Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Thursday, January 7, 2016

Rant: Invalidation vs Validation by a doctor

This is a rant about the dichotomy between being validated and being invalidated and how it affects the patient.  I have two completely opposite experiences in which I was a participant although not the person to whom the experiences happened.  It's an interesting place to be, on the outside looking in yet totally invested in each person's outcome.  I feel good, my brain is working.  I am lucky.  It makes the vicarious experience of these situations much more painful and joyful than when I was the one experiencing it myself.  When I was invalidated, it hurt but I was so tired that I didn't care.  When I was validated, I cared but was too tired to feel much beyond sweet relief.

I will start with invalidation.   I am advocating for someone, have access his to medical records and attending doctor's appointments with him.  The simple fact that he has asked for help and will finally see a medical professional was a huge hurdle that we overcame.  
"Yes", I told him, "the slow decline in your quality of life paired with abnormal test results IS A VALID CONCERN.  The unilaterally swollen neck, hip pain so bad that you can't get in and out of the car and other physical symptoms cannot be faked, they are not in your head."
Finally, I found someone in the medical field that I was comfortable with and he was willing to see her.  Victory #1!  She was awesome.  She listened, she heard, she asked questions of him and then asked my opinion.  She ordered a lot of lab work, she asked me if I wanted more things tested.  He ended up having a very comprehensive blood draw that turned up a couple of rheumatological abnormalities.  Sigh of relief.  Yes, something really was clinically wrong.  Both of us felt very satisfied with the visit to the medical professional.  We felt relieved.  We were going to get answers!

We went to the specialist who promptly fixated on the patient's light sleep, hip pain and possibility of depression (Damn, who is sick, hiding it for years and doesn't feel down?!).  He then very unnecessarily gave us the name of a psychiatrist.  INVALIDATION #1 (IT'S ALL IN YOUR HEAD). He ordered more blood tests.  He even mentioned Lyme.  At that point, I whipped out the Igenex.com lab form.  Igenex performs very thorough Lyme testing.  All he had to do was sign it.  He didn't have to interpret it or have any liability.  He refused, instead he chose to run a Lyme test that was for an acute infection (has occurred in the last 4-6 weeks) and one that has a high percentage of false negatives.  INVALIDATION #2 (YOU DON'T KNOW ANYTHING AND I REFUSE TO BELIEVE THAT YOU MIGHT ABOUT ONE THING)

The blood tests turned up yet more abnormal rheumatological results.  Granted, the results were not an emergency but the sub-receptionist told the patient to keep his appointment for a month and a half from the date he called, February 15th!  INVALIDATION #3 (YOU DON'T FEEL AS BAD AS YOU SAY YOU DO, YOU CAN WAIT AND WORRY ABOUT THE SIGNIFICANCE OF THE RESULTS AND FEEL SUPER DUPER CRAPPY FOR THE NEXT SEVEN WEEKS).  We finally spoke to the main receptionist who was kind and caring.  She was validating and thoughtful.  She was helpful throughout.  Basically, she kindly said the doctor didn't think the patient's numbers warranted concern despite the severity of his symptoms.  It didn't appear that the doctor was at all concerned about the painful to confess symptoms, abnormal blood results and increasingly debilitating fatigue.  No referrals (except a psychiatrist, I don't know how a psychiatrist could help with abnormal blood results!?), no suggestions, no nothing except the very vague and disturbing "monitor for future"  What the fuck does that mean?  Nothing if you're not the doctor.  INVALIDATION #4 (YOU ARE SO UNIMPORTANT THAT I WANT YOU TO KNOW YOUR RESULTS WERE ABNORMAL AND THEY MIGHT INDICATE SOMETHING BUT MAYBE, JUST MAYBE, I'LL TELL YOU IN THE FUTURE BUT YOU HAVE TO GUESS WHAT I MEAN BY "MONITOR FOR FUTURE" AND DO WHAT NEEDS TO BE DONE BUT I'M NOT GIVING YOU ANY CLUES!  HA!  HAVE FUN SUCKA!"  

OVERALL EXPERIENCE FROM BEING INVALIDATED OVER AND OVER:  COMPLETELY DEMORALIZING.   So demoralizing, in fact, that the patient feels like avoiding doctors and the medical community all together.  He'd rather live with the increasingly debilitating physical and mental symptoms by further modifying his lifestyle to accommodate the limitations that have become larger and larger over the years than go to yet another doctor who will basically tell him he's crazy (I'd say the patient is magical since he can fabricate test results that are backed by symptoms!).  Even as an outsider to this process, I was invalidated and demoralized.  I have cried more than a few tears over the unnecessary way the patient was treated.  It is even more frustrating for the patient who now doesn't always believe his symptoms are real

VALIDATION STORY
Another friend of mine has been struggling for a few years with odd and seemingly unrelated symptoms.  He came to me because many of his symptoms and some test results pointed to adrenal insufficiency.  Yes, he ended up getting diagnosed with adrenal insufficiency but after months of well managed adrenal insufficiency, he didn't get significantly better.  He finally had some testing done that could indicate a specific disease that generally needs to be diagnosed on clinical symptoms.  This is an over simplification but you get the picture.

He found a specialist in the area of his suspected issue.  This doctor did a "group" appointment.  I think the patient was slightly wary.  The group appointment turned out to be enlightening, informative and very positive.  VALIDATION #1-3 (1)  YES, THERE MIGHT BE SOMETHING WRONG WITH YOU 2)  I WANT YOU TO UNDERSTAND AND BE A PARTICIPANT IN THE PROCESS SO I WILL EXPLAIN THE REASONS WHY THERE MIGHT BE SOMETHING WRONG WITH YOU 3)  HERE ARE SOME HANDOUTS TO TAKE WITH YOU SO YOU CAN READ THEM ON YOUR OWN TIME AND REVIEW THE INFO WE HAVE COVERED IN CASE YOU CAN'T ABSORB IT ALL RIGHT NOW.)  It was followed by a brief one-on-one where the doctor reviewed the symptoms and lab results.  He explained the results and how the correlated with the symptoms and his philosophy of treatment.  VALIDATION #4  (YOU ARE IMPORTANT AND I WANT YOU TO UNDERSTAND WHAT IS GOING ON AND WHY IT IS GOING ON).   The doctor followed up the diagnosis with a written treatment plan VALIDATION #5 (I WANT YOU TO KNOW WHAT IS EXPECTED OF YOU FOR THE NEXT SIX MONTHS.  I WANT YOU TO KNOW YOU WILL FEEL LIKE SHIT BEFORE GETTING BETTER.)

OVERALL EXPERIENCE FROM BEING VALIDATED:  RELIEF, HOPE, BELIEVED, WEIGHT LIFTED.  PRICELESS!!


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