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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  • Mary Gutteridge

    A wise doctor once told me the real meaning of the word idiopathic was “I’m an idiot and can’t work it out!”.
    Sorry you are facing all this, don’t give up, become your own doctor and push for solutions.

    • Anonymous

      I’ve definitely had some brilliant doctors who have worked very hard to find answers, it just typically ends as soon as the word idiopathic hits my chart.  

      I’m definitely not giving up.  Scientific advances are made every minute and answers will come with time.  

  • http://twitter.com/PersonalFailure Personal Failure

    “Psychosomatic” has a similar meaning, only add “and I’ll be blaming it on you!” to the end.

    And don’t get me started on diseases like Multiple Sclerosis. Those are get out of diagnosing free cards, because they can cause literally any symptom, so any symptom after that is automatically the MS, no matter what it really is.

  • http://twitter.com/PersonalFailure Personal Failure

    “Psychosomatic” has a similar meaning, only add “and I’ll be blaming it on you!” to the end.

    And don’t get me started on diseases like Multiple Sclerosis. Those are get out of diagnosing free cards, because they can cause literally any symptom, so any symptom after that is automatically the MS, no matter what it really is.

    • Anonymous

      A lot of non-specific symptoms are hard to attribute to a specific disease, especially once you have a diagnosis such as MS that less is still known about and that can actually cause a wide range of symptoms.  I can understand how it would be hard to determine what to attribute specific symptoms to.  

  • Anonymous

    ” It leaves us hopeless and confused.  It leaves us stuck and powerless.”

    I would say it leaves us bitter and angry.  I have taken my care outside the box by consulting alternative care providers and doing lots of research myself.  Don’t waste your time with doctors who can’t make a profit off your illness.

    • Anonymous

      I agree and do do a tremendous amount of research myself as my PhD is actually in physiology and I work in pharmacology research.  Sometimes there just aren’t answers out there yet though.

  • http://pulse.yahoo.com/_TKLRYPKKWFYB5EUOMWGZ3NDHVI M R

    Look, I am a compassionate caregiver and I am WELL aware that there are some worthless doctors out there, BUT our health care system is not set up to go to the ends of the Earth to solve EVERY medical problem for EVERY person with a complaint.  Just like the rest of our society, patients need to take a little f’ing personal responsibility.  Some of you, unfortunately, must also accept the fact that you were dealt a sh!tty hand.  Some health issues will be idiopathic until the day you die, you are going to have to learn to cope with them the best you can.  Some health issues ARE psychosomatic.  The problem is YOU do not know that you are batsh!t crazy!  Most healthcare providers do not enjoy watching people suffer, but there are limits to what medical professionals can do and there are limits to the amount of investigation the health care industry will tolerate in your quest.  There is a belief in this country that everyone is entitled to exhaust all possibilities in the pursuit of a return to health.  Unfortunately that just is not so.  Unless you have wealth like Bill Gates, there comes a time when your condition will be labelled idiopathic (or psychosomatic).  Lamenting your bad luck and being bitter about how the healthcare system has failed you only prevents you from enjoying the life you have to live.  Find someone with a tougher row than you who is finding joy in their life and make them your role model.  Don’t survive, LIVE!

    • Anonymous

      Translation:  The healthcare system can spend hundreds of thousands of dollars extending grandma’s life for 3 months but your doctor doesn’t get paid to do research on possibilities to improve the quality of your life.  Helping people cope with illness isn’t profitable for you doctor

      It’s interesting that you feel a infant with gastroparesis has a psychosomatic illness.  It’s also interesting that you think those with psychosomatic illnesses are “crazy.”

    • Anonymous

      What a cruel thing to say to someone who only wants a little hope that someone can help with the pain they’ve had since infancy! “MR”, you do not sound compassionate at all. Someday, may you be in the position to be judged like this, and you’ll find out that it’s not that easy after suffering pain, with no end in sight, to pull oneself up by the bootstraps. 

  • Anonymous

    anonymous. your story would be a lot more compelling if you turned out to have a unifying diagnosis for your constellation of symptoms that all the doctors who labelled you as idiopathic failed to discover. absent that you are exactly what they labelled you as.

    • Anonymous

      Maybe one day there will be.

  • http://pulse.yahoo.com/_2LRZNHDZS6DU45WQ567LPQ7CMI ninguem

    “idios” = one’s own.

    Same root as, for example, idiom.

    “idiopathic” will mean unique to that person. From your description, the label is, unfortunately, exactly accurate.

    Whether they “give up” is another matter.

    “Primum non nocere”, first do no harm. I tell patients my translation of the term is

    “Whatever your medical problem may be, I guarantee medical science has the capacity to make it worse. The medical system……ANY medical system……can take your small problem and turn it into a big problem. So there is a judgement call (pointing to the patient), and ultimately YOU’RE the judge, whether your problem is big enough to justify going through more and more testing.”

    Which means they may back off on doing more and more tests to no end. But that’s a judgement call based on how bad one’s problems are, and I can’t say in a forum like this.

    • Anonymous

      I very much agree with your philosophy.  However, without going into undue detail on the forum, in this case the severity is up there and the continued testing has been warranted.  For other issues I didn’t bring up in the post, continued testing has not been worth it.         

  • Anonymous

    This may seem obtuse, but my daughter had similar symptoms (without the gastroparesis) and it turned out that she is allergic to the casein in dairy.  While this would be unrelated to gastroparesis, you may well have a separate issue at hand.  I suggest that you try a CF (Casein Free) diet for 2 weeks and then reintroduce into your diet.  Keep your “anti-anaphlaxis” remedy handy for this.

  • http://pulse.yahoo.com/_BBECNLX7SOSU5WBTONKN7QWQ4M Lisa Corcoran

    A good friend of mine was in the first Gulf War and came home with horrible GI issues. The Navy gave him a roux-en-y of his jejunum – they split him from breast bone to pelvis. It didn’t work. Multiple GI studies later, they gave him the idiopathic label and sent him on his way. He can’t hold a job because the first 3 to 4 hours of his day is spent on the toilet. Sometimes he’s so sick he ends up in the hospital on IV fluids because he gets so dehydrated. Thank you, ninguem, for finally saying what I’ve been thinking for years. I just wish someone could find the source of his pain!

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