Community Contributions: Mine Is Bigger than Yours

Magically, and to varying degrees, I either know or have come to know everyone who has thus far commented and discussed on DefineFunctioning (ha ha! even my super-favorite anonymous comment). So, I suspect that this blog post by new forum member Natalie may be of interest to most of us. In it she draws out some of the parallels between Coming Out as Crazy and Coming Out as Queer. If you’d like to take a worthwhile minute and read it, I’ll wait here.

If you decided to rely on the excerpt you know I’m keen on providing, then know that I’m skipping right to the part for our discussion:

“I’ve found that some of my fellow crazies are pretty damn judgmental about 1) just how long you’ve been officially diagnosed as crazy, 2) just how much said craziness is presently wrecking your life, and 3) exactly what you’re doing for said craziness.

And if you’re deemed not crazy enough, not miserable enough, or not medicated enough, well, your viewpoints are often written off as inexperienced and foolish. (Or, ironically, just plain wacko.)”

In light of the last post dedicated to DFW, I’d like to posit that  this sort of comparative judgment is both prevalent and truly damaging in more ways than I can count right now. In case you’re new here (Welcome!), I’ll reiterate that DefineFunctioning is based largely on the need to self-define “functioning,” “wellness,” “crazy,” “treatment,” and the like. As a result, when I read Natalie’s post (my comments are in there), I was angry, worried, and sad. It is largely these comparative, ranking, and hierarchical statements that limit the resources and support available to the “high-functioning.” They are the reason I couldn’t feel comfortable in a typical support group despite really feeling like I needed support. Question: Have you ever felt that your diagnosis, your difficulties, or your personal experience were invalidated or undermined by your level of functioning?

This sentiment strikes an even deeper chord for me as well, one that is terrifying to admit for its implications. Question: How will the mentally ill community address stigma in any significant way if some of its members are meant to feel that they may not actually belong to said community? Being a long-time quasi-misanthrope, community membership isn’t something I hold onto in a life-and-death sort of way, and I’m willing to bet that most of us have rarely felt like we “belonged” somewhere. Still, if there’s one place where our individual understandings, perspectives, and experiences should be valued it’s within the context of other people with mental illness diagnoses, right? Whether you’ve experienced that strange dismissal first-hand or not, that anyone might be experiencing it represents a difficult-to-swallow state of affairs: fracture. That might have sounded a bit dramatic, but I started this forum because I couldn’t find a forum. And maybe I couldn’t find one because of this fractured state.

Let me start this discussion by sharing something that’s difficult for me to say: I feel something akin to shame when I disclose my diagnosis to an MI patient who doesn’t work, who doesn’t have a relationship or family, or who doesn’t “pass” for non-MI. I feel something like survivor’s guilt. I know how hard my day-to-day life is, but I also know that I am lucky for what I have. I shouldn’t be ashamed that I’m not on disability. I shouldn’t be ashamed to feel lucky. Like many, severe mental illness runs in my family. As such, I have seen what life would be like if I weren’t so lucky. I am thankful everyday. But I know my guilt is not because I am grateful; I know it is because I’ve been judged as unfairly fortunate. I should not have to explain my functioning or make excuses for it. I should not have to be forgiven. I should not have to feel like I need to forgive myself.

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13 comments
  1. Meredith said:

    Shoulds belong in the trash. However, I understand where you’re coming from. Shoulds aside, we would like to not have to do those things, but we do. About a year after I was first medicated, I went on the FB bipolar disorder page to connect with others. I was relatively stable. After interacting on there for a while, I started feeling worse. And, I felt I couldn’t respond to most of the people because they were struggling so and I wasn’t. It was as if I hadn’t struggled like they had so had nothing to offer. I also didn’t get what I needed. I left that board and didn’t return until a few months ago (several years later). I am in a much better place now that I don’t feel like I can’t help them. I don’t know what happened. Maybe it’s because I had more positive experience behind me that I could shore myself up without feeling dragged into it. But you were smart, ∃. You did it. However, making strong connections with likes can possibly be isolating. Empathy is the key. At any rate, I am ecstatic to be here. Thank you!

    • said:

      I need to find a trash can.

      • I just now noticed this. cute. I think we all need a big metal one so we can set them on fire afterward.

  2. Natalie said:

    When I first read this, many hours and many toddler meltdowns ago, I had some really thoughtful responses brewing. And now I feel like mush. I promise I’m not always so delicate, but I’m going on 48 hours sans wife, my writing break from my child today was canceled last minute, and he is all but refusing to nap because he’s sad that his mama is away. So, this is not the calm, cool, collected me responding. (Right, because I’ so often calm, cool, and collected.) :)

    Now that I have my disclaimer out of the way…I’ll work on recalling my original reactions, in the meantime, I’ll be tacky and quote myself. One of the first posts I put up last month (“Diagnosis”) addressed this lack of resources and community for us “high functioning” folk:

    “When I was first diagnosed with “Bipolar Disorder,” I was relieved. And terrified. And confused. I was relieved to know there was a reason why I felt and acted the way I did, I was terrified I would be locked up and/or medicated into a zombie, and I was confused about why I was “bipolar” and what exactly I should do about it.
    So, true to nature, I started to obsess and research like a fiend. …I scoured the internet for days on end seeking information, guidance, input from people who’d been there, done that. Seeking community. Seeking solace.
    But what I found didn’t provide the comfort or camaraderie I so desperately needed. What I found scared the shit out of me. The information and guidance, for the most part, advised that “Bipolar Disorder” is a dangerous, lifelong “mental illness” that relegates its sufferers to half-lives of utter incompetence, dependence, medication, and hospitalization. The input from people who’d been there, done that was scarce – much of what I did find seemed scattered and rambling and lost. Most people seemed resigned to a fate of “mental illness” and to all that phrase entails. It didn’t take long for me to decide this was not me. That obviously the diagnosis was wrong because I was neither incompetent nor incapable nor ill. I rejected the notion that something about my very being could derail everything I wanted for my life and my family. That somehow I was “less than.”
    That rejection served me well, in that it made me question everything, rather than just playing along and doing what I was told like a good little girl. That rejection also got me into a load of trouble. But I maintain that had I not gone through that process, and gone off like a runaway train into a full blown mania lasting several months, I would not be where I am today. Because if nothing else, it served as a huge wake up call.”

    So, hell yes. I definitely feel my level of functioning has undermined the general perceptions of my difficulties. I’ve actually had very well-meaning friends say things like “Oh, right, but you’re obviously just a little bipolar, not the seriously crazy kind.” Wow. Talk about invalidating my experiences. It always feels like I got punched in the gut, and it makes me want to go into gory detail about the things I did when I was psychotic. (But I don’t.) And as for other MI folk, yeah, it just seems like we’re not part of the club if we’re able to live full and productive lives. Like they assume we don’t fight many of the same battles just to get by each day.

    It doesn’t help that I personally reject the label of “mentally ill.” Please don’t punch me in the throat for saying that. I fully embrace being bipolar, I just don’t embrace the idea that being bipolar means my brain is broken or I’m chronically ill. Every time I tried to accept that I was “ill” it just chipped away at my determination to find my way back to stability. So I said fuck it, I’m not chronically ill, I’m just experiencing temporary instability, and that’s that. It not only bolstered my determination, it helped me realize there are far more positive things about me being bipolar than negative things. That might sound fucked up – but I think if you took the bipolar out of me, you’d take things like my creativity, my ability to think way outside the box, and my fiercely passionate nature along with it. So for me, it’s become a matter of identifying my triggers, putting tools in place to help myself, and finding balance, rather than looking to be “cured” of a disease. And the more I embrace my challenges rather than beat myself up for having them in the first place, the better I feel. (Though I do feel like I’m still healing from the psychosis, and it remains to be seen whether some of the changes in me are permanent or if they will continue to stabilize.)

    That, combined with the fact that I’m not on meds tends to really piss people off. I’ve taken that to mean they think I’m not “really” bipolar and that I’m only furthering the stigma of mental illness by rejecting the label. But they misunderstand my motivation – it’s not that I want to dissociate from them, it’s that I’d really like a different label. Rather than fighting to cleanse something so wrought with stigma, I’d like something more inclusive, more positive, something that not only encourages more people to get help, but also helps people see there’s nothing to be ashamed of. “Mental illness”…it’s not only full of ick factor, I think it leaves out so much of what we actually experience.

    I know, pie in the fucking sky. I’m ever the optimist. And yes, holy tangent, but there you have it.

    Thanks for starting the discussion!

    • said:

      This will be insufficient, but given current time restraints, I just want to get a couple things out before continuing this discussion further:

      Right. I spent six years off meds and fully out of treatment after I was diagnosed. I didn’t like the idea of treatment. I didn’t like what meds did to me. I didn’t like that someone was telling me that I’m not who I have always thought I was. My mantra was that “if my brain could get me into this mess, then my brain can get me out.” I learned to live with the highs and lows and persistent symptoms. I wasn’t ill. I was me. I fully rejected my diagnosis. Months after my intervention, I told my mom that the doctors were just plain wrong. And that was that. Every day of those six years was excruciating.

      Three years ago, I went back into treatment for reasons that could not be ignored or avoided, but it wasn’t until a couple months ago that I could say I had an “illness.” (I still have a problem with it in the first-person singular.) And the funny (funny?) thing is that my days are not not excruciating now.

      Where I’m going with this: We all have our own paths. And the idea that a single mode of treatment or drug cocktail or type of therapy would be the right thing for everyone is stupid. Further, the idea that what works at one time will always work is probably equally myopic. We all know where we are trying to go, and honestly — when we have a grip on reality — we’re the best equipped to know how we need to get there. So, welcome, Natalie. We’re happy to have you in this land of semantic confusion where everyone self-defines everything.

      Today (because you all know I’ll redefine this for myself tomorrow), I’m “mentally ill” because that’s the term we’ve got. But I’m not sick, and I’m not broken. I’m just trying to become myself. Most of the time, I do a really good job of being me. When I’m not doing such a great job of being me then I ask for help. I am not sorry that I’m not good at being someone else (for better or worse), but the experience of “becoming myself” need not be invalidated because of who that self happens to be.

      • Natalie said:

        I should clarify and say the excerpt above references my first diagnosis of Bipolar II – shortly thereafter I launched into a 3-month mania and psychotic break, and was subsequently diagnosed Bipolar I with psychotic tendencies. That episode was the most severe I’ve had by far, and almost robbed me of the most important people in my life. Since then, I’ve been pursuing rigorous treatment – just not meds (though I do take a medication-alternative called Empower). I know, I say I’m not ill, so then what am I being treated for? Yes, well, this is part of the mystery I’m unraveling for myself. Why am I like this? What made me this way? How much is nature and how much is nurture? At some points, yes, I guess “illness” was an appropriate term…but only in the context of something one can heal from. But then there are the parts of me that I consider part of my bipolar-ness that I would never want “healed.”

        So, yeah, for me right now the working term of choice is bipolar (not “a person with a diagnosis of Bipolar Disorder”…just simply bipolar). I also freely refer to myself as crazy – some people take real issue with that, but in my experience, they are never fellow crazies!

  3. Natalie said:

    ∃ – After reading my response above, there is no possible way you can cringe about your email. I even tried to edit myself, but alas, no, you are left with my tome. Sorry about that. :)

  4. right now I am self-defining as borderline. Say the wrong thing and I will tip, turn and twist about so intensely only one who has experienced it will know what’s up and what’s so not up. Perhaps tomorrow I will be more up-ended to respond.

  5. David said:

    Hi Guys,
    Mine ‘Is’ Bigger than Yours, is this a comment stimulated by intellect or instinct?
    I must confess I feel the need to compete, to show I’m better than You!
    I am stronger, more powerful, more intelligent, more capable of drinking from the well of knowledge than You!
    I’m OK! Dam It!
    Like everyone I struggle to define my humanity, humbled at times by the simple & divine, despairing of my need for your reflected affirmation and confused about respect & love.
    My recent journey has led me to re-frame my “mental illness’ as disruptive instinct, with mania as an unconscious and chaotic attempt to re-organize the neural systems within, a change in belief that has brought its own self-fulfilling consequence.
    For as long as we live in denial of our animal instincts, they will retain the power to both protect and defeat us?

    • ok. are you asking a question or trying to tell us something? (that was a question). I don’t know, you tell us since it was your post. What we resist persists. Is that what you’re saying, David? I wholeheartedly agree. So I resist the path of least resistance no more and go for the oreos, the ice cream, the easy prey (in love that is). Why the hell not. Move on with my animal instincts, I say! There’s nothing better. Dionysus had it right. Thank you for your reflected affirmation and words of wisdom on love and respect. I’m good to go!

    • said:

      Hi David. Nice to see a new face, so to speak, on DF. While I can’t say I fully understand your reframing, I can affirm that self-definition is the name of the game. A few questions: Reorganized neural systems are reorganized from what to what? Is it a change in belief that can be expounded on, specifically a change from what to what? Is choosing against one’s animal instincts the same as denying them? I, for one, believe that my volition is a sign of my humanity. Also, I’m a little confused as to how your comment responds to this particular discussion on comparative labels and its effects on stigma within and around the MI community.

  6. David said:

    Hi Guys,

    The re-frame is feeling myself as an animal and feeling the energies within without objectifying that energy into a ‘what,’ my mind has been in deep fear of the energies within unaware of the metabolic processes that stimulate it.

    I have postured a pretense that my minds eye view is primary and that I can know myself, I give intellectual lip service to scientific theories about evolution yet have not been comfortable with really feeling myself to be an animal.

    In a traumatic birth experience my autonomic nervous system was conditioned by experience to operate in a freeze/flight/fight response to life, rarely able to access the higher nervous system states available through the third branch of the ANS, the ‘social engagement system’ (see Porges “The Polyvagal Theory”)

    There are no objects inside my 100 million neuron brain or nervous system, so is a ‘what’ a valid term for my internal description? My mania’s were primarily about energy and movement, my instinctual orientation towards approach and avoidance, confusion came with an objectified reasoning about that experience.

    The neuroscience tells us that the generators of REM dream states are older in brain than those that generate our waking consciousness, perhaps in psychosis we slip into this older brain stimulation of the nervous system to address our foundational needs of animal instincts & energies of which the minds rationalizations are a discharge?

  7. Jess said:

    I’ve enjoyed reading this article and subsequent comments. I agree, that I also feel badly sometimes when I see others with this illness/disorder/issue (I’m open to whatever label, or lack of a label someone wants to take) worse than me. I have not been symptomatic for over a year, and I am so grateful for that. However, I do know that many others are struggling. The high-functioning aspect of my diagnosis does make me “pass.” It allows me to choose who I disclose my BP diagnosis to because I seem “normal” whatever that means! People are sometimes surprised when I tell them. The thing that usually prompts me to disclose is when someone says “oh he’s so bipolar” or what have you in a negative way. I am not really confrontational, but my thoughts in my head could cause someone to shut up if I said them outloud. Anyway, I’m digressing like whoa.

    I consider myself “mentally ill” only because I want to be counted, and I can show that my friends/family DO know someone who is mentally ill, so it’s less foreign. I don’t define myself by my MI, and I consider other qualities before I throw in the “bipolar” part, but is a part of me, whether I like it or not.

    Jess

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