Taking the Reins: When NOT Following Doctor’s Orders can Help Your RAby Lene Andersen, MSW Patient Advocate
Compliance — following doctor's orders — the very thought makes my teeth itch and not just because, in addition to rheumatoid arthritis (RA) and fibromyalgia, I have a chronic case of “you're-not-the-boss-of-me-itis.”
Compliance is a word that gets bandied about in the medical world. There, compliance is another word for adherence, that is, whether the patient (you) is correctly following the directions of the doctor. That’s exactly where the itching starts.
Physician: next to godliness
In the past, the doctor was as close to god as you could get while still being human. It was an age of submitting to authority and none were more in control than those who seemed to control life and death.
He — because there were few women in the profession — had specialized medical knowledge and as a patient, you did what you were told; you complied; you obeyed orders. In the present, it can be argued that for acute issues, such as a sprained ankle or strep throat, doing what your doctor tells you is a good idea. Applying ice packs and taking the antibiotics works in those cases. But when you have RA or another chronic illness, surrendering control of your medical care to someone else can work against you.
The idea of compliance is that someone else — the doctor — is the best judge of what will work for you. But are they? Can someone else tell you what a reasonable side effect should be? Can someone who is not you be an accurate judge of how much your disease interferes with your life? And what does it do to your sense of self, your ability to cope on a daily basis if someone else makes decisions for you?
Experts: you and your doctor
I'm not suggesting that you should refuse to listen to your doctor or stop taking your medication without consulting with them first. However, it's time to demystify the aura of the all-knowing medical professional.
Your doctor is an expert in their field, just as a teacher, plumber, or architect is also an expert in their field. Doctors are also human beings with all that this entails — foibles, quirks and biases. The reason a second opinion can be a good idea is because not all people, or all doctors, know the same information. Sometimes, this is the result of a bias — we've all heard stories of doctors who "don't believe in pain killers" — and sometimes, it's a result of experience or having read an obscure journal article.
You, on the other hand, are an expert in how RA affects your body and your life. Taking control of your life can be an essential part of coping well with RA, a disease that often feels unpredictable and uncontrollable, and part of this process is to take control of your medical care.
You are the best advocate for you. You know more about your situation than anyone else and are therefore the natural leader of your medical team. Your doctor is an invaluable member of that team, an expert who can give you valuable information, but you are the one who makes the decision. It's important to find a doctor who understands that dynamic.
Self-advocacy can mean noncompliance
Being a good advocate for yourself includes, in addition to knowing your disease and being assertive with the medical team, the idea of mindful non-adherence, the very opposite of compliance. Mindful non-adherence can improve your medical care and your life.
If you are on a medication for your RA and the side effects knocks you out to the point where you spend three days of every week on the couch, unable to live your life, it could be time to challenge this particular treatment. In this case, being a compliant patient would mean quietly taking a medication that limits your life as much as the disease would. Mindful non-adherence has you back in your doctor's office, saying it's time to try something else.
Although there are still doctors who buy into the god complex and prefer that you meekly acquiesce to their instructions, there is growing acceptance in the field that medical care is a collaborative effort between physician and patient, and understanding that a more holistic approach — treating your RA in the context of your life — will be more effective than doing it old school and just treating the disease. A good doctor will work with you to fight the disease, encouraging you to take the lead.
And sometimes, it is us patients who have to show our doctors how to become great doctors by subtly reaching over and taking the reins.