A Beginner's Guide to RA: How to Be a Self-Advocate

by Lene Andersen, MSW Patient Advocate

As you navigate life with a chronic illness like rheumatoid arthritis (RA) you often hear advice about becoming empowered and being a good advocate for yourself. Developing your self-advocacy is an essential part of navigating the complexities of the healthcare system. It can also contribute to creating a better life with a chronic health condition.

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Self-advocacy can reduce stress

Self-advocacy won't cure your RA, but it will help you to represent your own interests within the healthcare system, ensuring that decisions made are the best choices for you. This can make you feel more confident and more in control, which may lower your stress levels. As stress has been identified as a trigger for an increase in RA symptoms, this may even help reduce your pain! Self-advocacy has three components: being informed about RA, being assertive with your healthcare team, and being willing to challenge your doctors.

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Question: You have just been diagnosed with RA. What do you do now?

A. Rely on your doctor to tell you what you need to know.

B. Stick your head in the sand — denial ain't just a river in Egypt, baby!

C. Use the internet to find sites that have information about RA and communities of other people who have the condition. Check out books about RA at the library and the bookstore and make sure you know as much as possible about living with the disease.

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Answer: Learn everything you can for better treatment

The correct answer is C, of course. Information is power. The more you know about RA, the better you’re able to get ahead of it. The information can be overwhelming — RA is a systemic illness that affects all parts of your body, not just your joints. Sometimes it can feel scary. Take it in small bites, discuss with others, such as your family doctor or rheumatologist and peers in the RA community. Get some counselling to help you process. And then go back to your doctors to develop a plan to deal with what you’ve learned.

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Consider your own needs when finding a rheumatologist

Being informed and being in touch with your body will help you begin to shift the decision-making from your doctor to you. One of the first decisions you need to make is the choice of who should be your rheumatologist. You need to find a good doctor. The best way of doing that is to interview a few, choosing your partner in healthcare with the same care you would put into hiring a new employee or a contractor to renovate your house.

Upset patient at a rushed doctor appointment.
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Question: How do you find your voice with your doctor?

Your appointment with your rheumatologist is, as usual, frustrating. His face is buried in the computer, the appointment rushed. Soon, you'll be out the door with a new prescription and no answers for your questions. You:

A. Leave quietly. He’s busy and you don't want to annoy him.

B. Berate him loudly and stomp out, telling the other patients what a jerk he is.

C. Say: "I have questions about the new drug that I need answered to feel comfortable. I know you have other patients, but I am here now. We need to work together to fight my RA. I don't feel we do that if you don’t look at me."

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Answer: Be assertive with your healthcare team

The correct answer is C. Historically, our culture has had a bad habit of treating doctors as if they were gods and some doctors are still drinking that Kool-Aid, becoming irritated when you bring out your list of questions about things you found on the internet or in medical journals. Don't be deterred. Your doctor gets paid to provide your medical care and part of her job is to educate her patients about the condition and treatment options. If you don't know what's going on, how can you really grant "informed consent?"

Female patient at a medical check-up.
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How to build assertiveness skills

When you're sitting in a cold examining room wearing only a ridiculous hospital gown and your doctor is acting as if you're wasting his time, it can be difficult to assert yourself. Taking a assertiveness training course can be very helpful. As well, little things such as bringing a list of your questions can help you remember to get all the information you need. It can also be the start of a subtle shift — now you set the agenda and control the meeting, not the doctor.

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Question: Should you challenge your healthcare provider?

You've done some research that suggests you might benefit from a different treatment. When you tell your doctor, she waves her hands dismissively and tells you to stop listening to Dr. Google. You say:

A. Nothing.

B. "Bite me!"

C. "I respect your expertise, but I live with this condition every day. I have given my current treatment six months, but my RA is still active and I'm in a lot of pain. I think it's time to try something else. I need you to work with me and to give me more details about options so I can decide what is best for me."

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Answer: Yes. It’s your life and your disease

The correct answer is C. There is a term called compliance used in the healthcare system, which encourages people to be passive recipients of care. A compliant patient follows the treatment plan set by his doctor. A compliant patient does what she's told. Self-advocacy challenges that with something called mindful non-adherence, which is simply a thoughtful disagreement with your doctor.

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What is mindful non-adherence?

Mindful non-adherence requires being in touch with your body, being knowledgeable about your condition, and doing research to support your position. And it's not easy. Your doctor is a medical expert. Having the confidence to challenge someone in their area of expertise when you are sort of an amateur requires not just research, but guts. Although your rheumatologist is an expert in RA, remember that you are the expert in how RA affects your body and your life. That means you are the expert in this particular case of RA.

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To be a better self-advocate — practice

Even if you have the best doctor in the world, being a good advocate for yourself will improve your experience, both within the team you build with each of your healthcare providers, as well as that in the healthcare labyrinth. Knowing how to advocate for yourself will help you feel confident and safe in the treatments you receive. When you feel confident, your life with RA will be better.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, facebook.com/rahealthcentral. She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.