How Lupus Patients Cope With Doctor Frustrations

Finding the Right Doctor

My diagnosis was quickly confirmed and appropriate treatment was implemented. Furthermore (and most importantly), she made herself available to me at any time. If I flared up, I called and saw her that day.

She was aggressive, thorough and extremely efficient. She kept detailed records and provided me with copies of everything.

When she decided to retire me from my job, she completed all necessary paperwork and provided all requested documentation to those that needed it.

As a result, I was able to build a trusting relationship with a top-notch medical professional who I knew had my best interests in mind. I will always be grateful for what she has done for me.

I realize that doctors like this may be few and far between, but they do exist. Do your research, read and explore the many lupus resources available (including patient satisfaction entries online), stay informed, follow your instinct and become your biggest advocate.

Find one great doctor who you trust, respect, and can form a personal relationship with who can coordinate all of your care — including your referrals to other specialists. By doing this, your primary doctor will be able to keep all the others in the loop and relieve you of that challenging burden.

Keep the lines of communication open and ask as many questions you feel are necessary. A caring doctor will take the time to provide you with all the answers and time you need.

Trust your instinct and remember that you aren’t just a number, you aren’t a just case or a random patient, and you certainly aren’t a guinea pig when it comes to your care!


Did I still experience frustration from time to time? Of course, it’s inevitable — but it’s of a different nature. Mostly, I found myself needing to keep a day planner to keep track of all my scheduled and ongoing appointments with each doctor on my team.

At times it felt like a full-time job, but the benefits were well worth it! I knew that I was getting the care I needed and, more importantly, the care I deserved.

With determination, you can find this as well!

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Why You Should Demand Better Lupus Care

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by Barbara Leech on February 9, 2016
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