Are You Your Illness?

Drawing of woman looking in mirror - MH@H Are you your illness?

Sometimes as part of anti-stigma campaigns you’ll hear rules that we shouldn’t say people are bipolar, schizophrenic, etc.  The thinking goes that phrasing it this way puts people in a little box in which they are primarily (or only) defined by their illness.

Yet at the same time, you’ll find many bloggers referring to themselves as “I am bipolar.”  I don’t think there’s really an equivalent for depression or anxiety disorders.  I could say “I am depressed”, but that implies a more temporary state of being than “I am bipolar.”  I could say “I am depressive”, and I know some people do use that language, but to me it just sounds a bit awkward.  Similarly, “I am anxious” does not carry the same sense of permanence as “I am bipolar” or “I am schizophrenic.”

Regardless of semantics, the question still remains – do you identify as your illness?

For me, depression first struck when I was 27.  I experienced it very much as something that was superimposed on top of me rather than something that was me, and I identified very distinct ill and well selves.  For the first several years, my illness was episodic; when I was sick I was very sick, and when I was in remission I was completely well.

As my illness has evolved, it’s become treatment-resistant, and remission just doesn’t happen anymore.  That’s led to an identity shift where I’ve had to fuse the distinct well and ill selves into a more unified self with living with illness.  That has mostly involved letting go of a lot of the well me that used to exist.  Along with that came a sense of mourning, almost.  It was hard to let go of that well me identity, but it had gotten to the point where it really wasn’t serving me anymore.

Now, my self is indistinguishable from my illness.  That doesn’t mean that the illness is all I am, but it does mean that the depression is present in all of the aspects of myself and my life.  There is no part of my life where depression is absent, so I suppose I am depression, although linguistically that’s rather odd.  Still, depression does not capture all of me.  I think being a mental health blogger has allowed me to feel more grounded in that hybrid ill self and inner self.

Establishing an illness identity is something I don’t think gets paid enough attention to.  It’s not a symptom of the illness, but it’s an almost inevitable consequence, and there really isn’t an easy way to go about it.  Whether you’ve had signs of illness since you were young and it’s all you’ve ever known, or whether it’s something that’s snuck in later in life and hijacked everything, it’s a difficult process that calls for a lot of self-reflection.

I’m not keen on other people referring to someone by their diagnosis unless they know that person identifies as such.  An illness identity is a very personal thing, and like any other aspect of identity, whether that’s gender, sexuality, religion, or whatever, I don’t think others have the right to make those identity determinations for us.

That being said, I think it’s ridiculous to tell people living with mental illness how we should or should not identify and describe ourselves.  Personally, sometimes I choose to reclaim the word crazy.  We should all be able to use whatever words we like to describe ourselves.

In terms of the bigger picture when it comes to stigma, I think language like “he is bipolar” or “she is schizophrenic” is probably the least of our worries.  And when it comes to saying “I am”, anything goes.

Do you identify as your illness?

 

book cover: Making Sense of Psychiatric Diagnosis by Ashley L Peterson

 

My new book Making Sense of Psychiatric Diagnosis talks about the role diagnosis plays in who we are.  It’s available on the Mental Health @ Home Store, as well as Amazon and other major retailers.

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39 thoughts on “Are You Your Illness?

  1. FearANDSelf-Loathing says:

    Excellent Post! I used to identify with my illness strongly than I realized I am not my illness but rather my illness is a part of me. I also commonly refer to myself as bipolar which my mother hates because she cannot let go of the stigma and fears I will be judged. I am proud to be bipolar though, it allows me to see things in a unique way. I’d argue mental illness is a superpower of sorts. You can understand struggle more acutely and are not as judgemental of others who experience it because you can relate. I understand, however, the fusion you talk about between the illness and yourself and it can be hard to separate.

  2. BeckiesMentalMess.wordpress.com says:

    Ashley, you bring up a damn good point.
    While reading this I became well aware of the fact that I dont necessarily say “I’m Bipolar” or “I have anxiety and panic disorder” – I simply state the syptoms such as, “A depressive episode or anxious”
    I think reasoning for this is that I assume every one of my readers already know that I am Bipolar, OCD, PTSD, have Anxiet/Panic Disorders.
    It’s not because I’m afraid of the stigma, it’s because I feel as though…” I am not my illness” – I am, however a person with an illness.
    All that being said… I should be more aware of when I am writing a piece on mental health, to be more clear as to what types of mental illness/disorders I do have, and not base it on assumptions.

      • Liz says:

        This is a good post and not something I would have thought about, but certainly easy for me to answer.
        I don’t say I am depressive, or I am anxiety. I just introduce myself by my name. I am me.
        I only mention my depressiin and anxiety if it requires it, like if the topic of conversation comes up and I may say I have had depressive episides, or having a dark time right now for example.
        Or another example I suffer from anxiety.

        But for years, when it came to me being deaf, I say I am deaf. But I came to a point I stopped doing that and did the same thing with that as what we talking about now and it’s my name first before my disability.

  3. skinnyhobbit says:

    Hmm, I’m not sure. I have diagnoses but I don’t feel they capture everything that’s going on with me. I, however, do identify very much as both”someone healing from complex trauma” and “a complex trauma survivor” because that’s the underlying cause unifying all my various official and unofficial diagnoses.

    Identifying this way does lead to people trying to push the victim/survivor dichotomy on me, and “You’re not defined by your trauma”. I get why, but at the same time, there’s no before trauma me, no “before anxiety” me. My whole personality disorder (which some would prefer to call CPTSD but I don’t feel I qualify) basically exists because of my complex trauma starting from before I had established a sense of self… so my whole neurobiology is pretty much DEFINED by it, ya know?

    Does it mean I don’t want to recover? Hell no. I never thought someone saying “I’m a schizophrenic” means they don’t want remission or reduced symptoms or a life they enjoy living.

  4. crushedcaramel says:

    I find this really interesting Ashley.

    I wrote out a long comment just now…but I was making a mess of it! So I deleted it.
    But I know those who find it helpful to identify with their conditions and speak liberally about how such affect them.
    I also know those who try to avoid anyone realizing the challenges they face. I respect anyone is entitled to make their own decisions about what is helpful to them to make sure they are enjoying life.

    <3

  5. Melanie B Cee says:

    Yes and no. I don’t honestly believe I ‘identify’ as chronically depressive, but I worry that perhaps I do. It’s rare I feel what passes for happy in my world, or upbeat or even optimistic. But it’s been that way so long that I’ve come to accept that’s ‘who’ I am. I can rail against it and I certainly don’t go around playing the victim because of it, but it defines ‘me’. I don’t like that but really what am I going to do?

  6. lavenderandlevity says:

    The thing about PTSD from childhood on, a genetic disorder (EDS) and neurodiversity is all of them are things that have been with me since my earliest experiences. It would be kind of hard to separate any of them from “me.” But, only the neurodiversity sounds grammatically okay in identity-first language. “I am Ehlers-Danlos Syndrome” or “I am PTSD” sounds even weirder than “I am depressive.” But, even if it didn’t, I think there’s something about neurodiversity that would still feel more “who I am” and less “what I deal with.” I had that sense even before I learned what a personal choice it is in neurodiversity advocacy groups for the choice of identity-first vs. person-first language. I think for me it boils down to whether I *perceive* fluctuations. The more I can perceive a diagnosis as something that fluctuates over time, the more it *just* feels like a diagnosis, and not an identity. I can perceive more and less degrees of depression, more or less dissociation or nightmares, etc. Even more or less severe pain at different times with the same diagnosis for the EDS. Thus, it feels more appropriate to say I “have,” those, because I perceive the variations/when these diagnoses are affecting me more or less. But, no matter whether I’m in crisis or “safe”, on holiday or at home, practicing self-care or failing miserably at it, I’m always basically the same “amount” of neurodiverse. Therefore, since there’s a steady baseline and it’s always with me…my neurodiversity feels more inherently “me” than my other diagnoses? Also, I guess I’m getting to the point where I at least *want* to fully shed the legacy of the things that caused the PTSD by maybe not viewing my own neurodiversity through the bully-in-my-brain’s voice that it is somehow not just a “diagnosis” but also makes me “lesser?” Easy enough in neurodiverse-positive posts. Still dang hard to convince the legacy of trauma, even if I won’t call the PTSD part of my “identity!”

  7. Marie Abanga says:

    I love this post. Indeed this morning I introduced myself on Facebook as ANGRY MAD MAG (my abbreviated name) – I sometimes feel tired at this rigmarole of words/labels like the ‘right’ ones could just make you less anxious or depressed etc- maybe/maybe not

  8. Paula Light says:

    I do identify with all my issues. But it sounds odd to call myself them. I am a migraineur? I am a chronic pain sufferer? I have struggles with food and body image. I don’t say these things. But they make up the tapestry of me. They affect my life every day, what I eat, my social event participation, how much light I can stand, noise levels I tolerate, etc. All of that together made up one of the factors (a large one) of why I gave up dating. I don’t want to explain, and be judged and advised, by some new random man about my headaches and back pain. I don’t want to hear about this chiropractor that his coworker loves or that his sister gave up dairy. I’ve heard ALL OF IT. 🤣

  9. Meg says:

    This is a great topic, and a great post! I definitely think it depends on the person; with me, I have schizophrenia and bipolar (schizoaffective disorder, bipolar type) and pure O (from OCD). And probably, as a subset, or in a secondary sense, not that I’ve ever been diagnosed with these, I’ve got some form of PTSD, I’m very dissociative, I might have some sort of bizarre personality disorder, I have massive fatigue problems (that seem to be somehow tied into my mental issues), and then some. But what I identify with is that I’m schizophrenic. I don’t identify with bipolar, because even though I’ve been manic a handful of times, the problem disappears with a modicum of Seroquel. Bye bye, bipolar. The pure O bugs me, but for whatever reason, I don’t identify with it. It seems more like the way my mother has taken over my brain, in that case. But the paranoia is a day-to-day struggle, and it seems to tightly interwoven with who I’ve always been that it’s how I see myself. (However, I don’t feel down over it, so it’s not a problem.) My mom says that when I was five and she’d take me out and about, I’d say, “Mommy, Mommy, make those mean people quit looking at me.” (Those mean people were just strangers at the grocery store or wherever who were just doing their thing.) So it’s that deeply ingrained. The whole energetic pollution thing, which hit me hard yesterday (I never blogged about it), is a constant issue, and there aren’t enough antipsychotics to fix it.

    Oh, by the way. With anxiety, I think you could say, “I’m anxiety-ridden,” rather than, “I’m anxious.” With depression, you’re right–tricky wording indeed!

    Maybe that’s the difference. Maybe I relate to schizophrenia so strongly because it’s somehow in my personality. Huh. Well, anyway, yeah, wording should be case-by-case. I’d never want to offend someone by saying, “So, you’re depressed?” if they word it like they have depression. But you know, one time I got into an argument with my evil sister, the social worker, over it. She said, “You shouldn’t say you’re schizophrenic, Meg. You should say you have schizophrenia,” and I was like, “Uh… can’t it be my choice?” (Not with her!)

  10. eirlysgwenllian says:

    I don’t see this the way that I am my illness, it doesn’t make much sense to me, but my mental illnesses are definitely a part of me that is significant for my identity, and so I am okay with saying things like “I am mentally ill” rather than “I have a mental illness”, I think I personally use them interchangeably. I also sometimes say I’m dysthymic or I’m emetophobic or something-else-phobic just because that’s shorter than “I have dysthymia/emetophobia”. With my other diagnosis which is AVPD it’s not quite as easy to make such a descriptory term, I could say I’m avoidant but that doesn’t say much and sounds weird, and even idiotic in Polish. And I’m certainly not AVPD, I feel like that would imply that the only thing I am is AVPD, but maybe it’s just how I feel it. In any case that sounds awkward, so I just say I have AVPD, similarly with anxiety. And I have no problem with people referring to me as dysthymic, mentally ill, and people I’m closer with calling me crazy or nutty etc. same as I have no problem with people referring to me as blind (rather than with visual impairment, as visual impairment is such a fuzzy term like a lot of politically correct terminology, that doesn’t mean anything, I used to think that it is a thing in English to say I have a visual impairment/am visually impaired rather than blind, and I once wrote this way to a guy who replied “Oh that’s okay, I wear glasses too” 😀 ). What I do mind is when people say things like for example “This is Emilia and she is blind” when introducing me to someone. Maybe I’m hypersensitive (though I don’t think I am in this particular regard), but people saying that I’m blind as the first and thus most important thing about me in a context in which this piece of info is irrelevant or not so very relevant drive me nuts. Of course, this is a huge part of my identity that I’m blind, but I would have to be incredibly boring if that would be the most important thing about me. 😀

  11. Michelle says:

    I have had depression and anxiety for all my life for the most part. Intermediate school is when it started and I became diagnosed in middle school. Sadly I know longer know a life without it. This is why taking medication doesn’t work well for me. I don’t feel normal on it. So in a way, I do identify with my anxiety and depression. I am fairly open about it with others as well. I just don’t say it in a way that implies that it’s all I am and they should understand that.

  12. Egotheist says:

    Whenever something is an important part of your life (either negative or positive) it’s also to some degree a part of your personality, thus identity. It’s similar to saying “I’m a vegetarian/atheist/liberal/whatever”. It doesn’t define everything about you but living with mental health problems is nevertheless a part of your life. I usually talk about being a borderliner whenever it’s needed to clarify my own behaviour is certain situations. It’s a part of me but there’s so much more as well.

  13. Karen says:

    Great post.
    I have depression but am not depressed, thanks to the meds! Having resigned myself to the possibility that a relapse could occur at anytime, I’m happy to say I have depression even if I’m in a decade long depression free period. But I am not the illness.

    Some illnesses are always there, some are episodic, some may be symptomless or awaiting some kind of trigger. As you say, the individual can refer to themselves however they wish, but in speaking about someone else I think the person has to be the important part, the illness just a disabling aspect of that person.

  14. captaintrips says:

    Thank you for this post. I felt defined entirely by my illness for such a long time and believed that ‘being bipolar’ was all I was going to be for the rest of my life. I still struggle with it everyday, as I am trying to become more than just ‘bipolar’ and trying to be able to identify myself as someone else outside of that. However, I must admit that it stays with me always, and probably always will – it’s just a matter of me accepting that it is a part of me, but not the whole thing. I really enjoyed this post and it got me thinking, so thank you 🙂

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