Confirmational Bias

[lesleyg]

This is not really a question but wanted to put it up here for anyone who thinks they might have Behcet's Disease but aren't sure.

I was extolling the virtures of this website and the doctor I saw today said that to be careful as is possible to make the symptoms fit - especially if it is a rare disease. Just thought I would put this one in there for discussion.

[devonshiredumpling]

I'm too tired to answer this atm,Les - day after methotrexate

I have been thinking about this for a week or so though. I'll try to post my thoughts tomorrow.

xxx

[supernova]

Hi Lesley,

Over the years I have read so many self help books regarding chronic conditions. The main principles that I extracted (from this book club - party of one ) are:

1. Naming the disease - putting a name on any chronic experience helps more than anything with acceptance and healing. Importantly, doctors struggle just as patients do with the unknown and uncertainty.

2. Relapsing and remitting diseases are torture - anything that comes and then goes and then comes and then goes is one big mind game...torture.

3. Sh%& happens - no matter what...this is unavoidable. Stuff just happens. It is as much a part of the human condition as all the wonderful joyous parts of humanity.

With regards to principle #2...stuff happens and then stuff happens again and again and again...and we are tortured.

Likewise, you can do everything right, correct and true and still we cannot get far enough away from principle #3.

Which brings me back to #1...the pressure to name the disease is intense! In my case the diagnosis took quite a while, during which time I was treated symptomatically with each new episode.

To be honest...I do not really feel better with the naming of the disease. BUT, naming the disease allows me to be a part of this club and this helps me feel better.

This has been more of a monologue regarding the 'careful as possible' suggestion by the physician. I am really curious to know if anyone was diagnosed haphazardly and if it had an effect on the course of the disease or treatment??

[lesleyg]

Thanks

I agree wholeheartedly with everything above. We looked back on the dates and I've had this for 11 years and been diagnosed for 2. It was a bit haphazard in the sense the doctor who diagnosed me was visiting Australia. On the other hand the specialist who sent me to him knew he as good at diagnosing rare things.

Loved the part about book club party of one - I think we all might be in those and it's nice to join up and share info.

Lesley

[SuenMike]

Yesterday I visited a gyneacologist. Surprisingly, he knew all about BD because he runs a 'vulva' clinic. As the hospital I go to has part of the Univ of Cambridge Med School, there was a 'baby' doctor sitting in on the consult.

The consultant asked me to describe symptoms of BD that I have suffer from and suggested that BD would be a good subject the student might learn about. He also suggested that if a patient visiting him was suffering from oral ulcers, he should always ask if they had ulcers anywhere else, as it may be BD, and that it was so difficult to diagnose.

This all made me feel very happy because until doctors know about BD (I know we have all come across doctors/ health professionals who have never heard of it) there will be no hope of help to those others who might be suffering.

[lesleyg]

Hi Sue

Just reading this I was thinking how happy you must have felt - visting a doctor who had heard of it. What makes me so mad (now that I know) is that I was presenting with mouth and genital ulcers and being fobbed off by professors of dermatology!

Lesley