Two Things I Hate About Seeing My Rheumatologist

As a patient with lupus, I find it stressful enough to manage my situation. Going[[{"type":"media","view_mode":"media_crop","fid":"31776","attributes":{"alt":"","class":"media-image media-image-right","id":"media_crop_5137079526387","media_crop_h":"0","media_crop_image_style":"-1","media_crop_instance":"3348","media_crop_rotate":"0","media_crop_scale_h":"0","media_crop_scale_w":"0","media_crop_w":"0","media_crop_x":"0","media_crop_y":"0","style":"width: 118px; height: 109px; float: right; margin: 3px;","title":"","typeof":"foaf:Image"}}]] to see the doctor shouldn’t be its own source of aggravation. I know my doctors are there to help, but seeing them sometimes feels like running an obstacle course.

One of the biggest frustrations is trying to get an appointment within a reasonable timeframe. When you’re in pain or new symptoms pop up, the last thing you want to hear is that the doctor can't see you for another three weeks.

We understand that doctors are busy; some teach, some do research, and some spread their time over several locations. But between the long-term effects of medications and lupus’ own unpredictable nature, patients are left in a tight spot if they can’t get examined quickly. Sometimes the symptoms subside, but more than once I’ve ended up seeing my doctor in the Emergency Room. I’ve even had to put procedures on hold for weeks while trying to get an appointment.

The other thing I hate about my visits is this: After getting an appointment, traveling to the office and waiting to be seen (which can eat up a whole day in itself), the doctor breezes in and out, barely answering my questions.

Hands down, the number one topic that I and other lupus patients always feel under-informed about is blood test results and what they mean. I can understand that lupus blood tests aren't a firm marker of the disease, but it's still used to measure activity. Trying to understand what a high anti-DNA or a low complement means is confusing, and patients can have a hard time relating their test results to their symptoms.

Here are some ideas to help you help us feel happier about our relationship:

1.   Could you use technology to help you keep tabs on your patients between visits? I email one of my doctors, giving her updates and information without needing to schedule an appointment. In emergency situations this direct communication has allowed me to be seen on short notice or to have medication prescribed before symptoms worsened.

2.   If this doesn’t work in your situation, but if you do have additional staff who works with patients, could you introduce patients to a back-up contact - a physician assistant or head nurse who knows them and can see them when you can't? I know that some patients dislike seeing a different person at each visit, but introducing them to a team up front could soften the shock.

3.  Nothing really beats having your doctor take the time to answer your questions. But if there’s not time for that, having a brochure or list of resources handy is a simple way to give patients useful information.

Simple changes like these could make office visits more useful for patients, leaving them better informed, feeling more empowered, and actually looking forward to their next visit.