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."