We all know it’s important to see a healthcare provider for regular checkups, or if something seems out of the ordinary. Still, many people believe that birth control side effects are just “something you have to live with”, and common conditions like PCOS or endometriosis are often diagnosed very late—if at all. In one study that surveyed more than 4,000 people with endometriosis, three out of five respondents said they were not taken seriously while seeking a diagnosis (1).
Many people face barriers in getting the treatment they need. People have reported feeling discriminated against in health care settings for a multitude of reasons, such as their race, ethnicity, gender, sexual orientation, age, income, insurance status, language or accent, weight, and health or disability status (2,3).
Sometimes people need to work extra hard to have our concerns taken seriously. That’s why we’ve collected a few tips to help you make that happen—whether you’re a first-time patient or more experienced.
Here’s how to become an active advocate for your own healthcare.
Before your appointment
Find the right doctor
If you're able to choose your healthcare provider, try and get a personal recommendation from someone you trust. If you have a specific issue that you’re concerned about, you can look for someone who is specialized in that topic. For example, if you have bad period cramps, you could look for a provider with knowledge about endometriosis. If you’re having a health issue that’s hormone-related but your OB/GYN isn’t sure about the cause, an Endocrinologist might be able to help you find answers.
You can also find recommendations online and through support groups. For people who are transgender, we published a guide about how to find a trans-friendly OB/GYN.
Make a list of issues you want to cover at the appointment, and questions you’d like answered, including the main reason for your visit. If you’re seeing your doctor about a specific complaint, note when it started, what you’ve tried already, what makes it better or worse, and any associated symptoms that you’ve been experiencing. Endometriosis.org produced a printable checklist of symptoms information to bring to an appointment, if you suspect that you might have endometriosis. Using an app like Clue can help you to keep track of symptoms day to day.
Seeing a specialist? Before your appointment try to make sure they have access to your recent test results, or bring a copy with you. Bring a list of medications you are on or bring the medications with you—including supplements and over-the-counter medications.
Ask someone to come with you
It can help to have a friend, family member or significant other at the appointment with you. They can give you moral support and vouch for your symptoms. You might find you feel more confident and able to assert yourself when you have your support person there with you. Aside from bringing someone you know, you could also look into bringing an independent patient advocate.
A patient advocate is a trained professional (or volunteer) who can accompany you and help to ensure you get the quality healthcare that you deserve. Some advocates can also translate, or specialize in topics like trans health, or women’s health. They can assist you with preparations for your appointment, and help you understand what happened and what follow-up is needed. Most importantly they can stand up for you if your concerns aren’t being addressed by your healthcare provider, or if there’s reason to believe an error is being made.
If you bring someone with you, it’s helpful if you introduce that person to your healthcare provider, and state that you want them to join you for the visit. Keep in mind that the provider might ask to do part of the visit without the support person present, to make sure that person is not speaking FOR the patient, and that there's no issue of coercion or abuse.
At the appointment
Get there early
Arrive 15 minutes before your appointment to take care of any paperwork that’s required. If you arrive late you may have less time for your appointment, or get rescheduled. Arriving early helps you to feel more calm and less rushed, which can help if you have important concerns or fears to discuss.
Clearly articulate your goals for the visit, give the doctor the facts about your symptoms, and try to get some answers. Avoid downplaying the severity of your symptoms, and be sure to tell your healthcare provider how they’re affecting your life. Refer to the list of issues that you prepared.
Talk about the most important thing first to be sure you have time for it. Bear in mind that if you have multiple concerns to address, it may take more than one visit to get the answers.
If your symptoms include irregular cycles, heavy periods, or other menstruation-related issues, your healthcare provider might encourage you to take hormonal birth control, such as the pill, as a way to manage these symptoms. Sometimes birth control can be a great help, but it can also mask the symptoms and prevent or delay diagnosis of an underlying condition.
In one small study of 28 people with endometriosis, 26 of them reported that they had been prescribed birth control pills for temporary symptom relief, which contributed to delaying their diagnosis (4). You may need to convince your healthcare provider(s) to run additional tests in order to discover the source of your symptoms and get a diagnosis. You also may need to speak up if you have a diagnosis but want to explore alternative treatment options.
Ask your healthcare provider questions, especially when you don’t understand something they’ve said or done. If you have any idea about what is going on with your health, or what is triggering your symptoms, let your healthcare provider know, and ask them what they think.
If your doctor gives you a diagnosis, ask them, “Is there any chance it could be something else?” This question can help remind your doctor to consider alternate diagnoses. If you’re prescribed a new medication, ask about any expected side effects or things you need to avoid while taking it (like alcohol, sex, or certain other medications). Find out when you should contact your doctor if you experience side effects, and what to do if your symptoms are not improving. If you’ve been referred to a specialist, check how soon should you see them.
Listen to yourself
How are you feeling at the appointment? If in doubt, trust yourself. Remember it’s your body. If something doesn’t feel right, try to get a second opinion, or take some time to think things over. Do your best, and try not to be pressured into rushing into any treatment or procedure that you’re not sure about.
Communicate your concerns and wishes
Whether you have financial concerns about what is, or is not covered by insurance, or if there’s something you want your provider to consider—talk to them about it.
Taking notes at your appointment can help you to double-check that you’ve understood correctly. Is the doctor prescribing you any medications? How should you take them and how often? You can try repeating back the key points of what was discussed during the visit with your healthcare provider so that they can help fill any gaps in understanding before you leave. Recording your appointment is another option, but be sure to ask first. Depending where you live, recording your healthcare provider without their consent might be illegal.
Before you leave
Ask your provider for copies of any scans or test results. You may need to bring these with you to your next appointment, especially if you’re going to see a specialist or get a second opinion.
After the visit
Go over your notes
Make sure you are clear on any medications you need to take, and whether you need to schedule another appointment. If there’s something you don’t understand, phone the doctor’s office to follow up.
If you just got a diagnosis
Sometimes a diagnosis may be long-awaited, other times it can come as a shock. Take some time to let it sink it. Talk with someone you trust.
Don’t believe everything you read online
Researching online through medical journals and support groups may help you to decide which treatment you prefer, or help you find your way towards a diagnosis if you don’t have one—but not all websites provide trustworthy information. One 2010 study found that among web sites with a sexual health focus, between one quarter and one half contained inaccuracies about contraception, abortion, STIs, and HIV (5). Online forums can make you feel less alone, but they also tend to increase fear and spread a lot of misinformation. If your symptoms relate to menstrual or reproductive health, you might find what you’re looking for on helloclue.com.
Know that you did your best
Doctors are seen by many people as authority figures, and it can be hard to assert your needs to them. Celebrate the actions you’ve taken to assert yourself and your health needs, however small. Your health is worth fighting for.
Download Clue to track your cycle.