How To Become Your Own Best Advocate In The Health Care System

In her 26 years as a critical-care nurse, Paige Lennox saw a lot of patients fall through the cracks—not getting the diagnoses, treatments or referrals they needed—often because they weren’t able to advocate for themselves, or didn’t have someone to do it for them.

Self-advocating involves speaking up about your feelings, asking for what you need and making sure your rights are respected, all of which can help health care providers treat you more efficiently and effectively. “Just by advocating for yourself, you’ll get better care, and your health will improve,” says Lennox, who is based in Nelson, B.C., and is the founder and CEO of Canadian Health Advocates Inc., which connects patients with medical professionals who are experts at navigating the Canadian health care system.

The pandemic pushed our long-stressed system to the brink, making self-advocacy more important than ever. That can be especially true for women and gender-diverse people, particularly those from racialized communities, says Tori Ford, founder and executive director of Medical Herstory, an international non-profit organization that advocates for gender health equity and runs workshops on how to self-advocate. Research shows that doctors are less likely to believe women and gender-diverse people when they say they’re in pain compared with men (a phenomenon known as the trust gap). On top of that, conditions that only or disproportionately affect women, such as endometriosis, are often underfunded and understudied, making them more difficult for doctors to diagnose and treat (this is called the research gap).

But as Lennox and Ford know, it’s not necessarily easy to advocate for yourself or someone else. When Lennox was advocating for her mom, who was in the final stages of cancer, she found it daunting despite her professional expertise, which inspired her to create Canadian Health Advocates in 2018. Ford, who suffers from chronic yeast infections, launched Medical Herstory in 2019 after several frustrating years of feeling judged, belittled and dismissed by doctors. “When you’re being told that your pain isn’t serious, or that what you’re feeling is normal, or that maybe you’re being dramatic or emotional, it’s easy to believe it and just go home and live with that pain,” says Ford, who is based in Montreal. “But when you can find your voice, that can make all the difference in your medical journey.”

Here’s how to self-advocate in the health care system.

Walk into your appointment with an agenda

Just as you’d show up to a job interview primed to discuss your resumé and career objectives, you should arrive at medical appointments armed with your health history and goals. Dr. Jennifer Zelmer, who holds a PhD in economics and is president and CEO of Healthcare Excellence Canada, a non-profit charity focused on improving Canadian health care, also suggests jotting down any questions in advance. And while health care providers often urge patients to avoid Dr. Google, consulting the websites of reputable organizations (like, say, the Heart and Stroke Foundation or the Mayo Clinic) can help you prepare for your appointment and, according to a 2021 survey, may even improve your chances of arriving at an accurate diagnosis.

Zelmer recommends keeping track of your health information in a journal or in the Notes app on your phone. (There are also several standalone apps that can help, like Flaredown and Symple.) What are your symptoms? When did they start? How long did they last? What may have brought them on? How severe are they? How are you managing them? What has worked and what hasn’t? If your vital signs or lifestyle factors (like how much you’re exercising, sleeping or drinking) are relevant, track those, too. Finally, make note of key health information, such as your current medications, allergies and personal and family medical histories.

Ford suggests setting a goal for your appointment, whether that’s getting a referral, asking about a new treatment or changing your medication. “This helps you focus on what you want to get out of the appointment and prevents you from leaving feeling overwhelmed, hopeless or frustrated,” she says.

Know your rights and exercise them

Did you know that you have the right to a second opinion? Or the right to refuse treatment? Every province and territory has laws around patient rights, which you can find on your government’s website. There’s a lot of overlap between jurisdictions, and laws typically include the rights to health care without discrimination, access to your medical records, information on proposed treatments and adequate pain and symptom management. If, for example, your doctor dismisses your pain, you can remind them that you have a right to relief—whether it’s a prescription, a note for time off from work or a referral to a specialist.

It’s important to exercise these rights to ensure your comfort, as well as your physical and mental safety. On one occasion, Ford declined a pelvic examination because she didn’t feel it was necessary and wasn’t in the right mental space. She stresses that it’s critical to remember that consent extends to the doctor’s office. “It’s your body, and you have the right to say no,” she says.

Bring someone with you

When you’re sick, scared, frustrated or overwhelmed, it isn’t easy to advocate for yourself, absorb medical information and keep an eye on what’s going on. Several studies have found that patients forget about half of what their MDs tell them and are more likely to blank if their doctors do most of the talking during the appointment and overload them with information.

That’s why it’s valuable to bring a support person to your appointments; someone who can prompt you about things you wanted to discuss, take notes and help you remember what your doctor said. This is particularly important if English isn’t your first language or if your condition affects your cognitive ability. (If your support person can’t physically be in the room with you, you can call or Zoom them into the appointment or speak to them immediately afterward to debrief.)

Zelmer points out that there’s a growing body of evidence showing that patients are safer and have better experiences and outcomes when they have someone supporting them in their health care journey. For instance, studies have found that they’re more likely to take their medication as prescribed and less likely to be readmitted, have falls or experience anxiety.

If you don’t have a friend or family member who can provide this support, consider reaching out to a professional or volunteer advocate. The health care experts at Canadian Health Advocates (who are mostly nurses) do research, explain medical information, participate in appointments, follow up on referrals and requisitions, help with advanced-care planning, assist with paperwork and act as a link between various health care providers. It’s an emerging industry in Canada, but Lennox says their services, which cost between $115 and $125 per hour, are already covered by two insurance companies, as well as a First Nations band.

Keep calm and ask questions

Medical appointments can bring on some big feelings but staying calm will help you self-advocate more effectively. “If you’re getting frustrated or tearful,” says Lennox, “it’s okay to say, ‘I’m not feeling heard’ or ‘I’m feeling really overwhelmed.’ If you need to leave the room for a minute, it’s okay to do that.”

This is also where your notes come in handy. If you become too upset to speak, hand them over to your doctor. Virtual care can also be helpful in challenging situations: You can set up in a comfortable space, and, as Ford points out, “if you get emotional or upset, there’s some distance between you and the physician.”

Doctors may make assumptions about what you know, use medical jargon or glaze over critical information, so ask questions if you’re unsure about something or want more details. “Don’t think that your questions are irrelevant or be afraid of sounding silly,” says Ford. “It’s up to us to make sure that we leave the appointment feeling like we have all the information we need.”

Research shows that about half of patients don’t take their medication as prescribed, often because they don’t know why they’re on it—so be sure you do, and that you understand why any specific tests or screenings are being conducted, too.

Speaking of physical examinations: Ford encourages patients to ask about any alternatives that may make you feel more comfortable, such as self-inserting a speculum for gynecological exams or self-swabbing for sexually transmitted infections. “I’ve found that physicians are more than willing to accommodate those requests,” she says.

At the end of the appointment, ask what’s happening next: when your next appointment will be, when you’ll get your test results or when your treatment will start. If you’ve had a procedure, Zelmer says you should be clear on the signs of complications and what you should do if they arise, whether it’s simply calling the clinician or racing back to the hospital.

Connect with others—and yourself

A large body of research shows that connecting with people who are going through similar health experiences can help you manage chronic conditions, cope with stress and even prevent some diseases. It can also give you insight into how to advocate for yourself. “Every time a patient advocates for themselves and then shares that knowledge, they make it easier for other people to do so,” says Ford, noting that Medical Herstory provides a platform for people to share their stories.

You can find formal support groups by searching online or asking your health care team; there are groups organized by many clinics and associations, such as the Canadian Cancer Society. There are also lots of informal groups on social media, but Zelmer says it’s essential to vet them, especially with the rise of medical misinformation. “There’s nothing like [speaking] somebody who’s walked a mile in your shoes, but it’s always wise to make sure that it’s a healthy conversation for you to be in,” she says.

And after practising self-advocacy, Ford encourages you to practise self-care. She suggests planning a reward for after an appointment, whether it’s watching your favourite TV show or going on a date with your best friend. “Advocating takes a lot of resilience and a lot of hard work,” she says. “I get ice cream after every appointment.”