Caro/ rejection

[Guest guest]

HI Caro:

Been there too, unfortunately. I have been unable to get a new internist after

mine left for Alberta because there aren't enough to go around and when my

cardiologist tried to find one for me, that was the response - too complicated,

didn't know anything about EDS, too overloaded to learn. Well, if they take on a

patient who after the fact is diagnosed with a rare disorder, I doubt the doc

dumps him or her. THe denial of an internist wasn't personal - It was at least

polite but unfortunately that doesn't solve the problem.

My big conceptual problem is that firstly if it was employment or access to

services you could plead discrimination because that is basically what this is -

refusing to provide a service on the basis of a certain factor. IN the case of

EDS, a factor beyond the person's control. Secondly when one considers that

those who either do dumb things (like imitating the stuff on that Jackass show

and getting hurt) or engage in acitivities that ultimately ruin one's health

when there is at least a choice to engage or not engage in it - they aren't

turned away. We did not choose to have EDS, we did nothing to " bring it on " .

More than once the words have come out of my mouth " perhaps you have me confused

with someone who actually had a choice in life - I didn't ask for this disorder

and I don't want it. REmember that " . More than once I have seen the doc

literally receive a jolt of reality and then change his mind but you have to get

through the door first. This works well on ER docs...

We weren't given a choice in getting stuck with EDS and I don't think docs

should be able to turn someone away because they are " complicated " . I am certain

an EDSer would not be the only complicated patient these docs have and that is

where it starts to appear discriminatory. If you have a patient who is

belligerent, non compliant and uncooperative - refuse them because they can

choose to act this way or not. I have never met anyone with EDS that I would put

in that category. In fact I find those with rare disorders tend to be well

informed and want to work together with their docs.

I remember when we started getting AIDS patients in the health care system. Some

docs didn't want to look after them because of complicated treatment regimens

and very few patients with the condition. Difference was they were coming in as

hospital admissions rather than into someone's private practice. In private

practice someone is more free to see who they want apparently.

In an ideal world, patients would have more power than they do. A person should

be able to go to a medical association and say " I cannot find a doctor to treat

me in ------- speciality for this reason " and the society in turn MAKES one of

the specialists take the patient. No one should go without care they need

because they have the " wrong medical problem " as I often refer to it.

I hope you can find someone else. Too me this " too complicated " is just a cop

out. WHen you have worked in ICUs as I have and you have a patient so complex he

needs two nurses constantly to keep up with meds and stuff - that is

complicated. EDS isn't in the same ballpark as some of those patients I looked

after. IF a person can grasp - connective tissue defect - can affect any body

tissue by causing floppiness, stretchiness, dysfunction, weakness, tissue

integrity problems and instability - that is EDS in a nutshell! One sentence!

The doc need only use his imaginiation to IMAGINE what the effects could be

based on that one sentence.

I was told my only recourse here was to complain to the medical society but

apparently little would be gained because unless it is an emergency situation

apparently they can decline to see patients they aren't comfortable with. Then

you worry about whether you will be " blacklisted " because you complained. Docs

do tend to talk amongst themselves

It would depend on how discrimination is defined where you are and what rights

physicians have in choosing patients.

I hjad two GPs refuse to take me because they felt only cancer patients needed

narcotics. I also felt this to be discriminatory based on lack of knowledge,

misconceptions/ stereotypes of who would benefit from that type of drug and not

treating me as an intelligent individual who has seen all the right speicalists

and has lots of documentation. I tend to think we are ultimately better off

without people like this in our lives but we also have a right to medical care.

At least here in Canada this is a grey area, where there can be a choosing of

patients one will treat. You have rights to a degree. THe docs are still too

powerful, in my opinion. It isn't as bad if the person says " you're too

complicated, I don't know anything about EDS, etc " but then takes the step of

finding someone to take you on. That ist he least these docs should do instead

of leaving people high and dry. I doubt they would want anyone to treat THEM

that way. As I mentioned they should only be able to refuse those who will not

comply with assessment and treatment.

I hope you can find someone else. Call you medical society or the AMA (are you

in the U.S. now?) and they should be able to tell you what your rights as a

patient are.

Good luck

Joyce