Friday, January 18, 2013

The Power of Pictures: Doctors Visits for Autoimmune Patients

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I recently had an appointment with my primary care physician (PCP) and it got me thinking about one of the strategies that I have developed over the last year to make my doctors visits and medical care in general more effective. It's pretty simple in the age of the smartphone: taking pictures.

While it might sound trivial or even silly, let me explain.  With autoimmune disease, like with many chronic illnesses, symptoms can fluctuate with little notice and new symptoms may unexpectedly emerge.  Often times these are symptoms which manifest themselves in ways that can easily be seen, but may only be visible for limited amounts of time. Rarely am I lucky enough to have an already scheduled appointment with my rheumatologist or PCP when one of these occurrences happens.

I was frustrated on several occasions when trying to describe a symptom to a doctor that they clearly did not understand. In some cases I just don't think they believed me; in others, it was a condition which would be hard to describe.

I now have a plan. When something new happens that has a visible manifestation--whether it be a swollen joint, a new rash, an eye that doesn't move correctly, or a puffy face--I take a picture. If the medical issue is pressing, I can then email my physician the picture (if they allow email communication) or I can simply have it available on my phone for my next appointment.

I've had doctors tell me seeing a picture isn't necessary but then I show it to them...and, sure enough, it always makes a difference. I guess it's human nature: "seeing is believing".

I have found this has made a major difference on several occasions in terms of how a doctor evaluated my symptoms.  It is hard for a doctor to deny a medical problem or attribute it to a patient's imagination, when a picture is right in front of them.

Pictures have been critical for my allergist to confirm that I again have a condition called angioedema.  While it was suspected, my face or lips were never in the process of  fully swelling while I was in the office.  Upon showing pictures of my face blown up like a balloon led my allergist to say  "it is definitively angioedema" and my PCP to say "oh my God" in shock about how bad it can become.

Photos have also helped my doctors treating me for blepharitis, rosacea, and some additional neurological complications of autoimmune disease to name just a few.  Of course I am not suggesting my smartphone photos replace an in person medical exam, but they give my doctors additional information and evidence to work with.  It has meant in on more than one occasion that my doctors have taken my symptoms more seriously and treated me more quickly.  I guess my smartphone has become my means of medical documentation.

Now at first, I wasn't sure how my doctors would react.  Afterall, some could see my documentation as somehow showing a lack of faith in their diagnostic skills.  However, I have even found that many of my doctors have come to appreciate my active participation in helping them to diagnose and treat me.

It my sound cliche, but in dealing with the complications of my health and trying to work with my doctors a picture can really be worth a thousand words (and more).

5 comments:

  1. I have found that to be the case twice. I had some pictures help a doctor diagnose my Blepharitis as well as my Rosacea.

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    1. Those are two great examples where pictures work. Same thing happened to me.

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  2. Exactly! When I was evaluated by rheumatologists at a teaching hospital, I pulled out my iPhone, and the rheumatology fellow grinned: "Smartphones have totally revolutionized my practice! Now, show us what happens with your skin."

    And I've had a very similar situation to yours where a doctor said, "Oh my god." I've been having episodes where only one half of my torso is covered with splotchy red. And my doctor seemed dubious. But then I showed him a photo where it was like a line drawn down the middle of my torso -- half reddish, half normal -- and his jaw dropped: "Oh my goodness, you weren't exaggerating, I have NEVER seen anything like that!"

    With transient symptoms that sometimes come with AI disease, I think taking pictures is KEY. Great post!

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    1. Yes, it is completely helped my care for a number of autoimmune related conditions! I am guessing as patients and doctors continue to become more technologically savvy smartphones will be further integrated into how patients and doctors interact. Those of use with autoimmune disease are ahead of the trend!

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