversation moves past the concern too quickly. That doesn’t necessarily mean your provider doesn’t care or isn’t listening. There may be clinical reasoning behind the recommendation that hasn’t been clear to you yet. One option is to bring the conversation back to your concern by saying something like:

“I understand that you don’t think this is likely to be a problem, but I’m still concerned about it. Could we talk a little more about why you don’t think it needs further investigation?”

“I’d like to make sure I understand your reasoning before we move on.”

This gives your healthcare provider the opportunity to explain their clinical reasoning. Sometimes, additional explanation may provide information you didn’t have or help you better understand why a particular test, referral, or treatment is or isn’t being recommended. And sometimes, you may still feel like your concern hasn’t been adequately addressed. Asking for more information gives you an opportunity to understand your provider’s perspective without requiring you to set aside your own.

Asking for Your Healthcare Concern to Be Documented

If you have raised an ongoing concern or discussed a plan for follow-up, you can ask whether that discussion and plan can be documented in your medical file. For example:

“I’d like to make sure my concern about this is documented in my chart.”

Or:

“Could you document that we discussed this concern and what the plan is from here?”

This isn’t about threatening your healthcare provider or trying to force them to order a test or referral. It’s more about creating a clear record of what was discussed at your appointment (including your concerns) and what the next steps will be. Having a record of the discussion and follow-up plan may also support continuity when care takes place across multiple appointments or involves more than one healthcare provider.

Bringing Someone With You for Support

You don’t have to attend every appointment alone. A partner, friend, relative, or any other trusted support person may be able to help you remember information, take notes for you, remind you of questions you wanted to ask , or just simply be there for quiet support.

It’s also sometimes helpful to prepare a list of questions before the appointment. This can be particularly helpful if you find it difficult to remember what you wanted to ask when you are feeling anxious or under pressure once you’re sitting in the room.

Preparing for an appointment doesn’t mean you’re expecting it to go badly. It can just help provide a little more structure when you’re dealing with something that matters to you and give you an opportunity to organize your thoughts before you’re in the conversation. For some people, being more prepared can also help relieve anxiety around a difficult appointment and make it feel more manageable.

Getting a Second Opinion Doesn’t Mean Something Went Wrong

There may be times when you still have questions after your appointment. Seeking a second opinion does not necessarily mean that you believe your first healthcare provider was wrong. Healthcare decisions can be complicated, and sometimes another clinical perspective can help you better understand your options. If you still have questions or feel uncertain about the recommendation, it may be appropriate to ask about the possibility of obtaining another opinion or referral. You can remain respectful of the care you have already received while still wanting more information or a different perspective.

Self-Advocacy Doesn’t Have to Mean Conflict

Advocating for yourself does not require you to assume that someone is going to dismiss you or respond negatively. You can walk into an appointment hoping for a collaborative conversation while still being prepared to ask questions, communicate concerns, and seek clarification when you need it.
Remember, you can say things like:

“My therapist encouraged me to ask about this.”
“Can you help me understand why we aren’t investigating that right now?”
“I’d like to make sure we document that we discussed this.”
“I’d like some time to think about my options.”
“I still have a concern I’d like to come back to.”

None of these statements require you to be confrontational. They simply make space for your perspective to be part of the conversation. Sometimes advocacy means speaking up because something has gone wrong or because you don’t feel your experience has been adequately addressed. Other times, nothing has gone wrong at all. It can simply mean feeling able to ask a question, express a concern, or say that you need more information during an otherwise collaborative healthcare interaction.

Patient-centered care prioritizes patients’ experiences, circumstances, preferences, and values alongside healthcare providers’ clinical knowledge and expertise. For that to happen, patients need opportunities to participate in conversations about their care and to ask questions without feeling that doing so means challenging their provider. Healthcare environments and providers can help create the conditions for those conversations, while self-advocacy can help patients communicate the questions, concerns, and perspectives they want to bring forward.

Self-Advocacy is Only Part of the Picture

At the same time, not every difficult healthcare experience can or should be addressed through individual self-advocacy. Stigma, discrimination, systemic barriers, and experiences of dismissal can occur in healthcare, and the responsibility for addressing these problems should not rest primarily with the people experiencing them. When problems are created or reinforced by systems, meaningful change also requires attention to the policies, practices, resources, education, and other conditions that contribute to inequitable or harmful healthcare experiences. Healthcare professionals themselves may also be working within systems that constrain their time, resources, options, or ability to provide care in the way they would prefer. Recognizing those constraints does not mean dismissing patients’ experiences. Both are important when considering where and how change is needed.

You don’t need to expect the worst in order to advocate for yourself. Sometimes advocacy means speaking up when something isn’t right. Sometimes it simply means asking the question you wanted to ask, sharing the concern you wanted to share, or making sure you understand your options. Individual self-advocacy can support participation in care, but when problems arise from systemic conditions, patients should not carry the responsibility for fixing them.

How to Advocate for Yourself in Healthcare Without Expecting the Worst