April 25, 2008

Patient and Guinea Pig: The Same Thing?

 I borrowed the title for this post from Mike C. at Epilepsy and Life. Double-click the title to read his post there. He chronicles an experience in which he is asked to participate in a study. 

Mike relates his anxiety with docs and hospitals in this post and he raises questions that seem only relevant to crips like us---all of us!

When was the last time any of you felt secure with your doc??? I know I haven't felt secure with a doc for a very long time. This is probably because once they discover my E., they seem to want to prove I don't have it, prove it is somehow psychogenic and not 'true E.' or disregard my condition altogether, because they feel E. is a common disorder but not a dangerous one!

Then, there are those who feel we are great subjects for research studies. So, they begin to see us, not as human beings any longer, but as study animals. I don't know what is worse, the notion that I am being disregarded, discredited or dehumanized!
"Do No Harm" seems only relevant to docs when they are dealing with otherwise able-bodied patients. When it comes to their crip patients, they seem anxious to shuffle us off, into studies or into some other care protocol.

How often are persons with epilepsy shuffled off into psychiatric care or into psychological counseling? How often are our seizures attributed to these kinds of conditions, even though there is plenty of information in journals concluding that E. often presents in ways that are imitative of psychiatric pathologies??? 

Does this mean docs are bigoted, or does it simply mean that many, many docs are undereducated when it comes to coping with epilepsy?  My own take on this is that docs are frequently undereducated and that they reach an end to their abilities early in the doctor-patient relationship. When this happens, they search for a good excuse to let go of us as patients, but without feeling they have abandoned us. 

I would love to see a study of doctors done, asking their feelings on E. and whether or not they feel confident treating patients with it. I would also love it if these docs could be asked if they are aware of current treatment, proper first aid techniques for convulsions, etc. 

I think the outcome of such a survey might be fascinating.

1 comment:

Diane J Standiford said...

I want to see that same survey for MS, Fibromyalgia, etc etc...sad.