Breaking The Silence of Stigma: Laura P. Schulman

alien woman headThis Wednesday’s Breaking The Silence of Stigma interviewee is….me!  So, without further ado, let’s jump right into the shark pool!

BSS: How long have you known that you are living with a mental illness?

LPS: When I was putting myself through a very expensive college, scrambling for every dime I could earn, I saw an ad in the campus newspaper recruiting paid volunteers for a pharmaceutical study, for some kind of psychoactive drug.  Get paid to take drugs?   Oh boy!  Pennies from heaven!  So I applied.

I had to take a whole day’s worth of psychological screening tests to determine if I was suitable for the study.  I’ve always been good at tests!  I aced ‘em all!  Or so I thought.

The following evening I got a call from somebody in the psychology department.  He told me that the tests indicated that I was suffering from Major Depressive Disorder, and he ordered me to appear at Student Mental Health the following day.  And, oh my, I was disappointed to hear that I would not be accepted for the drug study.  Rats.

I couldn’t really figure out what all the fuss was: Major Depressive Disorder?  Hell, I didn’t feel any different than I always felt.  I mean, I’ve got an artistic soul, and those are always tormented, aren’t they?  If I didn’t feel intensely sad and/or elated all the time, how could I make my art, write my poetry, go without sleep for virtually days at a time….certainly there had to be some mistake.

But I showed up at Student Mental Health at the appointed hour.  A nice poufy lady welcomed me into her office and sat down on the other side of the desk, gesturing me into the chair on my side.  She perused a chart.  It was my chart.  This is significant, because I had never had a chart before.

She looked up at me and smiled.  She looked down at my chart and frowned.

“It says here that you’re depressed.  My goodness, you’re a straight-A student.  You have a good job in a lab.  You’re good looking.”

She looked up at me again and smiled again.

“So why are you depressed?”

I got up, thanked the nice lady, and walked out.

 BSS: Can you share with us your diagnosis/diagnoses?  When were you diagnosed with these?  How were they diagnosed?  Did you have any special testing?

LPS: I have Bipolar Disorder, Post Traumatic Stress Disorder, Dysthymia, and a touch of OCD.  And I’m an Aspie, as in Asperger Syndrome.  In 1996, I had a battery of tests at the University of Utah in Salt Lake City.  They totally missed the Bipolar and came up with Major Depressive Disorder, probably because I still didn’t think any of the hypomanic things I was doing were abnormal.  In 2005 I had the tests repeated at the University of Washington in Seattle, and they nailed the BP, the PTSD, the Dysthymia, and told me I scored pretty high on the OCD scale.  The Aspie-ness was diagnosed collaboratively with my Ph.D. psychologist, along with some testing.

BSS: Was your illness diagnosed correctly the first time, or did it take time before the right diagnosis was arrived at?  Do you feel that you do indeed have the correct diagnosis now?

LPS: As I said above, the diagnostic process was pretty choppy, until I arrived at the University of Washington Mood Disorders Center, and got what I consider to be a very comprehensive and correct work-up.  I feel confident that my diagnoses are definitive and correct.  This has helped immensely.

BSS: Have you ever been hospitalized due to your illness?  How many times?  Do you think it helped?

LPS: I have been hospitalized twice.  The first time was because I was off meds for fear of being “discovered” by my hospital administrator.  I know, right?  The second was because of wrong medication from a terrible psychiatrist, combined with an over-the-top relationship with another poorly medicated Bipolar.  They definitely helped, because they kept me away from lethal things long enough for my suicidality to blow over.  The second hospitalization was great in another way.  My then-psychiatrist, who was terrible, was on vacation, and my current shrink-o-matic, who is wonderful, was covering for her.  I loved him immediately and begged him to let me be his patient.  That was in 2002.  He’s still my shrink-o.

BSS: Are you on medications for your illness?  Do they help?  What about side effects?

LPS: Oh yes. I’m currently on six different medications.  Yes, they certainly help.  My symptoms are, thank God, mostly under control.  I think.  Side effects….lots.  The worst is from the Lithium, which causes me balance problems (I took a bad fall just a couple of days ago, got a nice concussion), and a tremor that is sometimes so bad that I can’t type!  My handwriting has become deplorable due to the tremor, too, especially my Hebrew!

BSS: Have you ever had ECT (Electroconvulsive therapy)?

LPS: No. I have had nearly 100 rTMS (repetitive transcranial magnetic stimulation) treatments, which literally saved my life. I have had lasting (and I hope, permanent) positive results.

BSS: What other things do you do to help with your illness?  Do you go to individual therapy?

LPS: I have a really wonderful therapist whom I have seen on and off for fourteen years.  She really hits me where I live, and, in a compassionate way, kicks my butt regularly.  In addition, I’m a compulsive blogger and am blessed to have an ever-expanding group of wonderful fellow Mental Illness bloggers, who are a huge support to me.  Thank you, Mental Bloggies!  I find that being a Mental Health advocate gives me direction and a great deal of satisfaction.  I also have a Psychiatric Service Dog, who helps me in many ways.  She helps me to stay grounded, on task, provides structure to my otherwise fairly aimless life, and she is invaluable when I have a PTSD episode.  If I dissociate she licks me till I come back.  And if I am having a flashback that someone is in the room, all I have to do is look at her, because if someone was really trying to enter my house she would go off like a barking bomb.  So if she’s quiet, I know that I can be sure it’s “just” a flashback and will go away eventually.

BSS: How has your illness impacted your life (jobs, education, relationships, children, alcohol, drug abuse….._)

LPS: Ugh.  Can’t you ask me something else?  Damn me.  OK, here’s your answer:  Yes.  Everything.  I have never held a job for more than two years, because I eventually get manic and fired, or depressed and fired….Now I’ve been certified by a Federal judge to be 100% disabled.  That has taken some getting used to, and I still get weepy when I think about my lost dreams.  I was born to be a doctor, fought through thick and thin to be one, was a really good one, and now allthat is gone…it’s rough.

Education has not been a problem because I am an Aspie and I get straight A’s.

My relationships have been very typically Bipolar:  elation, crash, elation, crash…and then my paranoia sets in, and I’m out of there.  I recently took a seven-year break from relationships, consciously.  Then I opened myself to someone who showed up in my life, and….turned out to be waaaaaay crazier than I am, so….I’m really happy with my life as a single person, and I don’t really trust myself with relationships.  So I might just stay single, except for my dog!

Alcohol—I have tried and tried to become an alcoholic, but it never took.  I’m only half kidding about that.  I hung out with alcoholics much of my life, and drank right along with them, but in reality I can’t handle more than half a beer, so I got disqualified.  Drugs, now, that’s something different.  I did a lot of psychedelics when I was young.  And I smoked a lot of pot.  But thank goodness I never took pills (other than acid or mescaline LOL), and I never shot up.  I did have a cocaine addiction though, which lasted for years.  Cocaine cured my depression, until it wore off and the crash was terrible.  I’ve been clean from that for over 30 years.

BSS: Have you ever felt discriminated against because of your illness, or had to deal with disparaging comments, denied a job or other opportunities?

LPS: Yes, yes, and yes.  As a doctor, having a mental illness is tricky business.  First of all, there’s the terrible schedule: being on-call overnight two or three times a week, which is horrible for stability in general and for medication schedule in particular.  Secondly, if one discloses one’s mental illness, one gets one’s license limited and one must have a supervisor, even if one is a senior physician who has never had a mishap of any kind in terms of patient care, clinical judgment, or even paperwork.  It’s humiliating.  I tried to go back into medicine after taking a break to get stable, and the licensing system made me go to a rehab program—even though I am not a drug addict (they never knew about the long-ago cocaine), because they lump mental illness in with addiction in what they call “behavioral medicine.”  They made me show up for a drug test once a week.  I was to do that for a year, before they would even give me a supervised position.  I was so humiliated that I gave it up and went back to my disability status.

In addition, one’s colleagues do not like to hear about one’s illness.  They tend to do things like turn around and walk away if one shares one’s mood or diagnosis.  So one learns to suffer in silence.

BSS: If you could give advice to someone else struggling with mental illness, what would it be?

LPS: Get the best psychiatrist and psychologist you possibly can, and keep them.  Do what they say, and if something doesn’t add up and you feel uncomfortable with their assessment or treatment, say so.  And if they get haughty about it, fire them and find a better one.  Your life is precious.

Find a genuine support network, in whatever way speaks to you.  I, for instance, relate better online, because face-to-face human contact makes my teeth itch (Aspie).  Others find great satisfaction and validation in volunteering.  Seek out a peer group.  Loneliness kills.  Get an emotional support animal, or a Psychiatric Service Dog if you need one.  If you are in a long-term relationship or marriage, and if you have children, be sure to keep everybody in the loop.  Don’t keep your illness a secret.  Secrets kill.  Open and honest relationships, including couples and family counseling if needed, are life-saving.  And don’t forget the kids!  They need help dealing with their feelings too.  My own experience has taught me that it’s tough being the child of a mentally ill person.  Get the kid(s) their own counselor.  It’s a great investment in your children’s future.

And when things get really dark and scary…..get help!  Reach out!  Don’t be embarrassed!  Get help!

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15 Comments

  1. Thank you for being so open with your answers. I do not think many people realize that so many patients are misdiagnosed for months or even years!

    Reply
    • Thank you! Yes, I think it’s the rule rather than the exception. Not all of it is the fault of the docs. It’s often hard to see the forest for the trees, and things do tend to develop with time rather than presenting all at once. Sometimes things are obvious, and sometimes they’re elusive. But the outcome is the same: we often don’t get identified and treated int time ways. And then there’s the fear of being stigmatized, which I think keeps many people from seeking diagnosis and treatment at all. A big problem, especially for illnesses that often have a high mortality rate.

      Reply
  2. manicmedic

     /  August 21, 2013

    Great post, I don’t know if you received the reply to the comment you left on my blog post but Id be honored to participate in your next one. You can email me at themanicmedic@gmail.com.

    Reply
  3. I see so many parallels with my own story. So, Asperger’s and straight As, eh?

    Reply
    • Uhhhhhhh…….hm…….yeah?

      Reply
      • LOL

        Well, I always got straight As as well. Which was odd, considering I have AD[H]D. Admittedly, I don’t know much about Aspergers (not more than your average Jane, in any case) and I don’t think I have it but I didn’t know people with Aspergers got good marks.

        Reply
        • If your I.Q. is 150 or higher, are as many Asbergerians, your grades tend to be pretty good if you can manage to work out a system of doing what they want you to do while being crashingly bored, unless, for instance, you are playing games of checkers/chess/other much more sophisticated things they have today, in your head. I used to write books in my head. It helped a lot. Every once in a while one of them would catch on to me, but that could be good if it was a good one, like my Latin teacher. He was REAL.

          Reply
  4. Thanks for sharing your story. There is a lot of wisdom in your words. 🙂
    I agree that many are misdiagnosed. I was. I also had situational depression that (duh) fixed itself when I got rid of the ‘situation’. But no one saw my bipolar sides, as I have very long cycles. Ice that with OCD and we have a party!

    Reply
    • Yeah, hmmm, long cycles can be tough to nail down. Sometimes all one sees is the depression part, and the BP part only raises its head after using antidepressants, which can trigger a manic/hypomanic episode. I hope you’re feeling better though! At least your OCD doesn’t seem to be the kind that gets triggered by stuff outdoors…?

      Reply
      • That’s exactly what happened, took Paxil & got seriously manic. =-( Uuuugly times. Although, I kinda like my OCD, yes I said that. It gives me focus in what I feel is a messed-up world sometimes. It doesn’t effect my outdoor activities, but being in crowds sets off panic attacks sometimes. But, when I know I’m going someplace like an airport, I take a tranxene. Can’t afford to be flipping out in an airport!! Ha, that would sux!

        Reply
  5. I love how you ended this.Reach out! Don’t be embarrassed! Get help!

    Reply
    • Thank you! It’s hard for people to reach out when their brains feel terrible and all they want to do is stay in bed under the covers–or worse. Thanks for reading!

      Reply
  6. dear Laura
    how to recognize myself in what you write ….
    I was 46 when I knew that I had Parkinson’s. Now I have 54 years and some days I do not know how I pretend to be healthy.
    I have to thank my 3 children, now adults, I have always been their neighbors and they let me have endured in those terrible moments of depression.

    a hug

    elena from Italy

    Reply
    • That’s wonderful that your kids are close to you, both physically and emotionally. I’m sorry that you have been afflicted with Parkinson’s! That must be a hard one to bear. Hang in there, reach out when times get rough. Be good to yourself. Is the health care system in Italy in good shape?

      Reply

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