Being a Self-Advocate in a Healthcare Setting

A hand holding a megaphone.
Mar 16, 2023 | by Lisa Bendall

If you’ve been living with your disability for some time, you’ve probably learned how to stand up for yourself in all kinds of different settings. But advocating for yourself in health care can often be more challenging, because when you’re a patient, you’re not always in top form.

Even so, it’s a necessary skill that will serve you well. The older you get, the more doctor’s appointments, medical tests, ER visits and even hospitalizations you’ll likely be experiencing. And because the health care staff you encounter are often seeing you at your worst, they may make assumptions about your abilities, or your quality of life, that can interfere with your care.

You know your own body, your own disability and your own lifestyle much better than they do. And, unfortunately, it’s even possible in some situations that you’ll know more about the complications of spinal cord injury than the emergency room doctor or paramedic you’re dealing with.

For all these reasons, self-advocacy as a patient is critical. At the very least, it’s linked to greater satisfaction with your care, according to a study at West Texas A&M University. But it can also reduce serious risks, and eliminate barriers to treatments.

What do we mean by self-advocacy in health care? The West Texas A&M University study author defined it as being knowledgeable about your condition, being assertive, and not accepting a treatment that you don’t feel is right for you.

Here are some tips to keep in mind as you advocate for your own well-being:

  • Assertive doesn’t mean aggressive. You can be upset or frustrated, as long as you’re respectful. Avoid name-calling, insults and assigning blame.
  • Ask questions about anything you don’t understand or aren’t clear about. Remember to ask about the pros and cons of treatments or medications.
  • Keep notes. When you see a specialist or have a test, write down the date, the doctor’s name, test results, their diagnosis or advice, and which medications are given, and why. Include any notes about your symptoms and side effects.
  • You might be able to access and/or download your own medical records from your healthcare centre or testing lab. Keep these reports with your notes.
  • Keep track of all your medications, including herbal supplements and non-prescription drugs.
  • Be prepared. In hospital or at appointments, always bring your updated medications list with you, along with your notes and medical reports, contact information for your specialists, and your list of questions.
  • If there’s a problem, it’s helpful to know what you want. For instance, if you don’t have the hand dexterity to push the call bell beside your hospital bed, instead of simply complaining, ask the staff to locate a large-button option.
  • If you require your own trained PSWs or “essential support persons” in hospital or at appointments, put these needs in writing, or get a letter from your doctor. Since the pandemic, visiting rules may have changed, but your rights as a person with a disability have not. Reach out to the hospital ombudsperson if you have difficulty.

What about enlisting another person to be your advocate? Even if you’re independent in your day-to-day life, you may find that, in a health care setting, you can sometimes use advocacy help.

  • If you’re sick, sleepy or medicated, it’s harder to focus and stay on top of everything.
  • If you’re in bed, or feeling weak, you might not have an easy way to take notes or refer back to them.
  • Even at regular doctor’s appointments, you might find it helpful to have someone with you who can help you take notes, and look up previous notes quickly, if you can’t write or flip papers quickly.

If you have a partner, they may be an obvious choice as your advocate. But if you’re trying to decide on some other family member or friend for this role, remember that they don’t have to be a healthcare expert. They do need to be good communicators, get along well with the healthcare team, and be willing to take and keep notes. And they should be someone you trust to work in your best interest.