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Posted by on Sep 27, 2016 in General, RA Blog Week | 8 comments

Active versus reactive patients

Active versus reactive patients

This is day 2 of RABlog week, and todays prompt is:

Active versus reactive patients – We usually start as naïve and trusting patients, then at some point we realize we must take an active part in our own medical decisions. Tell the story of your move to active patient or why you are not there as yet.


I became active when I took an interest in my health.  I have not always been very interested in my health. Frankly, I had other stuff on my mind.   Things like education, working, husband and raising two sons were far more important to me than my health.  I was focused on everything but my health.  In fact, my health seemed to be one of those things that held me back, so I was interested in most anything but my health.

That all changed one day in the early 90’s when I was in my office, and I thought; you know I have it all.  I have the job I always wanted, I am educated likely as far as I will ever go, Sheryl and I had been married for 23 years, and our sons are in High School and Middle School, yet I am still plugging away.    At that time diabetes had not destroyed my life as I expected.

I know this sounds strange, but it was a revelation that I might keep going a few more years.  I decided that day I needed to re-engage with the medical system.  While that decision was a good one, it turns out that one does not easily drop in and out of the medical system.

warning-sign-1553181Fear, the motivator to do nothing

I first had to face my fear.  So I started therapy to help me get to the point where I could turn over my medical treatment to a doctor.  Yes, I know this sounds odd, but I was pretty much a DIY person with diabetes up until that point.

I learned in the process of therapy to set boundaries and not give up full control of my health to a doctor or anyone else.  I refused to go back to doctors who would take over and do only what they wanted.  The therapist helped me learn how to find doctors who would accept me for what I brought to the table.

After a long search, my therapist helped me find a doctor who took me as I was and helped me get up to date in my knowledge.  I saw this doctor for two years until he left his practice.

New Doctor

In looking for a new doctor, I asked around and consulted patients of course.  But I also asked some doctors who I knew in another arena the same question: Who is the best young endocrinologist around?   I was often referred to this one doctor, so I made an appointment with Dr. Anthony Lee.  He said on my first appointment: we will need to do this together.  We are equals in this process.  He said he would respect my judgement, but I had to respect his as well.   It was like a light had come on.

I saw Dr. Lee for six years when I told him I was feeling bad, and I wondered if he had any advice.  He ran some blood work and referred me to a Rheumatologist who diagnosed me with RA.

My new Rheumatologist operated with the big man theory of medicine.  He was the all-powerful and knowledgeable doctor and patients went along for the ride.  It was a bit of culture shock.  I was used to being an equal partner in diabetes care, but I was less than equal in the care of my RA.

Then another fortunate happen chance occurred.  My first Rheumatologist closed his practice.  Of course, I was left scrambling, but his partner agreed to take me on.  Ten years hence, Dr. Steven Neucks and I are equal partners in the care of my RA.  He relies on me to say how treatments and pain are being controlled, and I rely on him to help me discern the correct medications to take.


I have changed biologics five times with Dr. Neucks each time in a collaborative manner.  We always talk about what is new in the market and if it might offer hope if I need to change.  Each change takes from ninety days to one year to accomplish.  We never make quick or rash decisions, but we always make a mutual decision.  For my part, I have to be knowledgeable and open and for his part he has to have my best interest in mind.  It is the only way this collaboration works.

Over the course of 26 years, I have evolved from a DIY person with diabetes to a collaborative patient.  A patient who can now ask his doctor about a new study or idea circulating in our communities and be respected for asking.  Collaboration takes a good deal of my time to be an equal partner.  But I am equal.  At the age of 59 I no longer want to be a DIY patient.  Today I see on average sixteen doctors each year for all the stuff that goes along with RA and diabetes.

I have had open heart surgery and a new hip.  For me, giving up control brought access to new technology and treatments which gave me more control over my health than any other time in my life.



signpost-take-care-of-childhood-around-the-school-1311194Take aways for September 27, 2016

  • You can participate in your health care
  • Being proactive is than reactive
  • Doctors and patients both have roles to play in making healthcare decisions
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  1. I do believe that the new doctors coming down the pike, are much more patient centered in their respective practices or specialties. I see a number of specialists as well. Most of my doctors are younger and I definitely can see that trend, partnership between physician and patient. It’s nice to be acknowledged and listened to, when you have a concern.

    • Brenda I am so sorry I missed your comment. I am so embarrassed.

      I also think doctors are getting better patient centered education these days. I am part of a group that does performance art “the betes orgnaizaiton” which is associated with a large medical school. One of purposes is to help people (including doctors) find the humanity in healthcare. We have had a great reception at the University of Pennsylvania school of medicine.

  2. I wonder how much individual personalities play a part in arriving at that collaborative process – on the part of the doctor and patient. There needs to be a good mesh – after all, a rheumatologist is someone with whom we end up having a very long term relationship…and all the rules of relationships should really apply. Doctors aren’t some form of gods on pedestals – they’re PEOPLE, just like the rest of us, who chose medicine as their path, where we chose other things. Not only that, medicine is, effectively, a SERVICE industry. We pay our money, and we get a service from the doctor – if that service isn’t what we need then it’s up to us to challenge that, and if there’s still no satisfaction, move on. We do it in so many other arenas – why not this most important one??

    • I feel the same Karen. We have to remember that medicine is a specialized service industry. The service is health and the product is our wellbeing. We always have to remember that doctors practice medicine. They never accomplish it. Since practice is a human endeavor we should expect that we will encounter different kinds of humans, some we click with, and some not so much.

  3. Ah, that doctor relationship – it makes such a difference! I wish I had that opportunity, but I’m really glad that you’ve landed on your feet with your two doctors and are getting on so well.

    • I think the doctor relationship is everything. We have so much invested in our health that surely we deserve a trusted partner.

      • Very true – but deserve and get are sadly two very different things!

        • Indeed these are definitely two very different things.

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