Frustrated with Your Doctor Visits? Tips for Autoimmune Patients

Living with a chronic disease is hard enough without the frustration of working with doctors who communicate poorly, and navigating an internet nearly exploding with contradictory advice and information. How is one to know the best path to follow? Should you take the awful-sounding, but proven-effective medications your doctor is recommending, or try out the sweat lodge your friend keeps raving about?

The good news is that there is no single “right” answer, and you can change your mind as you go and as new information becomes available. Many people find the best outcomes when they combine the hard science of mainstream medicine (sometimes called “allopathic”) with the whole-body approach of complementary and alternative medicine (CAM). Unfortunately, patients often sense conflict between the various schools of thought and are left feeling like they have to choose one or the other.

The tides are gradually changing, though, so if you’re interested in combining therapies, do some searching locally to see if there is an Integrative Medicine program near you. These incorporate varied models of care to address the mind, body and spirit. At the very least, an understanding and acceptance of the talents and limitations of your different providers will go a long way in getting the most out of your care.

Help! My visits with my doctor are never long enough to get all of my questions answered. What can I do?

Unfortunately, this is a common experience for patients and one reason that many people get fed up with mainstream medicine. Here are some suggestions to optimize your visit:

  • Where variety exists, it’s okay to ‘interview’ providers to see whose style/personality works best for you – this is going to be a long-term relationship, so do some shopping. Providers who work in, or are affiliated with, a teaching hospital have the most stringent requirements for maintaining their own educational development.
  • There are pros and cons to going to ‘the best in the business’ – these doctors are often very difficult to get into and they, occasionally, have developed a huge ego around their expertise.  But they do also have invaluable knowledge, experience and clout.  Don’t be afraid of young/new doctors or ‘mid-level providers’ (NPs or PAs) – they have a fresh perspective, they often have more patience (and less patients!) and they’re often eager to please.
  • Get educated about your condition from a source that is considered ‘legitimate’ by the standards of mainstream medicine (going to your doctor with information from a chat-room will get you nowhere and cause frustration). Some great sites are:
  • Write down your questions in order of importance.  Usually there’s time for about 3-4 questions in a typical visit.
  • Ask your provider what resources are available locally such as support groups, nurse educators, research studies.
  • Don’t waste your precious visit time debating issues of alternative health and medicine with your mainstream provider.  For better or worse, mainstream doctors are not educated in alternative health, and are bound very tightly to the practice of ‘research based medicine.’  You wouldn’t ask your plumber to fix your electrical system, right? Alternative medicine is not your mainstream provider’s area of expertise.  Ideally, your doctor will respect your choice to pursue several avenues of healing, and you can be open about what alternative treatments you’re using.
  • Call the office before heading to your visit to see if the doctor is running on time.  This saves you the frustration of sitting and stewing in the waiting room for hours.

How do I know which alternative therapies will work for me and how do I get started?

Simply said, you don’t.  Do the best you can to narrow down what sounds appealing to you and learn as much as you can about it.  Word of mouth and personal recommendations go a long way in the world of alternative health.  Be suspicious of any claim of ‘complete resolution’ of disease.  Finally, just as we’d like our mainstream providers to respect our choice to pursue alternative, a good alternative healer should be able to recognize and respect the value of research based allopathic medicine.

Consider doing some reading on http://nccam.nih.gov/ - the National Center for Complementary and Alternative Medicine, which conducts and compiles research that’s been done thus far on alternative remedies.

Complementary-Alternative Medicine can become expensive because insurance rarely covers it.  Determine ahead of time what you are able and willing to afford and discuss this with your provider.  Also, some providers are willing to barter services so if you’ve got a talent to share, don’t hesitate to ask if you can set up an exchange.

Don’t expect immediate results, but do expect some results. Complementary-Alternative Medicine is often slower, gentler and more subtle than mainstream medicine, so be patient.  However, if you’ve spent months and thousands of dollars with no results, it’s time to move on.  Your provider should be able to give you a sense of how long it might take to see some results and what, specifically, those results might be.

In summary, now that you’ve got this new companion in your life – an autoimmune disease – you may find the world of healthcare to be overwhelming, confusing and frustrating.  Some combination of mainstream and alternative therapies seems to work well for many people, but each system has its advantages and limitations.  With a plan and some research, navigating the options becomes more manageable.  Above and beyond all of this, remember that nurturing yourself with adequate rest, healthy nutrition and exercise-as-tolerated is the first step on your path toward improved well-being.

 

About the Author
Kathi Kuntz, RN, MSN holds a Bachelor’s and a Master’s Degree in Nursing from the University of Pennsylvania. Her specialization is in the healthcare of women and her graduate research thesis was on autoimmune disease in pregnancy. She has over ten years of clinical practice experience. Currently, Kathi is on an adventure living and traveling with her husband and two young sons in Australia.

This post contains opinions of the author.  AutoimmuneMom.com is not a medical practice and does not provide medical advice, diagnosis, or treatment.  It is your responsibility to seek diagnosis, treatment, and advice from qualified providers based on your condition and particular circumstances.  Camino Real Ventures, Inc., the company that makes AutoimmuneMom.com available to you, does not endorse nor recommend any products, practices, treatment methods, tests, physicians, service providers, procedures, clinical trials, opinions or information available on this website.  Your use of the website is subject to our Terms of Use and Privacy Policy

 

Comments

  1. Great post and advice. I’ve also been frustrated by doctors, but find extremist views on either side to be irrational and unrealistic. I’m fortunate to be mostly in good health, but have had some pressing health issues arise recently that have made me rethink some previous positions I had. Thanks for this.

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