We often talk of the importance of people with rheumatoid arthritis (RA) having a medical team composed of many different health professionals. These teams are built over time, growing one by one as you need what a particular profession offers. But how do you know who you need so you can ask for a referral?
Identifying the problem
In order to determine what kind of services you need, you first have to identify the problem. Most of us see our rheumatologists every 3-6 months and usually for about 15 minutes. That’s not sufficient time to go into the depth that might be required to assess what’s going on. Doing some prep work ahead of time makes it more likely that, when you do talk to your doctor, the two of you will work together more effectively to find the appropriate solution to your problem.
It’s important to have an honest dialogue with your doctors and many physicians are completely supportive of this. In his work as Medical Director of the Global Healthy Living Foundation, parent organization of CreakyJoints, Dr. Jonathan Krant endeavors to, among other things, “empower patients to understand their illness, as well as be articulate with their physicians about what’s wrong and what’s not working.”
Identifying the problem isn’t as easy as it sounds. RA is very good at disguising the real issue. As well, most people aren’t aware of the full expanse of services that are available to help them live better with this disease. There are three techniques that can help you narrow down what you’re looking for.
Track your symptoms
If you haven’t used a symptom tracker or a symptom diary before, now’s a good time to start. Tracking your symptoms help you identify patterns. If you have a smart phone, a symptom tracker app can make that process much easier, gathering information into a report to share it with your doctor.
One such app is Arthritis Power, which also lets you donate your data anonymously to help arthritis research. The benefits of symptom trackers are clear when the time comes for your appointment. “This is the patient capturing what we don’t have time to really query,” Dr. Krant said. “Arthritis Power really is the first patient reported database which is entirely dependent on patient assessment.”
By tracking your symptoms, you become more aware of them and that in itself can help your brain start to make connections that can bring you closer to identifying what’s going on. And that’s the second technique that can be useful in this process.
Think about the cause, not symptom
When you have RA, you can have a lot of symptoms. It’s a bit like being covered in a distracting noise that makes it impossible to find out what’s really going on. Spending some time to think around that noise can help you dig deeper to find the cause.
For instance, 15 years ago, I had a lot of trouble coping with my pain levels and saw a counselor to help me. After several months, it still wasn’t working. And then it occurred to me that this might not be because I didn’t know what to do to cope, but that my pain levels were too high for coping skills to make a dent. That’s when I realized my RA treatment wasn’t working and I needed to see my rheumatologist, rather than a counselor. Had I had a symptom tracker, as well as access to the next technique, I would’ve gotten there sooner.
Ask the community
Connecting with others who have RA can be a real gift. RA symptoms can feel very strange and sometimes, you wonder if you’re exaggerating or making it up. This is a normal response to the strangeness that’s happening in your body. Talking to others who know how you are feeling can be extremely liberating, helping you to realize that no, you’re not making it up and yes, it really can be awful. The support that the people in the community give each other can see you through the rough days.
Talking to others with RA can also be a wonderful source of information. They’ve gone through what you are experiencing and may have suggestions about what kind of services might benefit you because they’ve received those services themselves. You can ask questions of the community here on the RA site’s Q&A section, as well as connect with others on social media.
Using the three techniques described here can help you be more articulate and precise when you see your doctor, which will help them refer you to the right kind of service. Remember that although you can find a lot of information online and through other people, there is no substitute for speaking to your physician. As Dr. Krant mentioned in our interview, “the reason they’re seeing me is to dispel any concerns of misdiagnosis.”
What kinds of health professionals are on your team?
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Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
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.