A note to doctors from a patient labelled as idiopathic

I am an enigma.  I always have been.  Some doctors think of me as a challenge while others make it clear they dislike dealing with my case.  I’ve had gastroparesis since I was born.  Idiopathic gastroparesis.  I’ve had debilitating migraines since I was 3.  Idiopathic migraines.  I’ve had several-month bouts of low grade fevers for years.  Idiopathic fevers.  Over the past 6 months I’ve started going into anaphylaxis.  Idiopathic anaphylaxis.

Every time I hear the word idiopathic my heart sinks, my eyes fill with tears, and I’m instantly exhausted.  Idiopathic means your doctor gives up.  They give up on a cause.  They give up on a treatment.  They give up on you.  And you’re stuck with it.  They’ve run test after test and have come up empty handed.  They’ve (hopefully) wracked their brain, consulted with colleagues, and dug into literature as far as they could, but yet have no answers.  The problem though, is not that they have no answers; the problem is that they stop trying to find them as soon as they say the word idiopathic.  They give up.  Once you’ve been labeled as idiopathic the search for answers comes to an abrupt halt.  Their job is done.

When a doctor gives up they just move on to the next patient but where does it leave the patients they give up on?  It leaves us hopeless and confused.  It leaves us stuck and powerless.

Idiopathic should not mean the end of the search for answers; rather it should call for a renewed effort to think outside the box for other possibilities and to ‘keep their ears open’ to new developments that could bring future answers.  Instead of being a disease of unknown cause, it should be a disease of yet to be determined cause.  This may seem like a matter of semantics but to a patient it makes a world of difference.  It means there’s hope.  Giving a patient hope is the best doctoring you may be able to do at that point.  The cause may not be evident right now but that doesn’t mean a new test or novel information won’t come out tomorrow that could hold the answer and with it, a resolution.

Idiopathic doesn’t mean the job is done; it means it’s just begun.

Don’t give up on us.

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