The Hide, And Seek Of Finding A Doctor

Finding a doctor that can properly treat, and fully understand Ehlers Danlos is literally like finding a needle in a hay stack.

It frustrating beyond words.  I have found that there are generally four types of doctors when it comes to Ehlers Danlos/EDS:

  1. Doctors that say that they know about EDS, and/or have treated someone about it.  Then you realize through being treated by this physician that their knowledge is very limited, and they would never admit this.  This can be a dangerous, and on occasion painful.  People with certain types of EDS do not metabolize medications normally.  Most are very slow to respond to pain medication, and many are more resistant to them.  Overall we do not metabolize medications as expected, and have sensitivity to many drugs.  Many doctors don’t seem to get this through their skulls, and don’t always take to heart when you say “Are you sure, I tend to be very sensitive to “x” types of medications”.  They assure you it will be fine, and next thing you know you wake up in the bathtub with no recollection of the past 15 hours.  EDS patients are extremely tolerant to local anesthetics, the “cane” drugs they use to numb you, and usually require up to double of the normal dose.  So there you are getting your tooth drilled, and ZING!  It really is a fun time.  I just wish they could understand that it’s OKAY to admit you have limited knowledge, or experience with EDS.  The vast majority of EDS patients have heard it, we kind of expect it.
  2. The doctors that openly admit that they do not know much about it, and/or have never treated anyone with EDS.  However, you soon realize they have zero interest it becoming educated about it.  Since it’s rare, you are the only person they know with it, there isn’t much need right?  What’s the worst that could happen?  Well, see above as that gives some indication of some of what can go wrong.  The kind nurse/or doctor might try to be helpful and help you move to the position they’ve not clearly explained they want you in, and now you have a dislocated shoulder….great…thanks…I was going for an all-time record of not dislocating that shoulder and you sir ruined it.  Not to mention, duh….I have EDS, I am coming to you as a doctor to probably help me with an aspect of it.  If you aren’t interested in learning about it so that you can properly treat me, how about to just tell me so that I can find another doctor instead of wasting my money and time until I realize it?
  3. A wonderful group of doctors that let you know that their knowledge is limited, but they are very open to learning about it.  I now carry a list of links for doctors to look through, as well as a book written by an EDS specialist for them.  I’ve had exactly one doctor fall into this category, and I love him for it.  A doctor that is willing to admit their limited knowledge, and are open to learning from a patient is a very special and wonderful thing.  These doctors also tend to have a good bedside manner, and talk to you like an educated adult.
  4. The very rare, literally probably 1 in a few thousand – the doctor that actually knows a good deal about EDS or at least understands it enough for the specialty they work in to treat you.  I’ve only met two of this group, one on pure accident and one through begging, questioning, and researching.

There is one other group I have not included, mainly because I have yet to find one.  I know they exist, there are a few up North, and in the Midwest that I am aware of.  Those are the doctors that can be considered specialist.  They are the ones that have written information, books, and/or contribute to the knowledge base of EDS.  They are mythic creatures to me at this point.

Over time, trying to find a doctor that can really treat you becomes something that induces rage.  Luckily there are a couple of great foundations that have great information.  People with EDS, no matter what type have to research; they have to become experts on EDS.  They also have to become advocates.  This is something I struggled with, but will explain in another post.  I’ve also come up with a list of questions that I now use to screen doctors that I will share in another post.  This post, well….it’s mainly about venting.

3 thoughts on “The Hide, And Seek Of Finding A Doctor

  1. Hi Bendy, great post. I’m recently diagnosed with EDS-HT(III) and yes, you have totally hit the nail on the head. My current primary care is in group 3, but unfortunately is so overwhelmed with “mystery” illness patients because of his skills that I doubt he’d have time to become a specialist in this. If you have those links though, I’d be happy to have them and share with him. As for group 4, I’m with you. I feel like they’re leprechauns or unicorns or something.

    Glad I found your blog!

    • What sort of links are you looking for? I’d be happy to help! If you ever have any questions, or would like to see a post on something let me know. I’ve become sort of a patient expert on HEDS (EDS III) over the past few years since I was diagnosed. Thanks for reading. I hope to get better about posting more frequently.

      • In group 3, you said you now carry a list of links for doctors to look through. I think my PCP would probably love that. I’ve only been Dx’d for about a year now, although god knows this has been going on and getting worse for a lot longer.

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