OCD, Medical Professionals, and Stigma

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The Internet is amazing. Those with OCD and other brain disorders, who previously might have felt so alone, now can connect with others who often easily relate to their struggles. People share their highs and lows, successful and unsuccessful treatment paths, and all kinds of anecdotes. I’ve learned a lot from reading others’ blogs.

A couple of months ago a blogger, who I follow and consider reputable, wrote about her brain disorder and the stigma she has encountered. A common topic, right? Well, usually. What surprised me (though maybe it’s not so surprising to others?) is that the stigma she experienced came from a health care provider. Once the physician (not her regular doctor) saw the medications listed on her records, he decided that her physical complaints were “all in her head.”

An isolated incident? It doesn’t appear so. Since reading that post, I’ve read similar accounts on other blogs, and have even received an email from someone whose visit to the emergency room (for a physical illness) ended with the realization that those with known mental health issues were assigned a different color hospital gown to distinguish them from “normal” patients.

There has been a lot of discussion on these blogs as to how this discrimination should be handled, from switching health care providers, to not seeking help when needed, to filing a complaint (which just might confirm your “craziness”), to lying about what medications you are taking.

This news has been a real eye-opener for me. In my own experience visiting healthcare providers with my son Dan, I never witnessed blatant discrimination. Of course, nobody knows what anyone else is really thinking, but I never felt that any comments made, or actions taken, were questionable. Sure, I have my share of complaints about how Dan was treated, but they are mostly related to what I feel was mistreatment of his OCD specifically, and not due to the stigma of mental illness.

Obviously this information is disturbing on so many levels. I hate that those who need help might not seek it, or might not be treated well. And how unfortunate it is that there are so many dedicated and caring professionals out there who now might not be trusted, or even approached, by people who have had these experiences.

Perhaps what’s most upsetting to me is that I’ve always thought that fighting stigma began with education and awareness. But these health care professionals are supposedly already educated, and already aware, of what various brain disorders entail.

So what do we do now?


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19 Responses to OCD, Medical Professionals, and Stigma

  1. Ruby Tuesday says:

    What you say about not running into this with your son actually makes a lot of sense to me, Janet, fair, right, whatever or otherwise. I mean, OCD, unlike something such as bipolar or depression, isn’t highly comorbid with addiction.

    I wrote in the comments of a post of my experience with a doctor at Urgent Care — he was actually a PA (Physician’s Assistant, and yes, I think this time that mattered). First time I saw him he examined me for the reason I was there, then let ME tell HIM the amount of not one, but two intramuscular injections he was to give me. That’s kind of a pretty big deal.

    The second time I was “a psych patient”. And I also think the fact he had been so cavalier about letting me “prescribe” for myself on the visit previous played into it — despite the fact that at that first visit I could have asked for a much higher dosage and probably gotten it.

    Then again I do have to say I’ve run into marvelous medical professionals, and as much as I hate being generalized myself or doing to anyone else, they’re usually NPs, and they’re usually female. With them I have been able to disclose all disorders, and we’ve talked about and medicated for anxiety just as sure as if it were a reaction to a bee sting.

    I know the medical profession, it won’t get all the way there in my lifetime, unfortunately. I do have a wonderful primary doc who will send me to specialists who aren’t going to be ignorant about mental disorders. As far as emergencies, all the hospitals around here have a lot on me in their systems, so I figure better I tell them than try to cover anything up. Thank God so far I haven’t been denied pain meds when in need.

    • Thanks for sharing your experiences, Ruby, and I’m glad, at least, that you’ve been able to get the meds you’ve needed. I guess there are good and bad professionals in any field, and medicine is no exception, though for some reason, I think it should be!

  2. Em Jack says:

    Hi Janet –

    I am pleased that you bring this up. My dd has been living with severe OCD & I bi polar 2.

    Each of us have been hospitalized more than once. Each time either of us has had to go to the ER we were given different color scrubs than the other patients.

    I believe it is important that the language used for brain disorders be chosen carefully. This can start with us. For example – when I have gone through the psych eval then the doctor/psycihiatrist/ARNP/PA asks do you have any physical or sometimes medical issues at this time. I have respectfully stated – in addition to my physical or medical (which ever word was used) concerns pertaing to my brain I also broke my toe a week ago. Each time I have taken this tact
    I have gotten the medical professional’s attention. Each time the point was taken.

    I feel the sooner we achieve the way brain disorders are considered in the medical forum & the medical insurance forum that our body is one physical entity. Our brains are not to be considered a medical condition outside of or in addition to other medical concerns of our body.

    The medical insurance industry is greatly to blame when it comes to perpetuating the medical treatment determination based on either from above or below the head.

    I realize I’m preaching to the choir but … got to start somewhere & I can’t think of a better place then here – on Janet Singer’s blog!

    Thank you so much –


    • Thank YOU, Em, for sharing, and I think you are absolutely on the right track: respectfully pointing out to medical professionals that the brain shouldn’t be separated out from the rest of the body! I totally agree with you about all the problems with medical insurance also…my family has experienced this as well. Sigh, we still have so far to go!

  3. Very important and complicated topic. I have dealt with this on two levels. First was/is in trying to get my mother help for his bipolar/depression and her therapist would NEVER believe anything I told him because after all I was only a teenager and he was the Psychiatrist who was trained how to spot certain behaviors. It took her second suicide attempt and first real hospitalization for anyone to listen to me and that was only because I brought my Aunt with me to back me up. I was tired of telling the hurtful truth and “spilling” secrets only to get HELL for it later because nothing was done. Finally her alcoholism and bipolar was dealt with all cards on the table.

    In my own experiences once I started taking medication for OCD and I tell them what I’m on, its always oh what are you depressed or have anxiety issues maybe your symptoms are from that blah blah blah.
    It is a circle of no win and the teaching of what a mental illness is and how to deal with patients needs to be changed in medical schools.

    • Thanks so much for sharing. So much for a teenager to have to handle! While there are good providers out there, there are also many who, as you say, just don’t take seriously what family members have to say (teenagers or adults). I’m sorry you had to go through all that with your mom.
      I’m not familiar with the current medical school curriculum, but yes, more education in this area is obviously sorely needed!

  4. It is sad that stigma can come from those that you expect to be understanding. I remember times when I’ve been embarrassed to tell new docs/nurses what medications I’m on. When I list those antidepressants or anti-anxiety meds, I feel self-conscious. But you know where I feel really self-conscious? At the pharmacy. Just last week, I called in a refill on my anti-anxiety medication with the pharmacy auto-phone system. When I arrived to pick it up, I was told that I was trying to get it too early. That was fine. I still had some left. I was just trying to get ahead of the game. But the pharmacist said the words “controlled medication” about three times in explaining to me why I couldn’t get it refilled. This was out loud in front of everyone working in the pharmacy and all the customers around me. A simple “We can’t fill a medication like that early like we can other ones” would have sufficed.

    • Ugh, Tina, that pharmacist has no tact, bedside manner, common courtesy, or whatever you want to call it. Doesn’t he/she realize choosing those words can make someone feel guilty of a crime, when all you want to do is refill your prescribed meds? I’m sorry you had that experience.

  5. 71 & Sunny says:

    Wow – a DIFFERENT colored gown??!! That’s inexcusable. Luckily I haven’t had too much trouble with doctors myself, but I have heard some stories. I agree, it’s shocking that some people who are supposed to be educated can still be perpetrators of ignorance and stigma. I think the only thing we can do is talk, talk, and talk some more.

  6. I am going to take a devil’s advocate on the gown issue. I don’t like being discriminated against, that said, if the gown were used to differentiate and raise awareness to the staff of what they might encounter, wouldn’t this help? I’m assuming they are not using this as a scarlet letter or simply to dismiss the concerns of the patient. Some people haven’t learned coping skills to some of their triggers. Unfortunately someone who has PTSD, for example, may be triggered at the sight of needles (I’m speculating) that may lead to an improper course of action on the part of hospital staff if they didn’t know they had a mental condition. What do you think?

    • I appreciate your comment, and understand what you are saying. My guess is that the points you bring up came into play when the decision to use different gowns was made. For me, personally, I find it difficult to see it as anything but blatant discrimination. All kinds of people with all kinds of problems come through hospital emergency rooms. What about someone who is drunk, or perhaps a felon, gang member, or a million other possibilities? Should they have different colored gowns because they might be volatile? Also, there is quite a bit of research that suggests those with brain disorders are not any more violent than those without. I don’t believe they should be singled out. Maybe other readers feel differently?

      • The gang colored gowns would make things rather funny. I picture two opposing gangs in wheelchairs going past each other and using the IV Buddy to use in a “drive by.” There’s a joke in there somewhere, I know it. I wholeheartedly agree with you. You go to the hospital because something is wrong. Being discriminated against solely based on a diagnosis is not cool. I didn’t mean to imply that I endorsed the idea just that there could have been a utility to it.

      • I’m glad you have a sense of humor……we do need to be able to laugh at how ludicrous things can get!

    • C says:

      Holy moly, a DIFFERENT COLORED GOWN? Are you kidding me??! That makes me so mad.

      @thescrupulousatheist: physicians, no matter what their speciality, start encountering different rotations and types of disorders (CICU, ER, psych) in medical school, years and years before they actually become M.D.s out of residency. To distinguish background histories on patients, all they really need is to make a note of it…just like you would if someone had diabetes. Putting a person who has OCD in a different color gown to signal that they are different implies that there is some danger or “look out” mentality that will not suffice with a normal background evaluation. I respect your opinion, but truly hope you don’t feel this way after giving it some thought.

      • I didn’t agree with the idea from the outset. I just thought maybe the hospital staff was trying to implement the different gown coloring with good intentions. I was trying to be “generous” to them, giving them the benefit of doubt.

      • Thanks for your thoughts, C, and I agree with you….it is upsetting that this practice was even allowed to be put into place.

  7. That’s strange and a bit alarming. As a sufferer of strong anxiety, I find it difficult to convey the feelings to others, and I can only imagine having your inhibitions dismissed would make the whole thought process a lot harder. What if sufferers started blaming themselves? Bit concerning. Thanks for sharing.

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