Roseda Molina

From the time I was diagnosed with lupus, it was drilled into my head that consistently taking my medications was the most fundamental part of my treatment, But 

 why patients don't take their medications:[[{"type":"media","view_mode":"media_crop","fid":"33704","attributes":{"alt":"lupus","class":"media-image media-image-right","id":"media_crop_9990333483094","media_crop_h":"0","media_crop_image_style":"-1","media_crop_instance":"3568","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: 190px; height: 192px; float: right;","title":" ","typeof":"foaf:Image"}}]] We're 

sometimes there isn't anything our doctors can do

 to help. We patients have to  take responsibility for caring for ourselves. However, there are 

doesn't fit the official side-effect list

 for my medication. In the past, when this happens, I'm told that it'll go away or that it's stress-related. Often, no tests are given to check. So I 

stop the medication to see for myself if the symptoms go away.

. Even though I walked out of the office with a prescription in hand, it wasn't the direction I wanted to go in.

 or I wanted to avoid traditional medications that cause many other problems in the long term. Even though we're told that our doctors are our partners, we still see them as authorities and 

 them, so ultimately it's easier to just throw that prescription in the trash.

Most of the doctors I know have no knowledge of treatments outside the usual course of medication , so 

my options have felt limited to taking conventional medication, or going it alone with what I find on Google

How doctors can help patients stay on track:

 I'm much more likely to try out a new medication if I know it's for a limited time. Try suggesting a journal to keep track of any new or worsening symptoms during that period and let me make an appointment to see how things are going.

 I just want to feel better and have as normal a life as possible. Even if I have a hard time describing my symptoms or they don't fit any textbook definitions, if I feel like something is wrong, please take time to hear me out.

Work with me to make a complete care plan 

that includes complementary treatment options if I choose. 

that might give me medications that work better for me with fewer side effects.

 the ways to decrease symptoms and function better can help keep patients motivated and optimistic.

Articles

Even a well-informed patient may sometimes throw your prescription in the trash. Here a young woman with lupus describes what sometimes prompts her simply to ignore her doctor's best advice about treatment.

Why I Might Stop Taking My Medication

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.

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

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.

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.

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

 to help you keep tabs on your patients between visits? I 

without needing to schedule an appointment. In emergency situations this direct communication has 

 or to have medication prescribed before symptoms worsened.

  If this doesn’t work in your situation, but if you do have additional staff who works with patients, could you 

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.

.  Nothing really beats having your doctor take the time to answer your questions. But if there’s not time for that, having a 

 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.

This lupus patient likes her rheumatologist but sometimes hates seeing him. She gives two reasons for this, and offers suggestions to improve the relationship.

Author | Roseda Molina

Articles

Why I Might Stop Taking My Medication

Two Things I Hate About Seeing My Rheumatologist