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Wednesday, 7 August 2013

When You Know You're Sick and the Doctor Says No

We are the experts on our own bodies so if you go to the doctor with serious concerns and are dismissed with an offhand "Take 12 aspirins a day and come back in three months" you would not feel understood.

There's been a lot of talk about Dr Google and how he is an unreliable help to patients, but Dr G is there for you at all hours of the day and night, not like Dr Revolving Door. 

In my experiences the interested, engaged and enlightened doctors on Twitter and on their own blogs are exceptional. Not all doctors post videos about issues they commonly see to make life easier for themselves and their patients, nor do they make themselves available through social media to connect with others.

There are still a lot of adequate (or less so) doctors out there with blind spots and poor awareness about certain health problems, particularly if the diseases are less common. If you sent them a herd of zebras and horses we would all have horse problems and no zebra would be diagnosed.


                            Not all 4 legged quadrupeds are horses    AMcKinnon

I agree that the best way to find trustworthy online resources would be to get some guidance from the medical profession but a doctor who diagnoses you as fit or barely ill is usually unlikely to feel you need guidance on where or how to follow up so that you can learn more. 

Likewise if you don't think that those nagging pains or odd feelings add up to enough of a problem to see the doctor then Google may be helpful in alerting you that you should discuss these changes with a professional. 

When I was dissatisfied with my non-diagnosis all I did was go to see another doctor who turned out to be as blind as the first. He gave me stronger drugs at increasing doses for treatment as I continued to get worse. Seeing him was not empowerment on my part, just a defensive move. When it got really bad I gave up on the two of them and went to a surgeon - finally a proactive move! And the surgeon diagnosed the problem and sent me to a rheumatologist.

I could have been more insistent in the first and second encounters and tried to get a more helpful answer but I was an inexperienced patient and no match for the polished dismissive skills of the doctor. In fact when you're sick your thought processes are less effective so that does not help you to make progress in getting a diagnosis.
The consequences of a missed/delayed diagnosis can be serious. That's where support groups and online resources are at their best.  People who have gone through a similar experience know a great deal that can help you. 

The old adage "If it's not broke don't fix it" which accounts for some well thought-out watchful non-treatment doesn't always help. One person's "not broke" is another person's "I can't live like this. I have a serious problem."  I don't want to end up with this on my tombstone.

                                      from keywesttravelguide.com

http://www.ncbi.nlm.nih.gov/pubmed/18155338

Reconsidering patient empowerment in chronic illness: a critique of models of self-efficacy and bodily control.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3056146/?report=classic Identity and psychological ownership in chronic illness and disease state

2 comments:

  1. Thanks for this post, Annette. It's a really timely one for me. Your reflections really have me thinking about recent experiences that have me all but ready to give up on help from doctors. Does giving up empower me? Not really, but continuing to see ineffective doctors when I am exhausted is not helpful either. It gives me much food for thought.

    Thank you,
    Jane

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  2. Hi Jane
    I was sorry to read about your last experience with a rheumatologist. We all invest a lot of hope and energy into a new doctor's appointment and it must be devastating when you feel you are going backwards. I liked this paper by Dr Pincus where he says that the patients estimation of disease activity is the best prognosticator, not the lab tests.
    http://www.jrheum.org/cgi/content/full/40/9/1469

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