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Professional Patient: Skills Learned from Living with a Chronic Disease

Professional Patient: Skills Learned from Living with a Chronic Disease

By Katie M. Golden

Created: 08/09/2017
Last Updated: 12/10/2018

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Katie Golden is a #teamboutron Contributor and this post is part of boutron's Real Women, Real Stories series.

My business card says "Professional Patient." I get so many questions about this. What does that mean exactly? To me, I have acquired skills and knowledge that "healthy people" don't have. Having chronic migraine and pain has exposed me to situations that many others never have to face.

When your health turns suddenly, a lot comes at you quickly. Questions you never thought about before. What are my treatment options? What if I can't work? Which insurance plan is the best for me now? Where can I find support? How do I fill out this mound of paperwork, go to doctors' appointments, keep my job and run my household at the same time?


As a professional patient, I have learned the following lessons. By no means do I excel at all of these! Just thought I'd share observations I've had over the years:


  • You are your own best advocate.

  • Go into an appointment armed with information and questions.


  • If you feel like you know more than your doctor, it's time to find a new doctor. Never be afraid to get a second opinion.

  • Find support, whether through online communities, in-person support groups or therapy. You don't have to go through this alone.

  • Ask for help when you need it, it's a sign of strength, not weakness.

  • Don't ever let anyone tell you it's "all in your head."








I know how incredibly difficult each and every one of these points are to put into practice. I struggle every day. Sometimes I'm really good about following up on insurance questions, but I put exercise on the back-burner. I still feel bad about missing events, but I try not to let it consume me. I'm never done researching and learning about my disease and I'm open to evaluating new or even experimental treatments.

Having to face these complex issues makes us all professional patients. It's daunting, it's overwhelming you're sick. Give yourself some credit for managing each day the best you can. Why are you a professional patient?

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