Should I, Or Shouldn’t I?

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In a perfect world, all doctors would know that people with psychiatric issues are regular humans, just like everybody else.  They would not look at our diagnosis, our health history, our med list, and automatically assume that we are drug seekers.  They would not automatically write off our symptoms as being “psychosomatic.”  I use quotes there, because the word “psychosomatic” means that the mind is causing a disorder that is expressed by the body.  I happen to be of the school of medicine that believes that virtually all physical illness is caused, ultimately, by imbalances of body chemistry that are initiated in the brain; therefore, all illnesses are “psychosomatic.”  And guess what, folks: they’re real illnesses.

Unfortunately, most doctors are under the impression that if you have a DSM diagnosis, that automatically puts you in the category of “crock,” which means your symptoms are completely invalidated from moment one.  Oh, by the way, “crock” is medical-ese for “crock of shit.”  Nice, huh?

Let me give you an example.

In 2009, I became very ill with Cytomegalovirus.  My immune system crashed, and all sorts of viruses that had been happily sleeping in my body (like the herpes cold sore virus) elbowed their way out.  The virus infected my small intestine, which caused a malabsorption syndrome.  My body could not absorb nutrients.  I lost 25 pounds, became anemic, and spent half of every day on the toilet while whatever I had eaten the previous day made its way out.

I had no pain, no cramps, no bloating, no urgency.

Those are some of the the symptoms of Irritable Bowel Syndrome.  I didn’t have any of them.

Weight loss and anemia are things that completely rule out IBS; yet every gastroenterologist I saw, as soon as they glanced at my med list, immediately announced that I had IBS.  It didn’t matter to them that I was gaunt as a ghost, barely able to walk to the bus stop near my house.

I don’t mean to downplay the seriousness of IBS, not in the least.  It is a terrible illness, as those of you who suffer from it know all too well.  But after my personal experiences, I began to wonder how many people are labeled with IBS, which is said to be incurable and mostly untreatable, when they in fact have physical illnesses that go untreated because of–you guessed it–stigma.  How many people are walking around with treatable illnesses, like giardia, lactose intolerance (did you know that most of your pills are made with lactose?  It’s what holds the pills together), fructose intolerance (juices and fruits), bacterial overgrowth syndrome…the list goes on.

But I am a pediatrician.  I think like a pediatrician.  I walk and talk like a pediatrician.  And we have a saying among ourselves:  If it walks like a duck, and quacks like a duck, it probably is a duck.

I had malabsorption.  I also had frequent sinus infections.  And I was born with pneumonia, which I have had many times since.

It all adds up to one thing: Cystic Fibrosis.  CF was once thought to occur only in children, and it was lethal.  No one with CF lived past their teenage years.  The combination of malabsorption and lung disease, and the resulting immune deficiencies, lead to their tragic death in childhood.

Nowadays more and more adults are being diagnosed with “mild” forms of CF.  And kids with CF are, thankfully, living well into middle age, thanks to new medications.

So I demanded a sweat chloride test, which is the “gold standard” diagnostic test for CF.  Guess what?  You guessed it: it was positive.

Seems to me that my body was coping pretty well with the genetic illness, till I got sick with the CMV, which destroyed my intestines’ ability to absorb nutrients.  That was the proverbial “straw that broke the camel’s back.”

Luckily, there is medicine for the malabsorption.  Digestive enzymes extracted from pigs’ pancreases (yuck), taken with everything that goes into the mouth (except water), fixed my problem entirely.  I gained the weight back, and the anemia is slowly going away. I poop like a normal human being.

But I had to kick and scream and generally make a pain in the doctor’s ass before she would prescribe the medicine for me.  And I had to tell her that I understood that this was “functional” (medical code word for “not real”) before she would write the script, as if she was placating a petulant child–regardless of the fact that my CF test was positive!

Psychiatric illness triggers a switch in the brains of too many medical personnel that immediately pigeon-holes us into the category of people whose physical complaints are “all in their heads.”  Believe me, I have seen it from both sides of the white coat.

When I was a young doctor just starting out, there was a clinical manual that contained, among other things, a reference for pretty much every lab value there is.  It’s called the Harriet Lane Handbook, and it’s published by that paragon of medical knowledge, Johns Hopkins University.

One of the reference lab values was: Serum Porcelain Level.  The book actually quoted “normal” values for “Serum Porcelain Level.”

People do not have porcelain in their blood.  What did that mean?  It was code for “full of shit.”  In fact, that in itself was a known and accepted acronym: FOS.

Another one, usable in front of patients because no lay person would know what it meant, was “supratentorial.”  Without getting too technical, it means “all in their head.”  Nice, huh?

All of this is leading up to my present dilemma.  I have an appointment with a spine specialist to discuss, well, my spine.  I have arthritis that affects most of my joints, but the one that gives me the most trouble is my spine.  It started in 1987, and has waxed and waned ever since.  I had emergency surgery to remove a smashed disk in my neck in 1987, and spent 1989 in a molded plastic brace that went from my armpits to my groin.  I had to be in it 23 3/4 hours a day, allowing me 15 minutes to shower.  Nice. But not in the least “supratentorial.”

The last two doctors I’ve been to have demanded, without even shaking hands, to know if I was a drug-seeker, despite my very “real” medical history.  I never take narcotics unless I’m truly desperate: they make me sick.

So I’m nervous about this upcoming appointment.  I’m wondering whether I should disclose my Bipolar Disorder.  I’m wondering whether I should even put my psych meds on the med list they’ve sent me to fill out before the appointment.

How relevant is my psychiatric condition, and its accompanying mini-pharmacy, to my Degenerative Joint Disease?  How would it be if I just left that part out?

The fact that I’m even thinking this makes me sick.  The fact that the stigma in the minds of doctors would make me even consider hiding my condition, a whole part of my life, makes me want to puke.

Bipolar Disorder is a very big part of who I am.  Yes, there are very big downsides to it, and anyone who’s read my “About” page, or my post “The End of The End” will know how much I have lost as a result of Bipolar Illness.

On the other hand, the sparkling creativity, the crackling fire that makes me who I am, could not have come about without my Bipolar.  It’s a knife’s edge, and sometimes it makes me sharp, and sometimes I fall and cut myself badly.  But I would not be me without the Dis-Ease.

I’m leaning toward leaving this part of my life out of the Orthopedic Equation.

What do you think?

© Laura P. Schulman, M.D., M.A. and A Canvas Of The Minds 2014. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Laura P. Schulman, M.D., M.A. and A Canvas Of The Minds with appropriate and specific direction to the original content.

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35 thoughts on “Should I, Or Shouldn’t I?

  1. I’m surprised to find the stigma of psychiatric illness is so common in the medical community. You’d think people who’ve studied it wouldn’t be so obtuse about it.

    • Unless they have specialized training, a doctor may or may not have had a whole month of observation on a psychiatric inpatient unit, or outpatient. For the vast majority that was a long time ago. Now we docs are being bombarded with warnings about “drug seekers.” I myself have been told, at my first visit to an orthopedist, “If you’re looking for drugs, you’ve come to the wrong place.” That was a conundrum, because if I stomped out, like I wanted to do, it would have looked like I fit his description, so I had to suck it up and go on with the visit. Ironically, once he saw what was wrong with me (broken bone), he was all too eager to write me a script. I took maybe two of the pills, still have the rest in case of emergency.

  2. I had an experiment with doctor judgement pretty recently…and it really surprised me. I am an attempt survivor and went thru 8 months of ETC for which I received 10 Vicodin a month for side effects. I also have a major depression diag. In March I woke up and couldn’t breathe, had heart palps and couldn’t move…called 911, went to the ER and the first question the doc asked me was ‘what medication are you looking for?’ She kept pressing me about why I came to the ER at 7 am and why I didn’t just slow my breathing and why I didn’t see my GP. She left with a note to take Motrin. I landed in the ER hours later and it turns out I had a severe pinched nerve and compressed disc.

    I don’t think she looked past the overdose part of my background. So now, as soon as I go to a med appt. I say right away ‘this is a psychiatric issue’ or ‘this is not a psych issue’. Sucks we even have to worry about that stuff.

    • Wow….what a horrible experience! You must have been in such agony, and this creep “doctor” totally invalidates you! I’m glad you went back and got properly treated, eventually. I would encourage you to file a complaint with the hospital regarding this awful demonstration of stigma-driven incompetence. Because of her stigma, you were forced to endure hours more pain and anxiety, in addition to the pain of being told your condition wasn’t real, and then having to return to the ER….completely unacceptable! Call the hospital’s Risk Management department and tell them you want to file a complaint. They will provide the means for doing that.

      I had a similar thing happen. I had surgery to remove a smashed disc in my neck, and afterwards a nerve in my arm swelled up…when I called the on-call doctor to ask for a course of steroids to treat the inflammation, he wouldn’t even listen, assumed I wanted narcotics, and after calling me a “drug-seeker,” hung up on me.

  3. Oh, Laura, your post is disturbing on so many levels. We have SO far to go with stigma, even in the medical profession. I say you do what you think will give you the best care. It would be so interesting if you could do an experiment……..go into the doctor, leaving out your Bipolar diagnosis and seeing how that goes. Then go back to the same doctor (with his memory wiped out, of course :)) and tell him you have Bipolar disorder. Then compare how you are treated. Guess that’s not possible…. I wish you all the best and hope this doctor helps you.

    • I have your experiment complete, Janet (sorry to nose in, Laura). The middle of last year I went to the local Urgent Care for an excruciating migraine. They have my history on file, but the doctor never looked at the file, he came at me totally sympathetic and kind and actually let ME tell HIM to give me 2 mg Diluadid and 25 mg promethazine.

      Fast forward a couple months. I come in curled up in tears, and he actually looks at my chart because he thought I was a pregnant lady. After lecturing me (while I’m doubled over) about how I’m on too many drugs and have too many doctors and am switching (my doctor has been my doctor for 18 years and you know what, I need a shrink) he very reluctantly gave me a little promethazine and 2 liters of fluids — which I insisted on because I knew I was totally dehydrated.

      After all of that, when I was not feeling any better (shocker), he told me to go to the local ED. Didn’t even examine me or ask me a question as simple as “Have you hit your head in the last few days?” (He also insisted my pupils were dilated and not reacting, which was due to all my meds, of course! First, they were quite reactive, second, nausea, headache, issues with my pupils, that could easily have been a concussion, among other things.)

      In any case, there’s a fine before and after for you.

      • Thank you for chiming in, Ruby. Perfect example. I have experienced nearly the same scenarios, and have been behind the scenes on plenty that I would not even publish because they are so shockingly offensive. I am embarrassed for my profession, for being so ignorant and without empathy. At the bottom, though, I think the main motivation is fear. We challenge their definition of normalcy and push the limits of their comfortability.

    • Thank you, Janet! Ruby’s unfortunate experience is a bitter pill. Somehow we’re going to have to address this issue of stigma in medical care at a much higher level…NAMI claims to do it, but in my experience all they do is collect your money and publish glossy brochures. We need a Mental Health Consumers’ Union, is what we need.

      • I think NAMI varies a great deal from state to state. My good friend, who has severe bipolar and a few other disorders, and who went through postpartum psychosis after the birth of her child has done a lot of volunteer work for the organization in several different locations, and actually spent time working with one of the highest individuals in the organization, whom she really liked. My friend not only facilitates one of their Peer to Peer support groups, but her parents became involved and facilitate Family to Family support workshops. She has definitely been more impressed with some chapters than others, and I think that a lot depends on the community of consumers they serve as well.

        • I don’t deny that NAMI does a good job at facilitating support groups on a local level. I have not seen them do anything significant in terms of education about mental illness on a national level, like TV commercials, public forums, sponsoring speakers who live with mental illness, and other stigma-busting campaigns. They are in the perfect position to do those things, and have the money to sponsor them. Think about what has been done for PTSD in the past few years. It has been largely destigmatized. Granted, that’s been mostly because of the Veterans’ Association, but it’s a good model. Billboards, social media, television, all the tools for getting the word out. And you’d think that in this time of renewed demonization of people with mental illness, due to the recent mass shootings, that NAMI would come out guns a-blazing, but no. And in fact, NAMI Ohio even supported a bill for forced hospitalization and forced medication, at the whim of the state! I don’t call that advocacy. Maybe it’s time to form a Mental Health Care Consumers’ Union.

    • Excellent concern. I recommend using a drug interaction checker such as this one. There are many others out there. I actually recommend doing that with all the meds you already take, as well as with any new med or even herbs that you might take. Never assume that your health care provider is a total authority in that respect; and although the pharmacist is supposed to be double-checking, that doesn’t always happen either. We have to be our own best advocate.

  4. I vote for leaving it out. I work in the medical profession also and concur with your description of what happens to patients with a mental health diagnosis. Organizations tout Electronic Medical Records as a patient care tool. Instead they are used to decide what is wrong with a patient before they are even seen. As I’m sure you know, there are good docs out there. But the majority of docs out there are clueless about mental health. In my experience, we are all “mentally ill” in that we all fall outside some predetermined norm established to suit the Psychiatry and pharmaceutical industries. Best of luck to you.

  5. Question: do any of your psych dx have any influence on or symptoms that imitate, compound, hide, etc. your physical dx and sx?

    if no to the above, then do any of your psych meds or their side effects, have any influence on or whatever else, your symptoms from your physical dx med side effects?

    if no to both of the above, then i see no reason to include them. however, if either the illnesses, symptoms of them, meds, or side effects of them, in any way influence your physical dx or physical meds, then you must decide at what point do they have enough effect to be given to this doc.

    ex of mental health dx with symptoms causing physical illness—i take lithium and developed renal tubular acidosis and have to see a nephro and take nephro meds. so, this is ex where you would need to disclose.

    im sure you’ll get it right.

    • Right. I see your point exactly. And this is the heart of the Bio-Psycho-Social model of health care that I myself practice. But unfortunately I am in the minority. Your questions are spot-on, but in my experience few health professionals are tuned-in enough to understand that one’s stress level can certainly aggravate one’s pain from a pinched nerve, but that that doesn’t mean one is cruising for drugs. And certainly, if you have an illness that could potentially be aggravated by a new medicine or treatment, then you really have no choice but to disclose.

      • well, i know it doesn’t really make an answer, but, there really isn’t an answer. you just basically have to go on a visit to visit basis or doc to do, or whatever…and make the decision at that moment on what’s is best for you.

        i struggle with this also, and there is never a right answer to this dilemma. good luck. you’ll do what’s right for you, i’m sure.

  6. I’m so glad you’ve raised this topic Laura, as it continues to be a problem for me. I think of the personal stigma I come across 99 per cent of it comes from health professionals. I’m sure many of us could repeat similar stories to yours although you definitely have an advantage with your medical knowledge. Not that it makes if any less frustrating! It is one of the things that frustrates me is that I am unable to get information from my doctor because he puts my questions down to my MH diagnosis and denies knowledge of whatever I am talking about I feel like picking him up and shaking him at times. As for getting medication, well that is still a battle field.

    One of the issues I have is that because I am taking lithium it is has to be known if other medications are being considered. Even when they know, I still have problems getting on meds that are ok for me, but then that is another point. My point is that I simply can’t get past my MH history for the sake of getting treated for physical illness. Oh, and to add to that I have a thing called “Lithium-induced Graves’ Disease. A physical illness which includes my MH history in it’s name. I can’t win. As side issue, the doctors simply can’t understand that I don’t take my Lithium for Bipolar. They just assume I have Bipolar and treat me as if I am in denial of my own reality. ;-).

    • Sorry you face the same issues in your part of the world, too. Sorry you’re having SE’s from your Lithium. It’s a wonderful medicine, but a two-headed sword sometimes. I really would like to round up all the health professionals and give them all psychological testing, and see how many of them are hiding mental illness under their white coats! One in four, all of you holier-than-thou health professionals!

  7. I definitely wouldn’t disclose. I worry about this sort of issue plenty too, to the point of writing out counterpoints to potential questions a new doctor could have. You certainly have more than enough medical savvy to determine whether they need to know, and can check for drug interactions with simple online tools like Medscape so…yeah. I’d avoid a world of trouble and since them knowing would pose obstacles toward them taking you seriously.

    • Wow. You write them out. That’s a good idea, to anticipate. Oh, I hate to be as paranoid about this as I am! I guess after enough bad experiences, one has to develop coping strategies. I don’t write them down, but I do rehearse in my head how I’m going to deal with certain delicate questions, like why I’m on Medicare at my age–I’m totally disabled, is why, but I’m not going to go there with them on the first visit. I’m going to let them get to know me–I’m not a drug seeker, I’m not a crank, if something hurts it’s because it’s injured in some way. Then, if it comes up, I’ll disclose–like if I need surgery and they REALLY need to know my med list.

  8. I must be oblivious to medical bias against those with bipolar disorder. Either that, or since I have type II, I’ve had an easier time of it. I am shocked that medical personnel have treated you so poorly, especially given your medical education. For shame. I imagine that the bias varies geographically. I shouldn’t take the respect my medical providers give me for granted. Please be open and assertive with your orthopedist. By doing so, you both overcome stigma against your mental illness and give your ortho the information needed to properly prescribe meds (which you already know).

    • I’m really happy that you’ve received good unbiased care. May I ask where you live? I’m wondering whether there are regional differences that might account for the level of tolerance and even normalization of mental illness by the medical profession.

      • I live in Mission Viejo, CA in southern Orange County. Many of our pdocs were educated at UC Irvine and UCLA. As you may know the greater LA basin is blessed with many medical schools. When hospitalized, I went to South Coast Regional in Laguna Beach which was affiliated with Seventh Day Adventists. Unfortunately, the hospital was sold and the new psych hospital isn’t as excellent. Loma Linda Medical School is an hour east and run by the Seventh Day Adventists.

  9. I’ve run up against similar issues–I have ulcerative colitis and have been in my local ER 5 or 6 times in the last year. I can see a huge difference between how I’m treated when they haven’t read my medical history (i.e., the parts about psych diagnoses and meds) and when they have. I’ve been accused of drug seeking when all I was asking for was a prescription for steroids to last me until my next appointment with my gastroenterologist. I mean, what kind of drug seeker asks for prednisone or budesonide?

    I even had to change primary care docs because the old one refused to treat my asthma, despite the fact that I have a long and well-documented history of it going back to early childhood AND the fact that I’m on meds that can cause (albeit rarely) pulmonary toxicity. Because I wasn’t having an attack during the 10 minutes I was with her, she told me it was “just anxiety” and told me to “just calm down and breathe like a normal person.” I asked for a maintenance inhaler, and she told me I should talk to my psychiatrist. I found a new PCP, who I really like. He prescribed me a maintenance inhaler and, surprise surprise, I stopped having asthma attacks. Imagine that. He’s never brought up my mental illness or psych meds except to ask if I was happy with my psychiatrist. My awesome gastroenterologist has also never discriminated against me for having psych issues, which I really appreciate. I know GI disorders are often written off as anxiety or otherwise psychosomatic.

    I’ve debated leaving off my mental illness and psych meds when I fill out medical histories, but I’ve never done it because I’m afraid of having some sort of drug interaction if the doctor doesn’t know what I’m on. As a doctor, you’d probably know how to avoid that, though. And now, my local ER has all that on file for me anyway…I wish there were a way to erase it, because I’m likely to end up in the ER frequently.

    • Wow. That’s awful, that the ER docs would ever DREAM of denying you your UC meds. Oh right, you’re going to abuse your budesonide enema, right? You’re probably going to mainline it! Jeez. I’m surprised, though, actually, because UC is a “real disease” with actual physical lesions that can be seen in various ways. And your PCP telling you to “breathe like a normal person”–I think that person needs to have a good asthma attack so she can get a little perspective. But since compassion seems to be fading into the distance along with the corded telephone, I suppose I should not be surprised. I’d like to give whatever doc who denies you your meds a case of UC him or herself, and see how they like it! One of my acupuncture patients with UC had to change gastro docs 8 times before he found one with an ounce of compassion! I’m really glad you have a good GI doc. Maybe s/he could give you a letter to show the ER personnel. I’m serious. It might save you a lot of grief.

      • I nearly died before I was diagnosed with UC because I was at a psych unit when I first got sick. The internist there just kept telling me to drink more Gatorade, but finally the charge nurse went over her head and sent me to the ER. At the ER, despite an extremely high CRP, a bad-looking CT, a fever of 102, and a blood pressure of 50/30, the intern was convinced I’d tried to kill myself. She kept interrogating me about what I’d overdosed on. She also wanted “who put what where” details of my sexual abuse history, which had no bearing on my medical situation. Then she had the nerve to ask me if I had any stress in my life!

        I think inflicting UC on stupid ER docs would be a fitting punishment. I’ve brought them files from all my colonoscopies, scans, every blood test since my diagnosis, everything…but they still act like I’m drug seeking. I mean, yeah, I ask for morphine, but that’s because I’m in EXCRUCIATING PAIN.

        • Yikes, that’s such a horror story! The worst I’ve heard yet. It makes me want to write it up as a case study to publish in a medical journal. I don’t know if the journals will still consider my submissions, given my own situation, but there’s a column called “A Piece Of My Mind” in a popular journal that does publish “first-person” experience and commentary pieces. Would you be interested in collaborating with me on a submission? Write to me at dinaleah at hotmail dot com and let me know, please.

  10. I don’t know if you’ve been to your appointment yet, but could you go in your professional/working outfit, so that the doctor you’re seeing can see that you too are a medic? The danger of not listing all your medications is (as I’m sure you’re well aware) if they then give you something which will affect something you’re already taking. (One example springs to mind, my grandma was given a new med to take alongside all her others at the end of December, when I saw her last in January, she was seriously having problems and had called her surgery for a GP to visit her, and the chap who visited her flat suggested she stop taking the new drug, as it was doing exactly the same thing as something she was already taking – which the doctor who prescribed it to her should have known at the time of prescribing.)

    • Thank you for your excellent ideas and wisdom! I only practice on a very limited basis, for friends I’ve known for years, whom I know and trust. Although I still carry full and active licenses to practice medicine in five states, my condition prevents me from having a full practice because I never know when some form of madness or other will consume me; therefore I limit my practice to a very few trusted friends who understand if I have to cancel/reschedule at the last minute.

      I have found that revealing my occupation to doctors who are treating me is a double edged sword: on one hand, some of them respect me and give my word more credence, and on the other hand, some react with defensiveness and actually give me worse care than if I were a citizen off the street. So I always have to be on guard at the first encounter.

      Regarding medications and possible drug interactions, I make sure to consult my psychiatrist before taking any drug prescribed by another doctor, whether it be an internist, gynecologist, or pain specialist. Sure I can and do look it up myself, but in general I frown upon self-treatment because I know that when I’m sick my judgement goes into the toilet, so I have a network of other docs who treat me, to whom I can turn when I have need of them. I don’t just make random decisions based on my own clinical judgement, which I know is impaired when I fall sick. I probably should have discussed this in my post, but I think I was in too much pain at the time I wrote it to have clearer judgement. I’m hoping people will read this comment so they can get a clearer picture of my modus operandi.

      Thanks again for your excellent comment and questions!

      Be well,

      Doctor Laura, as my patients like to call me

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