Getting Good Medical Care for RA
"Be proactive about your medical care."
We hear that a lot, those six little words. When you have a chronic illness like rheumatoid arthritis, it's essential to be proactive to make sure you get the best care that can help protect your body in the future. Right? But what exactly does it mean?
Being proactive is often contrasted with being reactive, in which a person waits for something to happen before they act. When you're proactive, it means preparing for what might happen - essentially, it means planning ahead. When you're healthy, there's no need to think about what kind of medical care you want and this can leave you flailing if you get diagnosed with a chronic illness. An additional factor complicating matters is the tendency towards putting the doctor in charge - after all, they're the expert, right?
Well, not really. Although a specialist like a rheumatologist may be an expert in rheumatoid arthritis, you are the expert in how RA affects your body and your life. This means that the medical care you receive must be tailored to your experience and needs. And since you're the expert on a topic, you are the natural leader of the project.
Research, Research Research
One of the first building blocks to making a good plan is research. You start with researching your new partner in life, finding out what RA is and what effects it may have on your life. This part of the process can be unnerving because RA can, at its worst, do some nasty things. However, as you read about this illness, you'll also find out that RA treatment today is very unlike treatment in the past and that it is now actually possible to go into remission, to protect your joints and lead a pretty normal life.
The next step is to research treatments. What's available, what is generally recommended in the field and what happens in the lives of others with RA who are happy with the state of their care they receive. The approach to treatment is now focused on aggressive, early intervention that can protect your joints from damage. Although people experience different levels of suppression of their RA, control of symptoms and the illness itself are key factors in being happy with your treatment, as is having a good doctor who listens and treats you as a partner.
Once you've done your research, you begin to have an idea of your goals are. They might include managing your RA, controlling your pain and having a solid medical team who will work together. As you begin to think about your specific circumstances, you'll probably add other factors.
Training Your Team
Many medical professionals will be involved in your care. A rheumatologist is essential to getting your RA treated so you can get back to your life. Your doctor may involve Nurse Practitioners or Physician's Assistants in the day-to-day management of your illness. NPs and PAs can help you get better care quicker by answering questions about side effects, prescribing a booster pack of steroids to help you get over a flare or getting you in to see the doctor quicker if something serious is going on. Other members of your medical team may include physical therapists to develop an exercise program that will protect your joints and occupational therapists to identify tools that can help you function better at work and at home. A psychologist may also be useful to help you adjust to your diagnosis.
Excellent medical teams do happen and sometimes without you having to do anything at all. However, more often excellence is a growth process guided by the team leader (you) in subtle or not-so-subtle ways. I call it "training," but don't tell them I said that! It starts with assessing whether your new rheumatologist is a good one. What makes a good rheumatologist will also make a good physical therapist, nurse or physician's assistant: someone who pays attention to you, gives you the time you need instead of rushing you through the appointment, explains your options so you can make an informed decision, etc. As in any relationship, it can take a while to get to know each other, but there are times where you need to be more assertive about your needs and next rotations. Practicing your self-advocacy skills before the appointment with a friend or family member can help you feel more confident about putting your foot down.
Thinning the Herd
So there you are. You have done your research, you have elegantly positioned yourself as leader of your medical team and still, you're frustrated. Maybe your doctor doesn't listen to you, maybe they dismiss the possibility of RA due to negative blood tests and you know that up to 30 percent of people with the illness are seronegative or perhaps they're rude. There can be a number of reasons, but the bottom line is that sometimes, you need to fire your doctor.
Remember that you (or your insurance company) are paying for a service, in this case medical care. Just as you would take your business elsewhere if your plumber dismissed the possibility of a leak despite standing ankle-deep in water, go somewhere else if you are not getting the quality service you deserve. Connect with other people with RA in your area or on the Internet to find a couple of names with good reputations. Then talk to your family doctor about getting a referral.
Being proactive about your medical care is an ongoing process - just as your RA is chronic, so is the fact that you are the project leader. Every time you see a new doctor or another type of healthcare professional, you'll need to go through the process of researching, establishing goals and developing a relationship with this new individual. The more you do it, the easier it gets and before you know it, you'll be an expert at being proactive.
Do you have experiences that taught you about being proactive about your care? Please share them in the comment box.
Lene is the author of the award-winning blog The Seated View.