That’s the expression I came up with when I was trying to assimilate and collate and accept and put together and place all of the stickers which had been slapped onto me. I don’t mean to dismiss diagnoses outright, they help point you towards what you need, but they are a double-edged sword.
One of the pages that I wrote some time after I had gotten all comfortable and cozy with my jelly jar tags sort of sums up my feelings on that duality nicely:
. . . B) diagnoses are only helpful insofar as they can point you in the direction of the proper treatment, and C) labels are for jelly jars. . . I am so much more than just a listing of diagnoses. . . I am intelligent and creative and curious and beautiful and honest and a writer and an advocate and a reader. I am wonderful with children, I take interesting photographs, I am loyal and supportive, I am kind, I understand the things in this life that cannot be understood, and I can love like no one you have ever met in all of your days.
I’m presenting this background and excerpt because I want to pose to all of you reading this who may happen to be a jelly jar an open question: What does your diagnos(es) mean to you, personally? Have you found some degree of acceptance? Do you think you have successfully integrated things in yourself? Do you feel you may let the name of your malady define you too much; or conversely, do you reject it and hold it at arm’s length?
Okay. That was more than one question. But I have an excellent reason for soliciting so much for input and answers. Unfortunately, I cannot tell it to you right here and now.
I debated on posting this, because I cannot tell you, and that doesn’t really seem fair of me. But I can tell you this much, and it may help you to understand why I chose to, ultimately.
I need help.
I need help for myself and for those around me. And though I did not originate the expression about relying on the kindness of strangers, in the short time I have been blogging, I have encountered so many incredible, marvelously kind “strangers.” People who want to help, people who want to share, people who just want for me, for us all, to be well. Many of these people I now know not as strangers, but, happily, as friends.
So rally ’round all, and many thanks in advance for the comments and feedback you provide to me.
Comments are now closed, in (somewhat belatedly) keeping with the format of our ‘Let’s Talk About’ posts. To join in the discussion, please go to our page March 2012: Labels Are For Jelly Jars.
© Ruby Tuesday and A Canvas Of The Minds 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Ruby Tuesday and A Canvas Of The Minds with appropriate and specific direction to the original content.
I’ve fluctuated back and forth about bipolar in the past 2 1/2 years since I was diagnosed. At first I was really relieved; then I was pissed. Most of the time now I see it as a blessing. I know I am how and who I am because I wear this invisible sign around my neck. Although, only those who know about it, know about it. I’ve become a lot more selective with who I share it with. For awhile I identified so much with bipolar that I got very defensive and wanted to prove to everyone that I could still function in the midst of a mental illness. Then when I started to have many stable days in a row, it was hard to believe that I’d experienced rapid cycling and I thought those around me would think I made it all up. I wondered if I really even had bipolar. Now, I know that it’s part of me just like my hazel eyes, brown hair, quiet nature. At times I have held it at arm’s length because I just didn’t want to be like all of ‘those’ people. Two sides of the same coin. I was proud to be associated with so many wonderful famous people, but I didn’t want to be seen as ‘crazy’. Actually, like most things with me…it’s all in my head! No one brings it up. The only people that ask know to the extent that I’ve been safe sharing it with them. They ask how I’m doing or how I’m managing my symptoms Those are some of my family, a few close friends, and this wonderful lady from my church who heard me speak when I did a mental health advocacy speech last fall. Otherwise, it’s just those that I blog with and for.
If it weren’t for my diagnosis, I wouldn’t be on a completely new path for my life. I wouldn’t be going to graduate school. I wouldn’t be advocating for those of us with a difference in brain processing. I would maybe still be wondering why and still searching for why I am different. I wouldn’t have learned so many effective ways of self-care and how to cope. I am able to love myself now rather than wish I were someone else. I trust myself and my feelings. I don’t feel ashamed or guilty for my behavior or words because I can stop the thoughts of ‘it’s not MY fault; it’s yours’ while the other person in my midst felt run over by a truck or had to walk on egg shells because of my mood swings. All this because I have bipolar. I am a wonderful, caring, compassionate, empathetic, deep thinker. I look for the beauty and blessings around me everyday. Because of my heightened awareness, I am privy to amazing things that go right over the heads of others. I am so much more than my diagnosis.
Shelly, wow. This is wonderful. It’s truly amazing, and more than I had even dared to hope for. You’re truly amazing. You have given me so much to consider and to think about, and I want very much to say thank you. I am so grateful to you.
Great post, Ruby. I don’t know if it’s with you that I have shared this, but my wife recently wrote on her own blog: “I have been interviewed, observed, medicated, counselled, poked, prodded, diagnosed, rediagnosed, and undiagnosed.” This each time she’s been trying to tackle which at times have been tagged as either depression, postpartum depression, borderline personality disorder or bipolar type II. She just finished a stay as an out-patient in a day hospital. Before leaving, the head psychiatrist told her that psychiatry was new(er) and that they don’t treat diagnosis/disorders, they treat symptoms. So basically, the drugs she were on could be treating symptoms of bipolar as much as symptoms of postpartum depression.
I guess the point is to heal. To explore one’s self, to understand your triggers, etc. But as you know so well, this is not always an easy thing to do, especially when perhaps you’re already in dysphoria or in mania.
It’s hard, and I can really feel for your wife (incidentally, I don’t know if her blog is public, but if it is could you provide the address to me?). I imagine she just must feel in many ways as I do; that she’s been completely put through the mangle.
You’re right in your recounting of her hospital’s head psychiatrist’s words. So much of it is sort of a treatment-via-litmus-test approach.
And of course you’re also very right about the healing. And I did so much of this for so many years on my own that I have become very self-aware as to triggers, even often in my manias. I’m grateful for that. Very grateful. But there is also a vast land between healing and becoming functioning. Which is a whole other topic for a different time!
Thank you for your insight. I am very, very appreciative.
Her blog is indeed public, Ruby. Here it is: http://lamentsandlullabies.wordpress.com/
Also, I will be blogging this week once again on my experience on being a caregiver, this time around on triggers, anger, etc. I would like to link towards your blog as I find your story inspirational (you and three other bloggers actually). Would you be comfortable with me doing so?
Thank you for the link, I hadn’t found her in my journeys looking at blogs. And yes, please do link to me, I would be more than comfortable, I would be honored. I will look out for it. 🙂
OK, I can relate to this. Does my label define what’s in my jelly jar? Does my jelly jar have to always stay the same size? Does it necessarily have to contain only one kind of jelly, or can the labels on the outside, describing what’s inside, grow to be so many that you can only read the most recent one? What if my label reads something I don’t like, and I peel it off-will the jar still contain what the label used to say? This is an excellent metaphor for thinking about these things that I think about all the time. Thank you!
I think the way I see it is more that what’s in your jelly jar should dictate the label slapped onto it. With time it should, at least one would hope this would be so. And then the point is to shed the label, because you aren’t a jelly jar, you’re a wonderful woman with more than just jelly inside you.
And if you peel off the label, the jelly jar will contain all the admixtures you have made of your jelly self since you were born. Jars can be incorrectly labeled, and jars can have labels that don’t begin to cover all the lovely nuances and subtleties of what they contain. You don’t ever see a jam labeled ‘A tart, robust, delightfully flavored blackberry, with hints of the bright sun that nourished it and the amazingly full bush it originated on.’
I’d snatch that jar up in a second! Maybe I’m on to something. . .
“Must be jelly ’cause jam don’t shake like that!”
😀 I like that!
I’ve never really given much thought to the meaning of my label. Bipolar disorder II, huh? To me, it means that I have certain symptoms of a disorder that deregulates my moods, some of my bodily functions, and can be incapacitating at times. It means that certain aspects of myself that I used to attribute to fatal personality flaws are actually symptomatic of bipolar disorder. They are not me, but only a part of me, and I’m thankful for that.
I think more than anything, it means that I am sensitive. In Doctor Who’s “Vincent and the Doctor”, The Doctor described Vincent as being “fragile”. I wouldn’t call myself fragile in a certain sense, but in another, I can. However, unlike a vase that falls from a certain height, my shattering is not beyond redemption. I do not have the need to discard the pieces, instead I rebuild, bigger, better, stronger. People may say sensitivity is a bad thing, especially in today’s society. However, I would disagree. Yes, it cause psychic harm, but wounds heal, and we learn how to protect ourselves just enough so that we aren’t completely emotionless and cut off from the rest of the world. I like being sensitive. I like “feeling”. I think I have a certain advantage in that respect.
When I was originally diagnosed, as I’ve mentioned before, it was a relief. It provided an explanation for a lot of things, some of which I can’t really describe. It was the answer to my feeling that I was desperately flawed, beyond redemption, and doomed to live in a hell of my own creation. Because I really did feel as if I had done it all to myself.
In time, there were certain aspects of BP II that were hard to accept. The fact that I would have to be medicated, with adjustments to my medication, for my entire life was disturbing. Finding a way to make lifestyle adjustments, regulating my own eating, sleeping, waking, etc was also a task. Living in the constant fear that things were going to get worse, or that I would find myself in a very bad place again – that was the biggest one. Is this going to get worse? Doctors can’t tell you. For some, it gets better with treatment over time. In others, well, it just gets worse, and it becomes a point of making the illness manageable.
Have I come to peace with all of it? Mostly. I take it one thing at a time. Recently, I was smacked out of stable state, and I fell hard. I mourn the loss of that stable state, and that miniscule promise that I might be able to live my life mostly symptom free. But, I know I need to find acceptable levels of functionality within my states, and not just sit here hoping that I will be able to get back to that stable state, where everything was easier. And most of all, I need to accept the fact that there will be moments where I will not be at the same level of functioning. My bar needs to be adjusted.
I think I have incorporated into my life as well as I can at the moment. My mental health differences and my life are ever changing, and each needs different levels of attention and integration with one another.
Okay, that really only applies to my private life. In my professional life, I try to make my mental health differences work for me. I don’t give it a name, but I realize that there are some unique strengths that come with each state. Depression gives me the ability to focus on one task and see each detail in focus. Usually, that is bad when I focus the lens at myself, as everything is magnified. But, when it comes to bettering things around me, the function of my work, the structure of my classes, etc, it works well. Hypomania is great for the performance and socialization aspect of my job. The only problem is when I am not in a good place, I can’t seem to shake it at the door, and I get nervous that people start to notice.
In my personal life, as in friends, family etc? This is not just bipolar disorder at work here. I have endured years of traumatic experience with people. I do not make friends easily. I do not lend my loyalties lightly. I am suspicious of ulterior motives. Sadly, I am not being paranoid. I am mostly right about these things.
Where the function of bipolar disorder comes in is this. I hold people at an arm’s length. First, I do so because I do not want them to harm me accidentally or otherwise when I am in a state. Second, I do so because I do not want to harm them. I do not want to complicate an otherwise decent, polite, nice friendship with my moods. So, I just don’t. Apologies only go so far. And many people cannot understand that some things are beyond my control. It just is, as hard as I work at it. And finally, I do not want to be someone elses burden or responsibility. That’s it. It complicates relationships to the point where I don’t even want to engage in them. I’d rather have them say a nice hello, we exchange cute anecdotes about our weekends, and that’s it.
Masterfully written, Lulu! Thank you for this. It expresses so much of what my own experience is like, in some ways. I especially appreciated your metaphors around rebuilding what is shattered. I don’t think I’ve done such a wonderful job at it myself yet, but I’m still trying.
Rebuilding is hard, even on a small scale. You know how sometimes we let things get left behind, a chore, a task, an errand – something small like that. In time, all of those left behinds start adding up, and before I know it, I’m eyeball deep in it. And things start to lose their proper function. Everything needs maintenance, and I’m not always up to the task.
For instance, I have an abundance of paperwork that needs taken care of. That’s for my medical, T.D.’s medical, T.D’s special services, a couple of bills, C.S’s insurance to pay out for his medical bills, etc. At the moment, there are more pressing matters. My house is constantly in a state of “natural” disaster, I am working feverishly at a curriculum for both day school and the potential summer program hire. Unless they find someone on the outside, it’s likely that I will be hired. I’m trying not to put all of my eggs in that basket, because I may end up disappointed and unemployed.
So, on a larger scale, that makes things ever harder. That’s why I’m so resistant to large scale changes in my life, job changes, lifestyle changes, etc. The adjustment period puts everything in this awful, overwhelmingly chaotic state. I don’t know how some people manage. But, I applaud them.
You’ve put this so beautifully, Lulu. I can’t speak to all of the aspects you have covered, but I think it’s wonderful, it’s really such a comfort to me to read how my friends have placed this whole idea in their lives.
And you make such a good point that in pretty much all aspects of life, it’s not just the label that’s in play. There are a million other things which affect it, and vice versa.
I know the torment of the label at times. About a week or two ago, I sat on my bed and cried. But, it was different this time. For the first time, I found myself screaming, “Why am I like this? God, why can’t I just be normal and have a normal life?!” It was the first, and so far, only time since my diagnosis that I couldn’t seem to reconcile it.
I went through the typical steps. Why me? What did I do that was so horrible to deserve this? (I don’t ever want to attempt to answer that. That is a Pandora’s box I don’t want to go near). The fact of the matter is this. I am not going to pretend it wasn’t always like this, because in one way or another, it has been. I never ask the questions like, “Why am I so short?” Or “Why am I female?” Both have their drawbacks. This is how I was born, just like those other things.
It is part of my genetic makeup. And i do my best everyday to remind myself that I wasn’t dealt a completely bad hand. This has given me things I might not otherwise be blessed with. And that’s that.
But for one moment, I was hit with something people struggle with every moment they live. And I understand their laments. Reconciling that is the only way to come to peace with it. That’s why I want to help as many people as I can do so.
I remember the “why can’t I be normal” anger/anguish days. The bitterness over swallowing a pill everyday to be “normal” – and even that didn’t work, they were the wrong pills!
Those days were a really long time ago. Eventually when I was less depressed I realized that the fact that I can do as much to stabilize myself as I can is an enormous blessing. Not everyone is so fortunate.
It was an odd thing for me. Up until that momentary breakdown, I have always accepted this as the way I was. In fact, diagnosis was a relief. I never questioned it, and it was never a problem. But, one day, I was so overwhelmed with myself and my lack of functioning and I just lost it. I have never lashed out at God before. I remember the story of Job, though I’m not sure of it’s historical accuracy. I know the message, and in a way, though I’m not entirely Christian, I do incorporate it into my life. We suffer so that we learn lessons. We can’t place blame.
But, there I was, just so incredibly overwhelmed that I did it. I don’t have to ask those questions like, “Why me?” I know the answer to that. But I did anyway.
As time goes on and my grandmother’s health and mental state fails some more, it is becoming increasingly apparent to other family members that I am not the only one afflicted. My mother’s exact words last night were, “I had always kind of thought it had come from your father.” (Meaning the diagnoses of her son, her daughter, and her grandson) “But, now, I’m starting to really wonder.”
I joked, “Crazy finds crazy.” (Meaning my grandparents, my parents, and my marriage) “It’s like there is some kind of magnetism. I wouldn’t doubt that there is disorder dotted all along our family.”
But, another story for another day.
I understand why you would go through moments like that, very much so. I’m again (and unsurprisingly) unusual, in the respect that I have never have asked ‘why?’ I’ve been angry, and I’ve hated what this has put me through, but honestly, the why never came into it for me.
I think that’s probably because a long time ago, I developed a mentality about everything in my life. I stopped asking why. I realized that for me it was futile and fruitless and frustrating and all around self-defeating. Things are what they are, it doesn’t matter why. The only thing that matters is how I choose to accept or deny their reality and deal – or refuse to deal – with them. Now, obviously this doesn’t apply to choices and decisions on things that happened that I could have controlled: relationships, life choices, etc. But even with those it’s more of a calm, dispassionate, almost surgically precise examination of what went wrong and/or right, and how to do and/or keep from doing it in the present and the future.
I think it’s wonderful that you have taken something distressing to you and turned it for the good. You want to help people who struggle – and maybe that’s the answer to your why right there.
This says to me that you have risen to a very high spiritual level. Letting go of the “why” and just not going to the existential angst part leaves space in our lives for trying on different coping mechanisms, health-building strategies, etc. But you know, there are still days when I ask G-d, why in the world did you plunk me down intoTHIS body-mind-spirit? Oh yeah. It’s because I’m supposed to take it and make something beautiful out of it. Thanks, sometimes I forget.
I’ve always known that I was well suited and destined to turn my life, my mistakes, into something that could benefit others. It’s a waste, for me, to suffer for the sake of suffering alone. Maybe that is the answer. But, in the meantime, I’ll happily help children navigate their way through their childhood into a fruitful adulthood.
A few weeks ago I said I finally have to take my depression seriously. I was hiding it for years.I functioned as normal as possible. I could do that. It’s my kind of (atypical) depression. It has been my strength and my pitfall. I’m someone with a lot of capacities, communication skills etc. That’s the outside. And most of time the inside too. But in the mean time there’s that black feeling inside. A feeling taking your energy away.
In the past months I had to change ad-meds, due to physical reasons. Complicated and potentially dangerous meds, accompanied by a complicated diet. I had to be hospitalized for that. Due to those meds and its consequences I can’t deny my diagnosis anymore. And it’s ok. Why should I? Not that a label a or b is important. But it’s a kind of relief, looking at yourself and being honest. It doesn’t change the/ my world/ me. But maybe it makes it more relaxed.
Wow, it sounds like you have had a really rough road in having to come to terms with your depression. But if you’re functioning well now, and if has ‘relaxed’ you and maybe lifted some of the burden that comes with trying to hide it, then I would think it was worth it. And, as you say, label a or label b really isn’t so important to you, ultimately. Thanks for this response, and I hope you are well.
As a scientists, labels are really important to me. Science, at its heart, is about classifying and categorizing the world in order to better understand it. It’s hard for me to think otherwise about it, though I know the problems with that point of view as well. I’m not really a post-positivist, after all – I’m a pragmatist. And from a pragmatist point of view, if a label is helpful, then it’s helpful. If it’s not, then why bother?
For me, the labels have been helpful. They’ve let me learn more about and better understand myself, which has brought a lot of healing and peace. They’ve finally gotten me the right treatment; before the bipolar label, that just wasn’t happening and I was really suffering. They let me find and communicate with others who face similar challenges, or who don’t. I’ve really enjoyed that.
At the same time, the handwritten labels on my jelly jars (yep, I do homemade preserves) don’t include the ingredients. I don’t do store-bought jelly, so all that is listed is the final concoction. I think that’s the difference between types of jelly. Mine are holistic. The regulated sort in the grocery store are atomistic. Each has their place.
I don’t necessary like atomistic labels; most jelly jars bearing them are chock-full of extraneous stuff besides fruit juice, sugar and pectin (the only essential ingredients for jelly.) On those labels, I would be a flavor that includes the ingredients: bipolar disorder, ADD, child of the 80’s, broken family, child-free by choice, perpetual student, former musician, failed mathematician, accomplished knitter, etc… Some of those are (sometimes) useful to know, others are extraneous and don’t really matter.
The holistic label for my homemade jelly jar would read: “DeeDee” and most of the time, that’s all that anyone really needs to know.
I like this. You’ve taken the good of the labels without being sucked down by the potential for bad. I think that having a scientific brain perhaps allows you to think on the fact that the labels are just a way of translating certain things about you that are you, not the other way around. And they have obviously pointed you to the treatment you needed, the treatment that has made life better for you, and that is absolutely a wonderful function for them, DeeDee. That’s the best use I can think of. 🙂
You know a little about my feelings for labels because no one seems to want to diagnose me with anything. I have been diagnosed with social anxiety and generalized anxiety, but there’s another problem I have, and no one knows what it is.
My feelings about all of this conflict somewhat. I am glad to have the social anxiety diagnosis because it validates what I’d thought for most of my life. Even as a child, I knew may that I didn’t have mere “shyness.” But when I would try to bring up my concerns to my parents, they would say it was childhood shyness I’d get over. Sometimes they’d tell me it was only a problem because I thought it was so–in other words, if I hadn’t dwelt on my fear when around others, it wouldn’t have built itself up as a big to-do. If I just accepted it was shyness I would grow out of, it would happen. Even now, sometimes I wonder if they weren’t right. The diagnosis also helps with this because it helps me understand why, no matter how hard I tried, I could never get over my fear when around people. I forced myself into all sorts of activities to try to make myself overcome it because I thought exposure might make things easier. It does to a slight extent, but I’m still always afraid around people. No matter what I do, I will always be like that, so I’ve got to learn how to cope with the social anxiety rather than trying to find a way to eliminate it.
My conflicting attitude comes in more with the undiagnosed problems. On one hand, it makes me wonder if sometimes I am being melodramatic and don’t have real problems. At the same time, it is clear I have a definite problem. Several symptoms of different conditions apply to me, and the combination is whatever my problem is. But I don’t have enough of any one condition to be diagnosed with it. My pdoc is trying to use my responses to medications to reach some sort of diagnosis, if possible. The theory is that whatever corresponds to what the medication is used for will be what I probably have.
At any rate, I think diagnoses are useful as tools for understanding what you’re going through, but there’s danger in relying too much on them. I can’t be the only one out there who doesn’t have a clear diagnosis. Relying too much on labels would lead people to easily dismiss the problems of those people. Well, they don’t fit in any one category, so there’s nothing wrong with them. It’s just their personality or them being melodramatic. No, that’s not how it works. You don’t have to have a diagnosis to have an issue stemming from mental health.
I can really identify with feeling validated by a label. It’s as though someone has said, although this is all in your head, it’s not all in your head. When you don’t have a label that validates your suffering, you suffer even more with self-doubt. The “treat symptoms not disease and don’t bother with labels” philosophy really bugs me because it provides no closure or opportunity for acceptance to a person who often needs it badly.
I have always tested evenly for introversion and extroversion on Myers Briggs Type Indicators. I don’t know anyone else who scores that way. I always found that confusing until I was diagnosed bipolar. Now it makes perfect sense!
I am the same way with Myers Briggs. I test evenly between Introversion and Extroversion on it. If I’m in an episode, it might push me slightly in either direction. It’s interesting. Most people think that personality is static, and I have usually been among that group. People don’t really change, they just become more so in one way or another. However, I have noticed that some people in the bipolar spectrum have the ability to sit on that line and lean either way depending on the episode.
I think you touch on something I have found to be extremely important through various times in my life (and I know this is common of so many people who have mental health diagnoses) – the validation a label can give you. It helps in so many respects to have someone on the outside, someone who ‘knows’ what they’re talking about, tell you, “You’re absolutely right to feel that things for you are beyond the scope of what is considered ‘normal’; stuff that most everyone deals with throughout their lives and just works through.”
I had this kind of experience in reactions from various psychiatrists lately – without going into long detail, just getting a response essentially of, ‘Yeah, even for someone with bipolar and all sorts of anxiety disorders, you’re still a very unusual case.’ It no longer matters to me nine-and-three-quarters days out of ten, but there are the odd moments where it actually makes me feel less crazy. It’s not all in my head (okay, well technically. . . 😉 ).
As far as what hasn’t yet been made clear to you through formal diagnosis, you are not at all alone in that one! So many people are misdiagnosed, re-diagnosed, undiagnosed with one particular and diagnosed with another. I have someone in my life who likes to remind me, “There’s a reason they call it ‘practicing’ medicine.” And I think this is especially true with psychiatry.
Laura says: Letting go of the “why” and just not going to the existential angst part leaves space in our lives for trying on different coping mechanisms, health-building strategies, etc.
Thank you. Again, there wasn’t a why before that moment. It coincided with a moment that I had felt like a failure of a mother. There is no worse feeling in the world, honestly. I never had to ask why, because it just was. I knew I was different, and although it bothered me for quite some time, mostly because I didn’t have an answer of what was different about me, I didn’t question the whys.
There is no why. Maybe there is, but that’s a picture too large for me to even imagine. That is my life, with all of it’s twists and turns. No one can see their own life path, and therefore, no one can answer those big questions. Maybe not even God can answer them. It’s just part of the design. And I’m not even going to say that it’s a design flaw. If records existed in my family tree predating the 1800’s, and modern medicine were around to have a say so, I’m sure I’d have a long history of affected family members. In the times before adequate medical care, these people survived, without treatment. There is some rhyme and reason for that.
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