The Emergency Room Visit Guide for Crazy People

I’ve been doing a lot of time in the ER lately. Today I saw a girl after an intentional overdose (she was ok).

I hope I treated her in a way that didn’t make her feel uncomfortable. I don’t know the shrink who was on duty, don’t know if he was any good. I would have offered to do the psych eval but that’s not done in this hospital.

It’s strange, I didn’t make a long or deep connection with her, but at least that kind of stuff doesn’t freak me out, which probably makes me a better doctor for her than anyone else who could have seen her. I didn’t do the awkward deliberately not asking about what happened, and also didn’t do the “overly sympathetic from someone who has no idea what they are talking about” thing, and I also didn’t do the “gawk at the accident” thing either that some docs do – immediately asking extremely probing and personal questions loudly (“Why’d you do it? Were you raped?”). She could have been seen by that attending who flipped out at me yesterday. At least I spared her that.

I asked if anything particular had happened recently. She said no, she just was tired of it all. I checked her body. I hoped she could tell I wasn’t one of those doctors, the incredulous ones, the holier-than-thou-how-could-anyone-do-such-a-thing ones.

I wanted to let her know that somehow, I understood. I hoped she saw something that made her see it – maybe one of my piercings, or the blue-black nail polish.

When I see how hard it is for some patients to once again face someone who looks down on them (and this isn’t only psych patients – it also is common with gay patients, the elderly), I wish I could give them a secret signal to show them I get it. We need a Crazy Handshake.

Then I thought about how much I hate my clothes, how I look now and what she must see, my goth makeup all gone (well, mostly, I still do the pale thing), my hair now colored a very natural sunny blonde. I’ve been working so hard for the last years to fit into the medical world, that upper middle class, extremely conservative but not really stylish look.

And I’m old. My days of cool are long gone. Someone who looks like me couldn’t possibly understand angst. Right? I proved it yesterday.

* * *

On a few medical blogs lately, there have been posts and discussions about certain behaviors in the emergency room – one of them being a patient refusing to open his/her eyes, presumably because whatever symptoms they are having are so horrible.

Now I know that we crazies are often treated very badly in the ER, sometimes justified, but usually not. See the comments on this post, especially that of Sophie, to get the idea.

So here it is: A Crazy Person’s Guide to the Emergency Room, with rationales from the other side. I am certainly not endorsing the opinions held by the medical profession or their behavior, I’m just attempting to explain a reality. I’m going to try to show examples of where the miscommunication occurs.

Hopefully this will help you navigate that reality more successfully. And plenty of not-crazy people could use some of this advice, too.

Caveats: One: this is NOT medical advice, and will not be construed as such. It is for informational purposes only. Do these things at your own risk. Two: you can do everything right and still end up fucked over (again, see Sophie’s story). It’s not your fault.

First of all, your goal is to look and act as normal as possible. Again, I’m not one for insisting that everyone has to act the same and that crazy is necessarily worse than not crazy. But in the emergency room, it is a truism that if you have the ability to yell or complain loudly, you have at the very least healthy lungs, a patent airway, and some cardiovascular reserve. If you get triaged to wait, it is probably fair.

Example: The guy that threatens the nurse to get him seen faster is not going to get anywhere. What he thinks: You have to be noticed or you’ll get ignored. Reality: Emergency rooms all have systems of logging in patients and you will be seen when you will be seen. You cannot change ER bureaucracy by force of will. It would be easier to change the laws of physics.

Be unfailingly polite. This is true for everyone, but counts double for crazies because you have two strikes against you. Yes, you may very well be panicked, feel ignored, or any number of feelings that are difficult to deal with while you are feeling well, not to mention sick. If you’ve been there forever and you do think you might have been forgotten, it’s ok to remind them that you are there. But do it nicely.

One common and very bad approach is threatening that something horrible is going to happen if you aren’t seen immediately. “You’re all just standing there while I’m dying in the waiting room!” is a very bad strategy. This gets you labeled as crazy, and in the medical world, you can be crazy, or sick, but not both.

Example: Patient who has been waiting a long time asks very pointedly when he will be seen, or if “everyone is just going to sit on their asses all day.” What he thinks: I feel ignored, and I am angry about having to wait, and want them to know that I am angry. Reality: This approach brings nothing to the table except making everyone more upset.

Another common misconception is that a few hours make a difference, that something bad will happen to you during the wait time. This is understandable when you are in pain and also in a state of great uncertainty about what is going on, both with your body and with the ER system. There are very few medical conditions that need immediate attention. (One exception – you can’t breathe due to asthma, choking.) Fever doesn’t. Abdominal pain rarely does. Dizziness almost never does.

If you are in the waiting room and something suddenly changes in your state, it’s also ok to inform the triage, calmly, that it has happened. If it really is something bad, they’ll know and move you up. Again, you must do this in the approach that they are on your side and want to help, not that they are trying to push you back. Do not demand. Tell them, “Hi, when I came in, I had these pains in my chest, but now I feel like I’m having trouble breathing. I’m just updating you/just worried – just so you know that something is getting worse.” Do not demand to be seen, and don’t do this unless something really changes, not just “a little more nausea than before.” Do not say, “It will be all your fault if you leave me out here.”  Threatening to die will get you pushed to the back of the line.

The reason I say this is that I know what it is to have a much lower threshold than most people for fear, anxiety, and even pain. I know that we get freaked out faster than someone with perfect mental health. But you have to hold it together – it’s good practice for you, and it will ultimately get you better treatment.

It is hard. On the other hand, it isn’t that they are ignoring you while playing computer solitaire. Sadly, it means that someone is sicker than you are. Try to be thankful that you aren’t that person.
A few groups have strikes against them before they even start. One group is women – you are automatically more hysterical and sensitive to pain and “fretting.” Also true if you belong to an ethnic minority which is more expressive than the dominant culture. Act as WASPy as you possibly can. Look to those repressed cowboys in Brokeback Mountain for inspiration. That’s your goal. You want to show them that you are as anal and uptight as the doctors in suits walking around with the poles up their asses.

Example: A woman is with her 18 year old daughter. The daughter has stomach pain. The woman begins screaming to be seen immediately (while many people who arrived before her are still waiting). She will be seen, but not any faster. What she thinks: “I am standing up for my daughter, who is in pain. I’m doing what any mother would.” Reality: All she is doing is making the medical staff want to get away from her as quickly as possible. But worse, her daughter is now at risk for a quickie evaluation because everyone wants to get away from that mother (after all, no one likes to be yelled at), or at risk for excessive medical testing, because a mother like that is seen as likely to sue.

Do not exaggerate your symptoms and do not convey them in a dramatic manner. This is the kind of thing that the recent posts around the internet discuss. Explain what happened. It is ok to be upset if what happened is out of the ordinary. It is ok to say that you are scared in general, or scared about x, y, or z. But it is not ok to flail around, speak in a whisper, or delay answering simple questions for thirty seconds while you wince. You are an adult, “help us to help you,” etc. People are under the misconception that saying their pain is worse than it is will get them taken more seriously. What will happen in reality is this: you will either be dismissed as crazy because your pain is out of proportion to anything you actually have, or you will end up getting high doses of radiation as unnecessary diagnostic testing is performed because your pain makes the doctor worry that you have a more serious condition than you actually do.

What you think: “I am really bothered and frightened/in pain/upset by my symptoms and I want to be sure they know that.” It is often very hard for crazies to express ourselves when upset in a calm or direct way. Reality: please tell me if you are frightened or hurt or your mom had the same symptoms and died of cancer and you are terrified. I will do whatever I can to help, but by exaggerating, the natural reaction of a doctor is to undervalue everything you say.

Give your own medical history. Do not let someone else speak for you. Walking in and lying down and gesturing for a spouse or family member to explain what happened is only acceptable if your disease directly affects your ability to speak, such as a stuck fishbone in your throat or an asthma attack. Rationale: The mentally ill are seen as incompetent and infantalized by the medical profession and society at large regularly. Do not do this to yourself. Show that you are a responsible adult.

Tell me what’s really worrying you. We can’t help you if we don’t know. Example: If you come in for stomach pain and you want to be evaluated, I will talk to you about your pain, examine you, and possibly do some tests. But if you are afraid you have ovarian cancer and want me to specifically say that you don’t, I won’t, because I won’t know that this is what you need to hear. Medicine is a focused discipline. There is no such thing as a “test for everything.” Evidence is gathered slowly and most tests only rule in or out what we already suspect.

In this same vein, don’t insist on certain tests. People in the ER often think that they need CTs or some other test, and RIGHT NOW. They often also get into some kind of us-versus-them mindset, in their panic or frustration, it seems like doctors or hospitals are trying to withhold tests for money reasons or laziness. We become the authority figure that says NO, at the exact moment you’ve unfortunately been thrown into a state of dependence on us for help.

Believe me, doctors are scared enough of missing something or getting sued that they err on the side of caution. But we also want to protect you from things you may not know are dangerous, such as radiation in imaging (I cringe every time I have to order a CT), or invasive and dangerous or unpleasant. If you insist, you’ll probably get it, but there’s a thing called “pre-test probability,” and if it is low, there is more chance of the test harming you (by being falsely positive, leading to more tests, exposing you to contrast material, etc) than of helping you. It is very hard for your doctor to be in a situation where he is working in your best interests to the best of his abilities, and be accused of “withholding.”

Example: I recently saw a young patient with new onset psych issues, who had a few recent physical problems, also after extensive evaluation, most likely related to stress. She had appointments for several studies and specialists. Her parents were insistent that we fix her right now, didn’t want to leave the ER.

What they were thinking: “We want our baby girl back how she was. Our heart is breaking.” Reality: a problem that has been building up for a month rarely can be fixed in a few hours in the ER. Her father nearly insisted on invasive traumatic procedures, at 3 AM in the ER. He was furious with me that I refused. But I felt obligated not to perform invasive unnecessary genital procedures of questionable benefit to make someone’s father feel like they got “full treatment.” Honestly, the easiest thing for me to have done would have been to drag the poor girl behind a curtain and stick her up in stirrups (and if she was lucky, no one would barge in in the middle). If you insist on something, you may end up getting what you ask for. This might not be good for you at all.

This brings us to another point: have reasonable expectations. An emergency room treats emergencies. The previous example is good for that. This same father also said, “Yes, we have an appointment for an ultrasound next week. But it just can’t wait anymore. And if you all, with the big hospital, can’t fix it, how is some tiny ultrasound clinic going to help?” This is a common misconception, that the ER can solve problems that are best treated in the community.  The emergency room and the hospital are not “better” than your family doctor; they are different services. Your primary care doctor will direct you to the right one for your problem. Hospitals are horrible places for sick people, and any good doctor sees hospitalization as a last resort.

Now, my specific advice for people with mental health issues:

Consider not disclosing. This is a very tricky issue, and I cannot officially recommend it. However, I regularly practice this myself.

Know, however, that if you get caught, it will backfire. See my comment in the comment section about what happened to me at the gynecologist after I tried this. If you have an extensive medical record at that hospital and the minute they open the computer they will see it, well, you’re screwed. If you have recently started or changed a medication and there is any chance that your symptoms are related, do not follow this tip. On the other hand, if you are coming in with dehydration from stomach flu and you’re just going to get fluids, do they really need to know? Probably not.

Cases in which case you NEVER should hide your psych history and meds: always tell the truth to an anesthesiologist, if liver or kidney disease is even a remote possibility (almost all drugs are metabolized through one or the other), if you have glaucoma, in a life threatening situation, if you are going to undergo surgery or a diagnostic procedure, or heart rhythm problems, or if you suspect an overdose/too high levels of something.

Diagnoses you should almost never disclose: the reason being that they have no bearing on anything and will get you treated like a crazy person: fibromyalgia, irritable bowel syndrome, borderline or any other personality disorder. These diagnoses are fairly meaningless as far as interfering with any medical treatment and are not terribly reliable. I’m not condoning and I know that people suffer tremendously from all of them. I’m just telling you how it is.

However, if you have undergone an extensive workup, for, say, stomach pain, and it found nothing, and your diagnosis is IBS, be able to tell what tests you have had done and what they found, or didn’t find, without saying IBS. Save the IBS management for a trusted doctor who knows and respects you.

If you are being treated like a crazy person, or get caught hiding the crazy, it is ok to address the issue. I’m telling you now, because you need to plan for this ahead of time because it will be too upsetting when it actually happens to think of the right thing to do at the moment. I’ll go back to my example at the gynecologist. I was too busy fighting back tears of humiliation and rage, but the best thing for me to have done would have been to say, “Yes, I’m sorry, I didn’t tell you because I’ve had bad experiences with healthcare practitioners before. I guess that isn’t fair to you to prejudge your reaction.”

Notice something important here: I am without doubt the one who was wronged in this situation. I am the one who deserves an apology. But I apologize to her. Fair? Hell, no. But it is practical. Think of it as a preemptive strike. Take pride in the fact that you are being the better person.

The practical advice: You have, every right in the world to be furious enough to start breaking office furniture over this treatment. But this will not get you anywhere.

If you get a bad vibe immediately with a new doc, it is fair to say, “I’m sorry to have to ask, but I sometimes am worried that doctors won’t take me seriously because of my diagnosis. Are you ok with it?” at the start of a visit.

In an ideal world, we’d have the secret sign, and you’d be able to walk into the ER and give a little signal that means, “I need a crazy doctor, please,” and every ER would have me as a doctor, but only a select crazy few will be that lucky. (Haha, is the new med making me grandiose?)

(And I’m not sure how well this would work, because the doctors with mental illness are often the toughest and most anti-mental illness, it’s compensation or projection or one of those defenses I forgot.)

If the doctor has already dismissed you as crazy, you might try something like, “This is very awkward for me, but I’m getting the feeling that my diagnosis of manic depression/affective psychosis/anxiety/whatever might cloud the issues at hand, it’s happened to me in the past.”

Again, remember the above rules, always be exceedingly courteous and never be accusational or confrontational. You probably have a right to jump over the table and choke him, but do not do it. Remember, you want to be more staid and controlled than he is. Do not burst into tears of humiliation and frustration. Do not open with, “Do you have a problem with me?” or “You’re treating me like a child!” or “The way you are treating me is derogatory.” You may be absolutely right, but remember, he probably isn’t doing it on purpose and likely isn’t even aware he’s doing it. He’s not a bad person, he’s just been through a long, brutal socialization process into a subculture with very specific beliefs about mental illness. Keep your tone as pleasant as possible, even if you are about to lose it, because that’s what people who are reliable and don’t have mental illness do, at least in the eyes of the medical profession.

Your goal is to present yourself as a responsible adult, aware of yourself, and understanding and accepting of your diagnosis. Keep it incidental. “Yes, I have manic depression, but I’m here because of stomach pain today.” If you are matter-of-fact about it, and don’t make a big deal, and show acceptance, you already are halfway to getting them to be too. Doctors don’t always understand mental illness, and even if you are perfectly calm and sane, you can always fall on a jerk. Try to remain calm, express yourself in words rather than other emotional or physical forms. I’m not saying it’s wrong that you or I have trouble with emotional control at times or are easily upset or sensitive to pain. I’m just saying that the medical subculture has little tolerance for that, and it helps you to speak their cultural language.

* * *

The “me” update, for anyone who is interested (and thanks to everyone who wrote): I took the bupropion with valium (to cut back on the shakes and shivers and all that, and the inevitable panic attacks it will induce) and actually had a much better day. It is amazing how fast that shit kicks in; I’ll remember it whenever I need to get someone out of a depression fast. (Is it really that different than slow-release cocaine? I sort of don’t think so…) I don’t feel good but at least I can move again. It stopped the suicide plans instantly, because I suddenly don’t feel so hopeless and overwhelmed…again, because I can move. I saw patients at a decent rate. The amphetamine-like action, I guess.

Of course, I also almost vomited and vasovagaled for no reason (I turned my head a little fast and that set it off) in the middle of the day. That’s why I quit it last time. But I don’t really care right now.

I think seeing that girl first thing in the morning might have been just what I needed to remember there is a reason I’m here. And maybe to remind me that what I’m going through isn’t that rare.

I also had a long talk with Jake about what had been happening. He also suggested firing the shrink, finding one in the big city an hour away. I admitted almost killing myself, how frightening it is to suddenly be totally impaired, to lose touch with reality so quickly and to set myself to planning a suicide so fast.

He reminded me that it’s just how I am built, I go down precipitously fast and low, but come out of it too, respond to meds fairly quickly. I said it scared me that the shrink just wanted to throw benzos at me, with no anxiety indication…that in his eyes I’m at the “just shut up” stage of medication. He agreed with my concern, and also with my reasons for not wanting to take the other meds out there. I guess I really needed a friend. I hope I can repay him somehow; I know having to sit and hear the details of someone else’s psych problems is about the worst thing in the world.

Right now, another close friend of ours is ill and we are quite worried, our circle has taken a lot of hits lately between me and that.

Oddly enough, that horrific yelling and failure, well, I’m trying to turn that into a lesson too. That I can fuck up too, and it isn’t the end of the world. That I’m not less loved or less valuable as a person if I’m not perfect. That I can forgive myself. I really couldn’t help fucking up this time. I was that bad. I didn’t fuck up that badly. I did not deserve that. I mean, I did, my performance should have been much better, but I didn’t really deserve that.

You would think that with my perfectionistic traits, this would have been a disaster, a control freak’s nightmare. I let the pressure slip for one minute and look what happened, a few days of bad performance and they crack down on me like that and my whole reputation is ruined, everyone’s pissed off at me, thinks I’m lazy. This should be exactly what I’m afraid of. Normally, I would punish myself one thousand times worse than what I got yesterday.

But I’m deciding to not let it be like that. I did fuck up, but I could not have performed better at that time in that state. I was doing the best I could while very unwell. I did not endanger or hurt anyone. Plenty of doctors perform a lot worse than that every day. I am not a horrible doctor or a horrible person.

And also: I can get sick or break like anyone. (Next major step: admitting it to someone when it happens.)  I can disappoint people, people can think I’m lazy. I won’t die from that.

I can’t help wondering, though, if it’s a good thing, or the first step in a long road downhill. And I’m still amazed at myself, keep waiting for the guilt and self-loathing to begin.

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11 Comments

  1. I love this list!

    And I really admire you. You took ownership for your mistake and then didn’t let that break you, even while you were feeling badly.

  2. Sarah, great advice. Damn shame all of that is the patient’s responsibility, though. I particularly noticed “tell me what you’re really worried about”. That’s one of the things I try to focus on with my patients, especially when they seem more concerned than I am about a specific symptom. It’s clear to me that not everyone knows what they’re worried about when they come in, so it often takes some exploring before they figure it out.

  3. I wrote a comment, and it got eaten by the evil Starbucks wireless network.

    I hope that one day (in the very near future) we won’t have to have these kinds of posts on the internet – that stigma against the mentally ill will be eradicated and medical students and physicians in training will have the opportunity to re-evaluate their own paradigms in order to be able to treat all sorts of marginalized patients objectively, and without prejudice.

  4. This. Is. Brilliant. “A secret handshake”. Oh, yes, we definately need something like that. Then maybe my (only “reality”) friend, W, would’nt have had to wait so long to tell me in an e-mail. “Ever since i first saw your arms in CPR class, i have wanted to give you the biggest, hugest hug.” (We took an emt class together). i have tried to follow your rules at my ED visits, usually things were ok, however there was a certian nurse who felt it necessary to comment “If you’re going to keep doing this, you should get yourself a sewing kit”…damn, it was only later i thought i should have asked her, then and there, for a stapler or a suture kit. Then there was the young ED Doc who was so pissed off by my kind that he was silent the entire time he sutured a laceration (kinda long, so it took a while) on my arm…and did a crappy job of it too. Ah well, i guess i deserved it. Sigh.

  5. This is a wonderful post, not only do you explain how to deal with doctors while having a mental illness it is very clear without over simplifying. I too would really like a secret handshake. Hope you have a happy new year. Hannah X

  6. Hi Sara,
    If the Masons can manage to have a secret handshake I think we could do that too. It is a brilliant idea and would make all our lives so much simpler.

    Thanks for the tips. I am saddened that it is the end of 2008 and all doctors have yet to understand that mental illness is an illness. You would think by now such highly educated people would get it. Every Dr. should have to spend 3 or 4 months working in psychiatry before they are declared Drs. Maybe that would help.

    I hope you have a HAPPY NEW YEAR. Your posts are always so compassionate and caring. I hope you are able to save lots of that for yourself this upcoming year too. You deserve it.
    Take care,
    …aqua

  7. Aqua – doctors do have to do about 2 months of psychiatry or more in med school, but unfortunately, the experience often is not very good, and all they come away with is that crazy people are crazy. It isn’t enough to really get to know patients, to see their lives, to care, to see people change or get worse or better. And teaching is mostly focused on identifying acute states: mania, depression, various psychoses, anxiety disorders. Therapy is private, so you never see that, no one sees how a therapy session works because you just can’t bring a student in there, and most of it is done outpatient, while training is in hospitals.

    This isn’t exclusive to psychiatry, either…the oncology rotation is similar – all they show you is the tumor. I think that often, just as doctors see people with a psych diagnosis as consisting only of that diagnosis, they see cancer diagnoses the same way.

  8. I just discovered your blog today from a commenter at Dr Shock blog.

    You have a real and great gift at communicating on many levels. Your writing is nuanced, gentle, ferocious and very beautiful. Quite often it’s profound.

    The way to describe interactions and caring for and about your patients is superb, and it is absolutely not the norm, not mediocre – but very advanced, elegant and expert.

    One little nubbin that I’d like to offer is that in the US there are no nursing standards of practice and care for patients who have mental health problems and diagnoses when they are cared for in non-behavioral health settings. (I discovered this when researching a sentinel problem and performing a root cause analysis).

    We don’t hold nurses (and I would guess physicians, too, but that’s not my profession) accountable to do much more than hotel and basic safety services around mental health needs of patients on medical/surgical/critical care units. Nurses in particular, practice as employees and so do not control their own practice autonomy to any significant extent. It’s a real disservice to nurses and to patients on so many levels. You describe what happens when nurses don’t adequately care for patients in those situations.

    I look forward to reading more of your work, and I hope you will take away that were I your (nursing instructor) evaluating your use of therapeutic communication and establishing therapeutic patient relationships, you’d score off the charts.

    Best-

    Annie

  9. Hi,

    I’m not sure what exactly nursing standards of practice are anyway. Sort of ethical guidelines? Or what? (Never got that MPH)

    And the ER is a jungle, period. I wouldn’t expect nurses there to be particularly sensitive or caring to anyone. Just process and do what needs to be done. That’s the reality.

  10. What an amazingly wonderful post. I agree that we need a secret handshake too. Thank you for your kind, frank and intelligent words– it’s good and strangely comforting to be reminded that there are those among the people charged with our care that understand more than we know.

  11. *bookmarks*

    Thanks for this. x


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