I’m Not Ashamed

This morning I woke up to find my #imnotashamed tweet in the Huffington Post.

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With that tweet I declared that I’m not ashamed of my mental health diagnoses.

In these past weeks, I’ve completely opened up about the mental and physical illnesses I live with everyday. And it’s been rather freeing.

A few years ago I did an interview I heard about through Help a Reporter Out. I was under the impression that the article would be about alternative career paths law school grads were taking that weren’t the traditional firm or criminal justice routes many take. I spoke to the reporter about my passion for health policy and how that meant I made very little money (never above 200% of the federal poverty limit at that point).

When the article came out, I was certainly surprised at the headline.

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I wrote my friend “Oh the roads these stories take me down. Guess I won’t be shy about being poor anymore.”

For a while that was the top hit if you googled my name.

It also happened to be a time when I was trying to establish myself with my own law practice. I was running the health tech group in Austin, making powerful connections in the community and in health IT.  I was still a fairly inexperienced blogger, trying to take myself seriously.  I didn’t exactly want to be seen as the poor lawyer (perhaps impling that I was a failure).

But I decided to own it.  I told people I met while networking to google my name and see what came up.  I figured it was better to come straight out with it because my story was already out there.

I remember being told that some made the comments behind my back asking “Is she proud of this?”

While I didn’t really want my poverty to necessarily be my identity. I decided, yes, I was proud.

Not proud that I was on food stamps but proud that I was surviving and that I knew a part of life most will never experience. That these experiences will help me be a better advocate.

And it was freeing. I no longer had to hide.

No one should have to hide.

But I was still hiding a lot. What wasn’t captured in that headline were the reasons I struggled so much professionally. It wasn’t simply because I took a different path, though that is part of it. I was struggling because I was losing jobs when my mental and physical health kept getting in the way.

Besides the discrimination faced when employers found out about my mental health struggles that led to my being fired (one job told me it was because I couldn’t write, analyze, or interview – certainly not related to my mental health diagnoses or the fact Is just spent time in a psych ward 10 days earlier), having so many illnesses in themselves make it hard to keep a job. While I’ve never missed a deadline and I’ve found myself at times working from the hospital or while in excrutiating pain in bed, it’s hard to keep up with so many obstacles. One day I’m late for the bus because my blood sugar drops. The next day I may not be able to get out of bed because the suicidal ideation is consuming me. A few days endometriosis may have me writhing on my couch, wishing I could cut my uterus out. Another day I make it to work but have a panic attack. And maybe another day I’ll have an accidental exposure to gluten setting off the autoimmune reaction that is celiac disease (imagine the worst food poisoning you’ve ever had times 100). Then trying to find accommodations in a special chair because of the chronic pain issues  And so on. (Side note: anyone with physical or mental health issues should visit AskJAN.org for information on how to protect yourself from discrimination and ask for reasonable accommodations).

I wasn’t able at the time the Business Insider article came out to speak openly about my mental health – worrying about how I’d be perceived professionally, about discrimination, and about protecting loved ones. Now I can speak without reserve.  As I said in previous posts, I have nothing to lose, no ego or dignity to guard.

And honestly, in opening up, others give me the honour of sharing their stories. While I didn’t talk publically about my mental health, I did often share it in smaller settings. With a friend over dinner, with my design team at IDEO as part of Medicine X in 2012, at small conferences (that I knew wouldn’t be recorded), consulting privately. Every time I opened up, someone would approach me and open up too. In that way, I knew I wasn’t alone, but more importantly that I could give a voice to those who weren’t able to speak. I could listen to truths many couldn’t tell others – whether because of similar fears of discrimination or being misunderstood.  These secrets I hold close, knowing all they represent.

Without the devastation that was 2015 for me, I would not be in this place – able to stop hiding. After my rather public twitter melt down last December 18 and my posts shortly before and since, there can be no more hiding. Like the article revealing my reliance on food stamps, the truth is public. It’s out there and now I have the opportunity to make something out of it – whether that means being a better advocate, humbly offering my experience, listening to others and bearing witness to their stories, or adding to the solidarity those who are also living with mental illness that they might know they aren’t alone.

I do not pretend to represent all mental illness, or that my story should exemplify what it is to live with several debilitating mental and physical illnesses. This is simply my reality.

#imnotashamed

I can no longer hide it.

No one should have to hide.

________________

I also can’t hide that I’m still in need of housing. If you’re able to assist, please visit generosity.com

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4 Responses to I’m Not Ashamed

  1. Concerned in DC says:

    Although there is no reason for shame you probably will never get a job again now that you have gone public with a personality disorder – (vs trauma survivor or even bi-polar) .If I was your attorney or therapist I would tell you it was huge mistake. You also won’t be able to get malpractice insurance now and your future clients won’t hire you so you basically just gave up your already limited ability to practice law

    To pass the bar (or keep your license) in Colorado.

    Within the past five (5) years, have you been diagnosed with or have you been treated for any of the following: … bipolar disorder or manic depressive mood disorder, major depression … or any other condition which significantly impaired your behavior, judgment, understanding … or ability to function in school, work, or other important life activities?” (Colorado)..

    The reality is that mental illness is still hugely misunderstood and although you might think that it is the same as any other illness it isn’t and I wonder if your dramatic public suicide attempts hurt others with the same diagnosis more than helped them since it feeds into the violent out of control myth of the mentally ill.

    A personality disorder like BPD isn’t really a brain disorder but a behavioral one and it is under your control to stop your self destructive behavior in the same way that people who drink or use drugs need to stop using their behavior to manage their emotions. People will wonder are you using your DBT skills? If not why not?

    • Thank you for your concern.

      I am acutely aware of the stigma surrounding BPD and thus kept it a secret for a long time. I also know that it is not like any other mental health illness, and is quite severe. In fact, when I was first licensed in Texas, they required every new attorney to take a an intro to being a lawyer CLE. During that CLE they brought someone in to talk about mental health and I remember quite vividly them saying “Never take a client who has borderline personality disorder.” While I was not officially diagnosed as having BPD at that time, that warning stuck in my head.

      When I seek to be barred in the state of Colorado, I will of course disclose my mental health conditions to the bar as required (though the ABA now recommends that mental health not be used to determine character and fitness for admission to the bar – http://www.americanbar.org/news/reporter_resources/annual-meeting-2015/house-of-delegates-resolutions/102.html). There are many in Colorado who have been similarly diagnosed with mental health illnesses, including BPD who are practicing law and in good standing. When I am barred, I will also continue to attend Colorado Lawyer Helping Lawyer (clhl.org) groups and work with the Colorado Lawyers Assistance Program who work closely with those suffering from mental health or substance abuse issues (which is quite high in the legal community).

      For now though, I do not plan to practice at this time and am on disability considering my man mental health and physical health illnesses. If I do decide to work, I will probably reenter the world of policy, which has always been my primary focus. I will worry about clients and malpractice insurance when I get there, but I have a feeling that it’s not impossible if I’m well enough to work in the future.

      I am sorry that you misunderstand this disease so much. It was emphatically not a mistake for me to disclose that I have BPD as it was not a mistake for Linehan to disclose that she has BPD nor for Brandon Marshall to disclose that he has BPD. The shame is in chastising someone for disclosing or making them feel like they shouldn’t have been open and honest. To remain quite, is to perpetuate stigma.

      Borderline Personality Disorder is in fact a “brain disorder” with behavioural aspects. Of significant interest are findings that highlight differences in the amygdala/limbic system and prefrontal cortex. These would suggest taht it is not merely a matter of “stopping my self destructive behaviour.” (I would encourage you to learn more about the biological and genetic underpinnings of substance abuse as well.) For BPD, I would refer you to the following neurological studies:
      • Beeney, J. (2015). Self-other disturbance in borderline personality disorder: neural, self-report, and performance-based evidence. Personality Disorders: Theory, Research, and Treatment.
      • Bertsch, K. (2013). Oxytocin and reduction of social threat hypersensitivity in women with borderline personality disorder. American Journal of Psychiatry, 70(10).
      • Blackwood et al. 1986, Kutcher et al. 1987, Drake et al. 1991
      • De la Fuente JM, Goldman S, Stanus E, et al. Brain glucose metabolism in borderline personality disorder. J Psychiatr Res1997;31:531-41
      • Depping, M.S., et al. (2015). Common and distinct structural network abnormalities in major depressive disorder and borderline personality disorder. Progress in Neuro-Psychopharmacology and Biological Psychiatry.
      • Donegan NH, Sanislow CA, Blumberg HP, et al. Amygdala hyperreactivity in borderline personality disorder: implications for emotional dysregulation. Biol Psychiatry 2003;54:1284-93.
      • Driessen M, Herrmann J, Stahl K, et al. Magnetic resonance imaging volumes of the hippocampus and the amygdala in women with borderline personality disorder and early traumatization. Arch Gen Psychiatry 2000;57:1115-22.
      • Ebner-Priemer U.W. et al. (2005). Affective dysregulation and dissociative experience in female patients with borderline personality disorder: A startle response study. J Psychiatry Res 39.
      • Gurvits, I.G. et al. (2000). Neurotransmittery dysfunction in patients with borderline personality disorder. Psychiatr Clin North Am 23.
      • Haas, B. W. (2015). Borderline personality traits and brain activity during emotional perspective taking. Personality Disorders: Theory, Research, and Treatment.
      • Hazlett EA, New AS, Newmark R, et al. Reduced anterior and posterior cingulate grey matter in borderline personality disorder. Biol Psychiatry 2005;58:614-23.
      • Herpertz SC, Dietrich TM, Wenning B, et al. Evidence of abnormal amygdala functioning in borderline personality disorder: a functional MRI study. Biol Psychiatry2001;50:292-8.
      • Irle E, Lange C, Sachsse U. Reduced size and abnormal asymmetry of parietal cortex in women with borderline personality disorder.Biol Psychiatry2005;57:173-82
      • Izurieta Hidalgo N.A. et al. (2015). Time course of facial emotion processing in women with borderline personality disorder: An ERP study. J Psychiatry Neuroscience.
      • Jin, X., et al. (2016). A Voxel-Based Morphometric MRI Study in Young Adults with Borderline Personality Disorder. PLoS One 11(1).
      • Juengling FD, Schmahl C, Hesslinger B, et al. Positron emission tomography in female patients with borderline personality disorder. J Psychiatr Res 2003;37:109-15
      • Kathryn R. Cullen, M.D.; Melinda K. Westlund, B.A.; Lori L. LaRiviere, M.D.; Bonnie Klimes-Dougan, Ph.D. An Adolescent With Nonsuicidal Self-Injury: A Case and Discussion of Neurobiological Research on Emotion Regulation; Am J Psychiatry
      • Kolla, N.J. et al. (2014). Elevated Monoamine Oxidase-A distribution volume in borderline personality disorder is associated with severity across mood symptoms, suicidality and cognition.
      • Lange C, Kracht L, Herholz K, et al. Reduced glucose metabolism in temporo-parietal cortices of women with borderline personality disorder. Psychiatry Res2005;139:115-26
      • Lieb, K. (2004). Borderline Personality Disorder. Lancet 364.
      • Lyoo, I.K. et al. (1998). A brain MRI study in subjects with borderline personality disorder. Journal of Affective Disorder 50.
      • Minzenberg, M.G. et al. (2007). Frontolimbic dysfunction in response to facial emotion in borderline personality disorder: an event related fMRI study. Psychiatry Res 155(3).
      • Morphometric differences in central stress-regulating structures between women with and without borderline personality disorder Andrea Kuhlmann, MD (candidate), Katja Bertsch, PhD, […], and Sabine C. Herpertz, MD
      • New, A.S. et al. (2007). Amygdala-prefrontal cortex disconnectionin borderline personality disorder. Neuropsychopharmacology 32.
      • Nicol, K. (2015). Childhood trauma, midbrain activation and psychotic symptoms in borderline personality disorder. Transl Psychiatry 5.
      • Niedtfeld, I. et al. (2012). Funcitonal connectivity of pain-mediated affect regulation in borderline personality disorder. PLoS ONE 7(3).
      • O’Neill, A. and Frodl, T. (2012). Brain structure and function in borderline personality disorder. Brain Structure and Function 217(4)
      • Peters, J. (2015). The rewarding nature of anger rumination in borderline personality disorder: an fMRI investigation. Theses and Dissertations-Psychology. University of Kentucky.
      • Reitz, S. et al. (2015). Incision and stress regulation in borderline personality disorder: neurobiological mechanisms of self-injurious behavior. The British Journal of Psychiatry.
      • Rusch N, van Elst LT, Ludaescher P, et al. A voxel-based morphometric MRI study in female patients with borderline personality disorder. Neuroimage2003;20:385-92.
      • Schmahal, C. and Baumgartner, U. (2015). Pain in borderline personality disorder. Pain in Psychiatric Disorders 30.
      • Schmahl and Seifritz 2003
      • Schmahl C.G. et al. (2002). Neurobiological correlates of borderline personality disorder. Psychopharm Bulliten 36.
      • Schmahl CG, Elzinga BM, Vermetten E, et al. Neural correlates of memories of abandonment in women with and without borderline personality disorder. Biol Psychiatry2003;54:142-51.
      • Schmahl et al. 2003
      • Schmahl et al. 2004
      • Schmahl, C. et al. (2006). Neural correlates of antinociception in borderline personality disorder. Arch Gen Psychiatry 63.
      • Schulze et al. Neural Correlates of Disturbed Emotion Processing in Borderline Personality Disorder: A multimodal Meta-Analysis
      • Siever et al. 1999
      • Skodol A.E. et al. (3003) The borderline diagnosis II: Biology, genetics, and clinical course. Biol Psychiatry 51.
      • Tebartz van Elst et al. 2001
      • Williams, L.M. (2006). “Missing links” in borderline personality disorder: loss of neural synchrony relates to lack of emotion regulation and impulse control. J Psychiatry Neurosci 31(3).
      • Winter, D. et al. (2015). Dissociation in borderline personality disorder: Disturbed cognitive and emotional inhibition and its neural correlates. Psychiatric Research Neuroimaging, 233(3).

      To understand the stigma around BPD more, feel free to read the following publications:
      • Bodner, E. et al. (2015). Psychiatrists’ fear of death is associated with negative emotions toward borderline personality disorder patients. Psychiatry Research, 228(3).
      • Fitzgerald, W. E. (2015). The effects psychiatric labels on psychotherapists attitudes towards potential clients with major mental illness. Massachusetts School of Professional Psychology.
      • Fraser & Gallup (1993). Nurses’ confirming/disconfirming responses to patients diagnosed with borderline personality disorder. Archives of Psychiatric Nursing, 7, 336-341.
      • Gallop, R., Lancee, W.J., and Garfinkel, P. (1989). How nursing staff respond to the label “borderline personality disorder”. Hospital Community Psychiatry. Vol 40(8), pp. 815-9.
      • Heightman, L. (2014) Origins of Clinician Bias Against People Diagnosed with Borderline Personality Disorder. Smith College. School for Social Work.
      • Hersh, R. (2008) Confronting myths and stereotypes about borderline personality disorder. Social Work in Mental Health.
      • Sansone, R. (2013). Responses of Mental Health Clinicians to Patients with Borderline Personality Disorder. Innovation in Clinical Neuroscience. Vol 10.
      • Sulzer, S. H. (2015). Does “difficult patient” status contribute to de facto demedicalization? The case of borderline personality disorder. Social Science and Medicine, 142.
      • Wehbe-Alamah, H. and Wolgamott, S. (2014). Uncovering the mask of borderline personality disorder: Knowledge to empower primary care providers. Journal of the American Association of Nurse Practitioners.

      And finally – your condescending town about the seriousness of the suicide actions I took are not well received. I do not know how you might think committing suicide in a private room is “public.” Perhaps you are referencing my writing on these attempts. I do hope that they do not hurt others. My intent about sharing my experience is to show that this disease is a very difficult and complicated disease to manage and in my case it has nearly led to death. I can assure you that many have told me that my writings have been helpful and to that end, I will continue to write. I will not be bullied or silenced by someone who tells me that my speaking is a mistake, implies my legal career is ruined, suggests that I am contributing to a “violent out of control myth of the mentally ill,” and without knowing any of the research makes judgments about the course and treatment of the disease. What’s more telling, is that you would not say these things outright, not having affixed your name to your comments.

      Regardless, with or without your name, I am glad you wrote so I could have an opportunity to highlight and fight the stigma and ignorance others like you continue to perpetuate.

  2. […] It’s not that I’m ashamed of my mental illness.  It’s just not exactly something you start talking about when you run across someone you haven’t seen in a while.  I don’t want to scare people with my mental health history.  I don’t want them to judge me after all this time.  At some level I want to sit down with them and tell them everything.  But mostly I beg that they won’t want to spend too much time catching up because it’s hard to keep up the facade that everything is fine.  They don’t want to hear the messy details of what has become my life, not because they don’t care, but because it’s too much all at once. […]

  3. […] know the stigma around mental health – thus the campaigns like #IamNotAshamed and #SickNotWeak.  But BPD takes on a stigma exponentially more damaging – not only in the […]

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