In communities of people who have chronic illnesses like rheumatoid arthritis, you often hear advice about becoming a good advocate for yourself – how it is an essential part of navigating the health care system and contributes to living well with chronic health issues. Self advocacy won’t cure your RA or reduce your pain levels, but it will help you to represent your own interests within the health care system, ensuring that the decisions made are best for you. When you know what’s happening is the best option for you, you feel confident and more in control of your life and that can help keep your stress levels down. But how do you advocate for yourself?
Being Informed About Your Illness
You have just been diagnosed with RA. You
a. Rely on my doctor to tell me what I need to know.
b. Stick my 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 with RA. Check out books at the library and the bookstore and make sure I know as much as possible about living with the disease
The correct answer is C.
The thing about a chronic illness is that it’s going to be with you for the rest of your life. You will spend more time with your RA than you will with your spouse, children, pets and colleagues combined and the sooner you start to educate yourself about what it means to have rheumatoid arthritis, the better. This means you need to accept that you have this disease and finding that acceptance can be hard. They say knowledge is power and when your life partner is as unpredictable as RA, knowing what’s going on, paying attention to the messages your body is sending you, recognizing the patterns of what happens in a flare, when you need to rest and when you need to call your rheumatologist for help can make all the difference in learning to live well with this disease.
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 one and the best way of doing that is to interview a few, choosing your partner in health care with the same care you would put into hiring a new employee or a contractor to renovate your house.
Being Assertive with Your Health Care Team
Your appointment with your rheumatologist is, as usual, frustrating. Once again, he has his head buried in his computer, is rushing through the appointment and in another few minutes, you’ll be out the door, prescription for a biologic drug in your hand, your questions unanswered. You
a. Leave quietly. Your doctor is a busy man and you don’t want to annoy him.
b. Lose it completely, berate him loudly and stomp out of the office, telling the other patients what an ass the doctor is.
c. Say “I have some questions about the switch in treatment that I need answered to feel comfortable and safe. I know you have other patients to see, but I am here now and I need us to work together to fight my disease. I don’t feel we work together if you’re looking at your computer instead of me.”
The correct answer is C.
Historically, our culture has had a bad habit of treating doctors as if they were gods and some doctors sare 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 disease and treatment options. If you don’t know what’s going on, how can you really grant “informed consent?”
However, 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 course in assertiveness training can be very helpful, but little things like bringing in a list of your questions can not only help you remember to get all the information you need, but also begin to create a subtle shift - you become the person who sets the agenda and controls the meeting, not the doctor.
Willingness to Challenge Health care Provider
You’ve done some research on HealthCentral that suggests you might benefit from a different sort of treatment. When you tell your doctor, she waves her hands dismissively and tells you to stop listening to other people. You say
b. "Bite me!"
c. “I respect your expertise, but I live with this disease every day. I have given this treatment six months and my RA is still active and I’m in a lot of pain so I asked other people in my situation what has worked for them. I think it’s time to try something else. I need my rheumatologist to work with me and to give me more details about options so I can decide what is best for me.”
The correct answer is C.
There is a term called compliance used in the health care system to nicely manipulate you into becoming passive. 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. It requires being in touch with your body, being knowledgeable about your disease and doing research to support your position that a certain treatment plan won’t work for you or that you’d be better off trying something else
And it’s not easy. Your doctor is a medical expert and having the confidence to challengesomeone 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 and that means you are the expert in this particular case of RA.
Even if you have the best doctor in the world, being a good advocate for yourself will improve your experience in the health care labyrinth and will help you feel confident and safe in the treatments you receive. When you feel confident, your life with RA will be better.
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You can read more of Lene’s writing on The Seated View.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s 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. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.