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What is self-advocacy? -

Self-advocacy is the practice of vouching for yourself, and particularly in the healthcare setting it means making sure your symptoms, concerns, and questions are heard. It’s about putting your needs first to find the right treatment and total clarity.

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Why is it important? -

Nearly everyone will be misdiagnosed at least once in their lives, because many conditions are difficult to distinguish. There have also been far too many cases of doctors overlooking women’s symptoms, for example, or perpetuating (either consciously or not) the long history of racism in medicine. Learning to self-advocate can help remediate misdiagnoses and can help those who have historically and statistically been marginalized in healthcare.

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Why is it important? -

But self-advocacy is also important regardless of your care provider, because doctors can only address what patients discuss and are screened for. For healthcare workers to do their job, they need your help to understand exactly what you're experiencing and provide you with care you feel confident in and comfortable about.

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Firstly: you are equally an expert -

The hardest thing about advocating for yourself at the doctor's is knowing that they’re trained professionals and feeling like that trumps your own experience. But the first step to self-advocacy is acknowledging that when it comes to your own body, in which you’ve lived your whole life, you’re also an expert.

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Be confident, or fake it -

You know more about your own symptoms, your experiences, your body, and your medical history than your doctor does. But if that doesn’t give you enough confidence, fake it. Expressing your symptoms and concerns with confidence will command your care provider’s attention, and make it difficult for them to brush you off.

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Find a care provider you trust -

Having a go-to doctor isn’t as common as it should be, but it’s essential to creating trust between you, which subsequently makes you feel more comfortable to voice your concerns.

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Arrive for appointments early -

Give yourself time to get centered and focused before your appointment, so you are in the best state possible to bring up questions and concerns. If you arrive late, you’re more likely to feel stressed and anxious, and your doctor will certainly not appreciate it either.

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Come prepared with a list of symptoms -

You must provide your doctor with as much information as possible to get a more accurate diagnosis. Come prepared with a list of the symptoms you’re experiencing, and don’t leave any out, no matter if you think it might be unrelated! Write it all down if you’re worried about forgetting.

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Be detailed -

Since you only have around 15 minutes on average with a doctor, you should have details ready for them about your problems: how and when the problem started, what makes it better or worse, any associated symptoms, what you’ve already tried to help alleviate symptoms, and comparisons of before and after.

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Give concerns along with your symptoms -

For example, there’s a difference between merely saying that you’re experiencing abdominal pain and saying that your abdominal pain is concerning you because your cousin had Crohn’s and you heard that it’s hereditary. Combining your symptoms with your concerns will help give healthcare professionals a better picture.

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Explain concerns when scheduling the appointment -

Your doctor's staff will typically schedule an appointment for a certain amount of time based on your symptoms or needs, so if you only schedule an annual wellness exam but you want to discuss other issues, you may not be able to. Be clear about what concerns you’d like to address so the person scheduling can book enough time for your doctor to answer all your questions.

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Bring all related documents -

It's important to bring your current medication list, information on your medical history, relevant test results, etc., so that the doctor can not only understand where your concerns are coming from, but so that they can see you are invested in your health and taking it seriously.

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Be honest -

If you’ve forgotten to take your medications, for example, the doctor needs to know so that they don’t up your dosage or switch you onto something else. You have to help them help you.

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Bring a list of questions -

It's normal to have questions about what you’re experiencing and potential treatment options, but it’s easier to read them than remember them on the spot. Bring a maximum of five questions, which you can even hand to your doctor so that you get them all answered.

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Don’t be afraid to disagree -

If you don’t agree with the treatment plan, letting your care provider know will allow them to either give you the information you need to make you understand better, or provide an alternate treatment route. They want you to be happy and comfortable, so give them the opportunity to clarify or understand you better.

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Share your goals -

Each patient is different and is willing to sacrifice certain things or take on certain side effects according to their specific goals. To help a doctor understand why you may be pushing back on certain things, explain that, for example, your most important concern is to get back into running as soon as possible.

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Take notes -

You have to be informed when you’re advocating for yourself, and taking notes is a great way to make sure you have all your information correct and accessible. This is especially useful when you’re dealing with multiple nurses, doctors, and specialists.

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Be persistent -

Sometimes it may happen that you bring up a question or concern and the doctor doesn’t address it while they tackle other topics. Bring it up again, and remain persistent in your concerns until you've not just spoken them but rather feel they are heard.

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Try to understand them first -

It’s easy to fall into defensive mode when you disagree with something a care provider is saying, but they’ll be much more likely to listen to your concerns if you first understand what they’re trying to tell you. The best-case scenario is that you're actually just having a problem of miscommunication.

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Address your discomfort directly -

If you feel you’re not being heard by your doctor, say outright: “I’m concerned you’re not hearing me.” Sometimes healthcare providers are on autopilot because they are overwhelmed with patients, and they need only a small statement to pause and listen.

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Don’t fear looking dumb -

Oftentimes people would rather nod along than reveal that they don’t know an important word or what's being discussed at all. Don’t be embarrassed! These terms are regular to a doctor, but you’re not a doctor, so it’s not at all unusual to ask them what something means.

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Get educated on your health insurance -

Taking the time to understand what your health insurance will cover and what you’ll have to pay out of pocket can be helpful so you can inform your doctor and find a treatment route that you feel comfortable with.

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Summarize in your own words at the end -

At the end of an appointment, take a moment to summarize what you've learned so that both you and your doctor know for sure that you’re on the same page. This simple summary can bring out any pesky lingering miscommunications.

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Confirm next steps -

It can be incredibly confusing when you’re told that certain results from certain tests lead to either one route of action or another, so repeating the plan ensures you haven’t missed any details and that you know exactly what you need to do next.

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Bring someone with you -

If you feel too nervous or like you’re not being taken seriously, it’s okay to bring someone with you. Sometimes a witness can also clarify a misinterpretation.

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Get a second opinion -

If you feel like you’re hitting a brick wall every time you’re trying to express your questions and concerns, get a second opinion from a different provider. A second opinion will give you the confidence of another professional who might understand your needs better. It may feel like cheating on your doctor, but it’s in your right to!

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Get a second opinion even if you like your doctor -

According to the Agency for Healthcare Research and Quality, around one in 20 people fall victim to outpatient diagnostic errors, so even if you’re comfortable with the diagnosis you’ve received, getting a second opinion on important issues is an important part of advocating for your health.

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As a last step, consider switching providers -

If you've expressed yourself confidently and clearly and you still feel like you aren't being heard and you have more questions than answers, it might be time to change your provider. Healthcare providers are human, after all.

Sources: (Banner Health) (Everlywell) (Northwest Primary Care) (My Patient Rights) (Real Simple)

See also: Never do these things before a medical appointment

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