How Lupus Patients Cope With Doctor Frustrations

Minimizing Health Care Frustrations

Doctor FrustrationsHave you ever walked out of the doctor’s office feeling less than satisfied? Perhaps you have left feeling confused, frustrated, or maybe even angry.

As individuals dealing with the effects of lupus, we absolutely depend on the expert knowledge and advice of medical professionals. However, when medical care is a regular occurrence in your life, doctor frustrations are inevitable. I know that I have certainly had my fair share!

The old adage, “You can’t live with them, you can’t live without them,” seems to describe the relationship we share with our doctors, and having multiple issues that require numerous doctors only adds to the potential problem.

Over the years, I have learned a few things from my dealings with health care professionals. Perhaps most importantly, I now know that taking an active role (rather than remaining passive) in my treatment is essential to my wellbeing.

I’d like to share a few of the frustrations I have personally experienced as well as the steps I have taken to alleviate the frequency of feeling less than satisfied.

Personal Frustrations

Consider the following situations. I imagine that there are a few you can probably relate to!

When I was first sick, I saw a rheumatologist who just didn’t take my condition seriously. He NEVER saw me in a “flared” state because he was impossible to see with short notice.

At the time, I was working full-time as a teacher and the last appointment he would schedule for the day was 2:00 p.m. To see him, I had no choice but to take a half-day off work; yet, he refused to fill out any paperwork that granted job protection (namely FMLA intermittent leave).


In fact, he was so opposed to it that he had a sign hanging by the check-in counter stating that his office would not (under any circumstances) fill out paperwork for family medical leave or disability. Furthermore, he discounted any contributions made about my condition by other doctors.

At the same time, I was seeing a pulmonologist (who I highly respected) due to the significant breathing problems that accompanied my condition. He was great, filled out my paperwork, took scans and X-rays all the time — but missed many significant clues.

He and my rheumatologist never communicated and completely disagreed about what my condition actually was. I always felt so confused because this constant disagreement left me wondering who I could trust to provide the proper treatment and — more importantly — what condition actually plagued me.

My family doctor was another story entirely. Although she considered the findings of the other doctors, she was not an expert in the field of autoimmune diseases (which was the only thing they could all agree upon).

It seemed that any situation or symptom that presented itself just went into the bucket of “related complications” with no treatment plan in place because that wasn’t within her realm of expertise, and I would simply be referred back to the other doctors.

Next page: creating an effective team.

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