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Recently, I had my follow-up visit with the PM&R doctor who agreed to see me after I was diagnosed with Ehlers-Danlos syndrome (EDS), classical type.  I had seen him a couple times prior to that and was originally his patient for my misdiagnosis.  PM&Rs are physical medicine and rehabilitation specialists, and I personally feel they can be a good fit for EDS patients as they specialize in people with chronic, debilitating diseases and conditions.

I originally saw my doctor before my collagen cross-linking surgery and long before I had my scleral contacts that I’m forced to wear when I have to go out and I literally couldn’t see his face or make eye contact with him.  However, it wasn’t solely due to my vision—it was also due to something I didn’t pick up on for awhile.  You see, my doctor has some type of social phobia and does things like stand as far across the room from me as possible, tear through my file like a mad scientist while not really looking for anything, avoid eye contact with me at all costs, and the most bizarre: putting his head down on the counter when we were in a very small room and he couldn’t escape my gaze or me.  So, the faceless doctor image could also be replaced by a faceless patient I suppose, or an image of this patient talking to the wall to not upset the doctor.

Now, his behavior makes any type of interaction rather difficult, but I’m not one to make fun of anyone with a phobia—I just think they should choose their profession better.  For example, as I tend to have panic attacks on airplanes and yes, I saw the news about the triple-7 that is somewhere at the bottom of the South China Sea southern Indian Ocean, I didn’t become a pilot. Perhaps, I would have been an excellent pilot as I’m very systematic and prefer to be in charge, but darn it, I just can’t get over that free fall back to earth.  So, I went into the non-profit sector instead.  I have many reasons to wonder why this man became a doctor, so here’s a rundown of how my appointment goes to justify my thoughts, and mind you that I have to drive about 45 minutes to get to his office with my less-than-stellar vision.

  • I arrive and have to fill out the same form that doesn’t really address any of my issues and is too hard to see and best of all, my doctor never even looks at it.

  • The medical assistant calls me back and then I get to sit and wait in a chair that kills my body in a boring exam room for up to 45 minutes, when I’d be more comfortable in the waiting room with padded chairs and a big plasma TV I can actually see.  Per the wait, I was going to be 5 minutes late once due to an accident and called from my cell (these are things I should not do with my vision) and my appointment was cancelled and then I was slapped with a huge, no-show fee that didn’t go away until I called someone I knew in the office who took it off my bill.

  • The doctor finally comes into the exam room and asks how I am.  How should I respond when I already wrote “the same” on the form?  I’m also in more pain and beyond irritated by that point.  So, I tell him that I’m hanging in there as he doesn’t really care what I say.

  • He doesn’t ask me about my EDS or how it affects me physically.  He doesn’t offer to get involved with my physical therapy to make it more effective, and he writes my scripts for it.  He doesn’t ask how my EDS affects me emotionally, even though I circled on the form that my anxiety has been worse since I saw him last.  I really question how much he knows about EDS, even though he said he was familiar with it before I saw the geneticist a little over a year ago.  He tends to speak in a hushed tone and when a medical student was with him once, I vaguely heard him say that people with EDS are tall. Sure, a subset of people with EDS have a Marfanoid habitus, but I’m not one of them—that was my maternal grandfather.

  • I basically try to think of something to say to make my appointment worthwhile, but what’s the point when you don’t have a doctor who cares or is interested?  I’ve even asked the one medical assistant I like if he’d rather not have an EDS patient since I formerly saw his nurse and now he’s stuck with me, but she said that’s not the case. So, what is the case?  And if you’re wondering why I don’t just go elsewhere, trust me that I’ve been everywhere in this town and this is as good as it gets.

  • I have my few prescriptions written and there’s a problem with them every time, but as my scleral lenses don’t fully correct my vision and other factors affect my near vision, I tend to need help reading them.  This time, he wrote the dosage of one of my drugs wrong, so I would have run out early.  His handwriting is awful even for a doctor and the assistant wasn’t sure what it said for a couple minutes, but then she rewrote it and had him sign it and he asked her what the problem was and she lied and said that the pharmacy would have trouble reading his handwriting which really bothered me, but I decided it was best to stay quiet about his mistake.  On another prescription, the medication was crossed out and then rewritten, so I hope that won’t raise any flags.

  • And that was it!  Nearly an hour of driving, who knows how long spent waiting to see him, five minutes or less accomplishing nothing in the exam room, and 15 minutes of wasted time and frustration dealing with his inability to write prescriptions.  Then, I had to check out with the rude girl who feels so important behind her counter—the same girl who had informed me on the phone that my fabulous nurse had left the practice and slapped me with the no-show fee in the saga that I wrote about in this post.

So, why is he a doctor—especially for patients like me?  I could easily walk into an exam room, naturally not look at people without my lenses in, not offer much help—although I feel I know much more than this one does—and then write poorly written scripts due to my vision just like him.  He’s not much older than I am so the burn-out hasn’t started yet, not that I like that excuse because I knew some great, older doctors back home.  And if you have a social phobia, then go into research, because those of us with chronic, life-altering diseases that will only get worse need empathetic doctors who actually care and can look us in the eye and put their hands on us in order to feel a pulled trapezius muscle, or tendinosis in a rotator cuff, or subluxated shoulder joints, or any of the other things my physical therapist does on a regular basis and all the doctors missed from day one.

If my PT could write my scripts and order the imaging I have to pull teeth to get, I’d just have her be my doctor because it takes a lot more than having the initials M.D. after your name to actually be one.  No one deserves such sub par care when they’re sick and in pain and the worst thing is that I could be writing some semblance of this post about the majority of the doctors that I have and the hundred I saw before them.

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14 thoughts on “WHY ARE YOU A DOCTOR?

  1. AdamTilted says:

    I so much feel your pain here. My current frustration is the staff at the doctors offices that cannot follow simple instructions. I went to the doctor on Friday because a cold turned into a lung infection. I needed three medication as soon as possible. I gave my doctor the phone number of the pharmacy I needed them sent to and they were sent to a different one instead. I didn’t know this, of course, and kept calling the pharmacy to find out if my meds were ready and they kept telling me they didn’t have anything from the doctor. By that time, the doctor’s office was closed. I had to track my doctor down on FACEBOOK to get him to send the scripts the correct pharmacy. This whole ordeal took about 6 hours. Meanwhile, I can hardly breathe, and it’s not the first time they’ve sent my meds to the wrong pharmacy.

    This is the same doctor’s office that left my application for disability insurance benefits sitting on a desk for two weeks when they were already three months past due. I was a public school teacher, so I know what it’s like to be completely overwhelmed with work, but when you are dealing with people’s lives you really need to get your shit together.

    • U-g-h, I hear you. Between the idiotic 18 year olds who run the office (and they can’t do anything, let alone follow instructions) and the inept doctors, I’ve contemplated going down to Mexico to get 6 months of meds and calling it a day, but I need a ride and therein lies the problem, plus losing your head out in the desert. You don’t even need a script there and I have people pick up Cipro for me if they go on vacation just in case. The final straw for me was the receptionist of the last GP I fired who was literally screaming at me on the phone that my script was at CVS with 9 refills and when I explained that she was incorrect per the pharmacist, she stated that pharmacists lie all the time–as if they have this big agenda to keep their employers from making big bucks off our meds. I suggested that she call to verify and she said she didn’t have time and I told her that I didn’t have the minutes on my cell and she actually gets paid to handle all that. So, she called and then I got my med filled. Why is it so freaking complicated and dramatic?

      I’m glad you could track down your doc on FB! Good one. I like your big point that if you worked in public education (or non-profit like I did and a wee bit in bilingual ed.) and put in way more than the job ever paid, then what’s their excuse? You know, I really hate excuses because I filed my own SSDI and deal with insurance and doctors and CVS for hours on end and yada yada while in this state of health (and vision), so no one gets a free pass with me.

      While the insurance companies have just ruined healthcare in the US, if we’re not even getting our allocated 15 minutes and things like important disability forms and our meds are ignored or screwed up, then the doctor is also at fault. And, we can go in circles about how the doctor hires the office manager who hires the idiotic staff (and they’re usually just as bad) or they refuse to do scripts electronically, although that didn’t help you out much.

      All I know is that in the 13 years that I’ve been stuck in this ridiculous system and fired and hired more docs than I care to recall, it’s only gotten worse and that scares me to no end! How will this ever get better?

      Thanks for sharing and hang in there. Hope the lung infection is starting to clear up, too.
      A 🙂

  2. dyspatient says:

    The paper forms with itty bitty print and itty bitty spaces to write in KILL me. They just absolutely kill me. So unnecessary.

    Your doctor sounds like a peach. Sounds like that neurologist I saw. God I wish you lived someplace with better providers.

    • I just had to fill out and/or sign over 10 pages of redundant forms for the 20/20 crowd AGAIN for yet another new doc because the crappy, new internist (to replace crappy, old GP) won’t deal with “women’s wellness exams.” Argh! You know, I don’t think they read anything on there and they make copies of ID/insurance cards so if it’s illegible or I wrote the wrong thing, it probably doesn’t even matter. I wish I knew a language other than Spanish and filled out the whole form in say…. Urdu. Haha. Then we’d know.

      I’ve heard the worst things about neurologists. I saw one in CA who was actually nice and interested, but probably a fluke. I could see my doctor being a cold and weird neurologist (who puts his head in his arms on the counter), but being a coroner would probably be the best match since his patients would all be dead. :/

      • dyspatient says:

        Yeah, one of my students has a thing about neurologists too. She’s convinced there are none that are decent around. I liked the guy I had before he had a big tantrum and left the state (for Florida, good, enjoy that).

      • A big tantrum! I hope he’s drinking daiquiris with his Valium now. I think I’ve had a few docs who’ve had temper tantrums, too. Well, it’s more like they just lose it because I brought in a journal article to discuss and who the hell am I to do such a thing??? It’s like the more I try to get into their head to figure them out, the worse off I am–and that includes the MD I’m closely related to. I’m just so sick of it and that’s why I titled this post the way I did.

        Btw, I got lost in your comment on the forms (too many forms to keep track of), but I used to go to a good, PM&R practice here that closed (nooo!) and they had ALL forms online–including the update one you fill out that they actually did read over. As I tend to show up just on time, it was nice to print those out beforehand and fill them out the night before (and no vision issues then). It should be mandatory for all doctors to have websites with all forms online. Argh.

      • dyspatient says:

        Ah, well that was what I liked about my former neurologist. He wasn’t like that about articles or patients who think. He seemed to like smart patients who knew things about their health. He just got cranky about health care in my state and up and left, sending a whiny letter out that left patients with no time to get my records before he packed up and took off. 😦

        Sorry you got lost in my comment. Not sure which one that is now. Someone needs to sue a big hospital for paper forms under the ADA. Equal access. Having to sit there with a reader (I’ve seen this happen) cuts into the appointment time and reduces the quality of care. Therefore, it is not a sufficient accommodation because it unfairly reduces access to care for patients who can’t read or write on those forms due to disability.

      • Agreed! We don’t have the big hospitals out here so it’s more annoying dealing with 10 specialists in 10 different practices. I hope something is done as I’ve about had it. Oh, I got lost in which forms I wrote about in my post and then thought you were talking about those packets you have to fill out. Hate those!

        Also, I had a doctor who was so awful in general and the day I had an appt, he literally walked out the front door with his Bermudas on and waved to me in the waiting room. I saw his crappy partner instead and found the faceless doc I see now after that. Forget a letter, he literally just walked out on a day he was booked solid! The best is that he’s now practicing across town and he’s apparently pulled this stunt several times. Does the medical board here do anything?

        Lastly, I read this article and thought of you. I was rather confused by it, as in wtf, but then I read some of the hundreds of comments and no, the article is just garbage like I thought and why would I question myself–it’s like part II to my post. I can’t figure out if the comments are from members of AARP, but if so, I really wish they’d do more than leave comments (although well done). I remember you saying that change would come when the baby boomers had their day, but they’re in the system and where’s the change? Enjoy (and you could probably turn this into a great post):

      • dyspatient says:

        There’s no info given on how the author got her information. I guess I should take her word for it? I’d rather see a survey to back that up. The comments are great. I think the big problem is that patients have no real place to effect change. No forum other than crabbing about it on the web. You can vote with your wallet since there’s so much pressure from HMOs to keep doctors, even the good ones, locked in a system that rewards drive through medicine and punishes thoughtful, compassionate providers for spending too much time with patients.

      • I know; great comments! I think her info came from interviewing irritating doctors who don’t have a clue. I’m so tired of hearing about the 15 minutes–I don’t get 15 minutes with anyone so I’d like to know who these docs are who don’t book 4+ patients for the same time slot. I always have a small list printed out that I just give to the doc if needed at the beginning of the app, which I think speeds things up and gets things done. And then the part about self-diagnosing or asking for tests–if I could order my own like you can in other countries, I wouldn’t even go! Jesus.

        I’ve never been in an HMO because I heard awful things even before I got sick; I had PPOs via work and still do. Actually, growing up I was in a co-op (kind of HMO-y) and it’s the only one of its kind in the US and it worked (typical Seattle). You only went to the docs at the big clinic and there was an affiliated hospital and pharmacy, but they had several locations with time. The best is that I never had to deal with records and if your GP was booked, you had loads of others you could see that very day!!! Obama and crew looked into it when putting together the ACA, but it must have sounded too socialist. Haha. My uncle was a doc there for most of his career and I was even born there! So, a different model that I think would really benefit the chronically ill and I never had an issue when I needed to see a derm or GI doc, but I had to leave after I graduated college (pre-illness) and it wasn’t part of my employer’s benefit package.

        When I got sick and went to CA, the rheum who gave me the misdiagnosis told me that someone like me would die in an HMO, as he didn’t participate in them and lost a lupus patient that went that route and almost died and he somehow stepped in and got her to LA via a medivac. Yikes. So, in the PPO system, what can anyone do either? I just think the system is so big and broken and with the insurance companies having all the power, we’re all screwed. It’s really scary–especially out here with the idiot docs. My old co-op is sounding better by the minute, but stuck in the desert as you know. 😦

      • dyspatient says:

        I’m in a PPO right now and it’s worse than the last two HMOs I had. They question everything. They send all my correspondences to my husband, because he’s the subscriber. Never mind that I’m not a minor and it’s health related – I don’t care that Dr. Patient sees it, but some partners might….my peeve is that Dr. Patient is very bad about opening his mail. The only thing they have going for them is that they don’t require a primary care, which they interpret in a way that means when I do see my primary care doctor, I pay a copay of 2.75 times what it would be if they’d let me designate him as such.

      • That’s odd–especially as PCPs are usually less money than a specialist (or the same), but I’ve never had a higher co-pay/co-insurance. Actually, that would work well here with the crappy PCPs who you never see as they can’t do anything other than order basic lab work and scratch their head like a monkey. Lol!

        What I’ve heard, and maybe it’s just the HMOs where I lived, is that the PCP you’re assigned to never lets you see a specialist. That was the case in CA, as there was only 1 HMO in that area which is what that rheum was so worried about. I had a co-worker who clearly had severe IBS-C and I told her what it was and that there was a new drug for it. She was so excited and told her PCP in that HMO and not only did he refuse to prescribe it and state that it wasn’t IBS (?), he wouldn’t refer her to a GI to see if something else was going on. I think that freaked me out to no end since I had just seen all the GI docs in Seattle 1-2 years before that for all my fun issues. Argh, can’t we just have one freaking system and call it a day?!

  3. ShimonZ says:

    I believe that were I in your position, I’d stop going to doctors altogether, and try my luck at drinking carrot juice.

    • Funny, Shimon. I’m allergic to carrots and about everything else that grows out of the ground! I developed all these odd allergies 4 years ago and now all the yummy foods make me itch like crazy (or my face blows up like a balloon if I eat nuts) and while I do know why, my allergist has officially given up as he hasn’t a clue on how to fix it all. I saw him today and I think that will be the last time, so I can cross one doc off the list at least.

      I would REALLY like to get rid of many of my doctors, but the problem is that I need medications to stay this miserable (I really was even worse over a decade ago and just threw up all day from the pain) and in our for-profit medical system, they make you keep coming back to get refills so they can make money. Aside from the meds, I do absolutely have to see an eye doctor to monitor my keratoconus and other eye issues and then my cardiologist as I have heart problems from EDS.

      So, while I’d like to never leave the somewhat comfortable recliner with my heating pad and sip my green tea (no itching), I’ll feel worse in the end. Damned if you do and damned if you don’t. I will say that with nationalized healthcare like you have in Israel, I could probably just see one or two doctors for all the medications I need and just a couple specialists and THAT would make my life much easier. Now you see why I have issues with the US!!! Thanks for your funny comment and btw, I’m severely allergic to tomatoes too, so no tomato juice anymore either–and to think we could have debated about the benefits of technology on your new balcony with Nechama while sipping tomato juice with your “additives.” 🙂

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