Had To Laugh

[lorrie]

I was reading some posts about our symptoms and I just had to chuckle a little...we throw around all these medical terms like we are a bunch of doctors. We have all had to learn way more than we should have to (and more than lots of actual doctors know) about this crazy disorder.

Now that I think about it, we sound quite intelligent...lol (We might as well laugh)

[Ernie]

Hi,

I had to learn a lot about my disorder to protect myself against unknowledgeable doctors. Now I also use my knowledge to help my family.

[firewatcher]

In essence we are specialists, so we should command a higher co-pay! I know I had to learn a lot, really fast, and they don't teach you this kind of stuff in art school. After my last Primary Dr. sent me to a psychiatrist (who sent me to a neurologist) and told me (and my husband and another Dr.) that I was doing this for attention, I got mad. Then I went into "little red hen" mode and decided to do it myself. I had one doctor who believed that it was not "in my head." We know ourselves better than the doctors, and I know that I did not always feel like this! If we sound like doctors, I can certainly list a couple doctors who sound like idiots. Laughter is the best medicine, so take two and call us all in the morning!

[momofsara]

LOL------So true, so true. We have educated ourselves to the point that WE embarrass the docs. Its a rare doctor who will welcome an informed patient and is willing to be further educated himself. My daughter has told people that I had her diagnosed before we heard it from the doctors. I spent hour after hour on the computer(as I know all of you have) and had it narrowed down to 3 or 4 conditions and it proved to be that she actually had ALL of them plus other stuff. Anyways, I laughed when I read your post, it really brings things out that we all think, but sometimes we need a laugh.BTW, can I come to the party and bring Sara??....

[Maxine]

This is so true. Makes me wonder if I would have done well in medical school. I always got an easy A in my heath classes.

When I went to medical coding classes the anatomy/psysiology classes were an easy A also.

I don't mind doing the research, and like to find information to help other people also----------- There are times when I can't deal with researching because you just want to get away from this, and find something to take your mind off this.

It's sad we have to do our own research to learn about this because a lot of our doctors don't know what this is. It's also very sad that docs don't respect us for all this work we have done, as they usually end up thinking were have a mental problem because of how much we know, or think of us as hypochondriacs. I've had a couple of docs who were actually impressed with my knowledge. BUT, I had some that thought I was "dramatic", and one who thought I manifested my illnesses in my mind. My mind is so powerful that it caused my spine to be a train wreck----

On one of my SSDI appts with a psychologist it was said I have somatization disorder, and that my only hobby was researching medical information pertaining to my illness that doesn't exist. The report ended up getting dismissed from the hearing.

Maxine :0)

[masumeh]

THat's true. It becomes easier to use a term than to describe something (which takes more words and is sometimes vague).

Also, however, some people in this forum are actually involved in the medical field. Cardiatec is a cardio-technician (if the name did not give it away, the terminology might). There are some nurses and some doctors in here somewhere also. But yeah, everyone sort of becomes an expert and learns the terms that apply to their symptoms. It helps us understand literature about POTS, some doctors who like to use terms, and as I said already, it's simply a shorter way of saying something.

[delphicdragon]

Gotta be careful with the medical terminology though. I told a doctor I was experiencing "near syncope and appeared to be dropping my pulse pressure" and he looked at me like I had grown two heads. Then told me that I was obviously just a hypochondriac who needed to get out more and not focus on my "medical" problems.

I told him that I'm in the scientific field and that phrase fit what was happening to me. He said that I shouldn't diagnose myself and that he was the expert. Needless to say, I didn't go back, and have learned to explain what I'm feeling to new doctors (especially those in the ER, who seem to be prone to the "she's mental" conclusion) in non-scientific terms.

Also having an illness that sounds like an illicit drug does NOT help. I've told so many nurses in the ER that I have POTS and gotten the response, "Well how many joints did you smoke?" Usually that leads to me misunderstanding and saying, "My joints hurt..."(Never a good cycle to get into) Most apologize AFTER they've run a drug screen.

The doctors that know me, know how I describe things and most are happy that I speak on their level. I find I use less medical terminology when I'm sick with something not chronic.

Seriously wanting an honorary doctorate for all the research I've done on POTS (and Ehlers-Danlos) but the profs in grad school are making me actually do the work.

Sara

[ajw4790]

Hi!

Yeah, the terminology etc. can get interesting! I too have to watch what I say at appmts. Such as saying, "it isn't so much syncope as it is near syncope" or "no it is not vertigo, but lightheadness and dizziness" etc. (I just want to add here my frustration of some drs. not knowing the difference btwn these terms, and thinking that dizziness and vertigo mean the same thing- they don't...).

I too am in the Allied Med field and as a student I am taught to use these words, but then when back to "my life" I have to dumb myself down. Frustrating! It does help me though see the other side, and teach me to have more respect for my patients that do the same thing, and not assume they are a hypochondriac.

[turtlefairy5]

Right now I'm having copies of all my med records sent to Voc Rehab and Soc Sec, trying to get some resources going. This morning I stopped by Voc Rehab to drop off my resume. My caseworker opened my file to check and see which doctors have sent records, and to insert my resume. As she was flipping through, I took a peek at the records she has so far; my psychiatrist was the first to respond (he's a very adament record keeper, I bet he was tickled pink to actually share them with someone, ha ha), and his notes from our visits made me sound like a nut! I mean, I know he's a psychiatrist, and I know I have some mental issues going on, but please! ack! This is the same way I felt reading over my records after I was in the psychiatric hospital (major mental breakdown in '03).

I hate it when psychiatrists put things that you say to them in quotations; for some reason that automatically makes you sound stupid/crazy. For example,

Pt complains that she is "upset" and needs to take "extra" Ativan after she speaks with her father on the phone.

see what I mean?

Also, I didn't like how my voc rehab caseworker, seeing the terms "depression" and "PTSD," seemed to quickly decide that those are my disabilities. Those are part of my disability, yes, but not all of it, and not even the main part (main problem right now is the fatigue caused by POTS). Still waiting on the cardiologist to send in his records.

Anyhoot, I very much relate to the experience that many doctors seem to have superiority complexi when dealing with their patients.

harumph.

Amber

[Michelle F.]

LOL I did have to laugh when I saw this link and read all of your posts. I went to a UROlogist last week and one of the first things out of his mouth was, "Are you a nurse?" I've heard this A LOT lately. Anyway, as he shook my hand to leave the room and then turned to my husband, he said, "Smart lady!" Made me feel terrific, but I do wish it had been one of those doctors who helps me in other areas of my health- neuro, cardiologist, etc.

Another reason I had to laugh...if you have ever watched "Everybody Loves Raymond", my husband has started imitating Raymond from one of his scenes where he says in an exaggerated way, "Oh, look at me at my biiiigg words!" making fun of Debra, his wife. I don't try to sound smart OR talk over other people's heads, but these medical words have just become a part of my regular vocabulary. I don't even know I am doing it!

Michelle F.

[mkoven]

This is really interesting. I'm a researcher with an interest in how people use different "dialects" to display their identities. I've actually thought about shifting topics to look at doctor-patient interaction to look at exactly this type of thing--how doctors and patients shift in and out of "everyday" talk and medical lingo, and who's entitled to use which way of speaking, etc. The one thing holding me back is that it's awfully close to home and might drive me batty. (I find it a little easier to look at situations that are at least a step or two removed from my own experience). But I"ve certainly had similar experiences!

I've found for myself that the best way to describe my situation is to describe the symptoms in "layman's terms" as neutrally as I can. So, "When I stand up, I feel really sick. My vision starts to go, my head pounds, my chest hurts, and it's hard to breathe." Or if I do refer to some test, I give "just the facts"-- my bp drops 30 points, or such and such a test showed x. So I try to minimize my use of medical jargon and to report my symptoms as neutrally as I can. Sometimes seeming too upset can make them think it's anxiety. If I use the lingo, I'll say ANOTHER DOCTOR said I have/might have such and such-- so I'm not the one using those words. Or I was told that I might have blablabla. So some legitimate person, not me is doing the diagnosis.

I have had doctors react to me negatively because I ask a lot of questions and do seem a little too knowledgeable. Some like it, some are threatened. As one doctor said, the combination of being a professor and being medically complicated (i.e. not easily fixable, with a bunch of stuff going on) means some people won't like working with me. I don't think I'm obnoxious about it, but I'm not afraid to challenge. (And I don't tolerate arrogance. Working with people in academe means I've learned to detect it and not put up with it as a substitute for really understanding what's going on.)

[icthus]

I relate to almost everything. I too have been maligned by physicians and have learned to feel them out and mirror the vocab and phraseology to fit their definition of how a patient should communicate. And if I have to play this game, I don't return.

Now when I see a new physician, I always give them a brief bio and then ask, "Would you like me as a patient or should I go elsewhere?" Of course they always say to stay, but based on how they answer (a role reversal in evaluating vocab and phraseology and body language) I decide to reschedule or go elsewhere based on the physician's response. I'm too sick to play games with the doctor. Either we communicate openly and intelligently or I'll cower someplace else, where I can at least hold a mutually respectful exchange of thought with the highly specialized person I've hired to think and respond to my medical condition. Yes, the patient hires the doctor...an interesting perspective I was coached to accept.

I've got great doctors right now. Yea.

And...for the record, I was so happy back in the days when my medical knowledge could be summed up in one word: none! Those were the good ol' days.

[Maxine]

Yesterday I had an encounter with a rather rude, and very ignorant doctor with a Large Medical University---NOT IN MY STATE----but only 45 minutes away. I thought I was going to fall off my chair when he ask me, "what did these doctors put into your head?".

I told him these are the facts, not "things", put into my head, and to look up the data anywhere he can find it.

He got smart with me, and I gave it right back. I'm glad I was able to understand the language, and I don't think he expected a lowly person such as myself with only college credits, NO DEGREE, to know this much. Nor did he expect me to stand up to him. At first I was disappointed and hurt that yet another local doc doesn't get it. But I felt good when I told him, "how do you think the pannus growth got on the odontoid bone?"-----------I told him it's friction, and this means it's rubbing on something it's not supposed to----------how about the brain stem--------------- A doctor should be humble knowing that they have a persons life in their hands, but some of them pervert this into some kind of power trip.

I'm grateful other docs get this, but I have to travel to see them. They are good docs, and have extensive knowledge with EDS, and what it can do the the cervical/cranial junction, and the rest of the spine. In fact one of them, Dr. McDonnell from the NIH study will be the key note speaker at the EDNF conference. My regular EDS doctor is Dr. Brad Tinkle from Cincinnati Children's Hospital. I saw Dr. McDonnell at the EDs study, and got lot of helpful information.

The orthopedic surgeon is also very good. There's good docs out there, but you have to search for them.

Maxine :0)