Diagnosis....taken from me?

I feel so lost. Confused. Empty. Invisible.

You see, I got out of the psychiatric unit on Monday after a ten day hospitalization. I went in with severe emotional and physical pain, basically a manic crisis after acting on self-injurious impulses. I had questioned if Bipolar was at play, and certainly brought this up in discussion with staff, but after a few days the height of energy had dissipated enough (after being ongoing for approx. ten days) for me to reason, "No, perhaps this was just another extreme-to-me Borderline episode."

It caught my attention quite quickly that the doctor was hesitant in labeling me with Borderline Personality Disorder. I specifically mentioned that I didn't want to be collecting diagnoses like trading cards, but wanted what would match my treatment so I knew the steps to take towards healing.

When discussing my diagnoses, he brought up various possibilities - possible Bipolar (II or NOS), Dysthymia, Generalized Anxiety Disorder, Panic Disorder...and when we got through the list I asked "and what about Borderline?" because I have been given the diagnosis - six months ago. After this he was so specific to talk of my symptoms as "traits of Borderline".

I felt invalidated and unheard. I was told more than once that I over-identify myself with the diagnosis (well, what do you expect of someone with identity disturbance?!) It's the only thing that's made total sense to my experiences, and validated in that this is serious enough to need attention when I feel like a burden to everyone...

Come time of my discharge my diagnoses came up as "Bipolar Disorder, Unspecified" (due to the rapid-cycling of mania and depression - every ten days or so) and "Cluster B Personality Disorder".
I laughed bitterly like, "So, Borderline that you refuse to label because I struggle with over-identification with it."

I feel sort of left out to the cold with this one. Abandoned. It's been the only sense of normalcy for me in having the diagnosis because at least with it, I knew how to seek help a little more...but it's like, now what? I want to continue calling it Borderline Personality Disorder because it is what I have known this as, and meet the criteria with the exception that drug use and promiscuity aren't part of my struggle (my impulsivity and risky behaviors aren't as extreme, but all the same it's been agreed upon that if I don't get help, I could act out and commit suicide, intentionally or not...) At the same time, I don't want to be self-diagnosing because, again, I have been given the diagnosis in the not-so-distant past!

*sigh* I don't know. I feel like I'm drowning in a void, don't know who I am, and am lost in a disconnect from reality. It's cold and I'm dark. I struggle because I didn't feel ready to leave the unit, but they believed that the only way for me to be connected with reality was to be in reality...working in therapy and DBT group...and learning to control my impulses once I started getting a better grasp on that from within the hospital setting - and that's certainly not perfect as I landed myself in the Intensive Care Area twice, but otherwise slowly, one moment at a time...

I'm not sure what I'm looking for in this. Thanks for taking time to read, I guess. Just that I need to get this out, because I do feel awful that I don't know who I am or where to go from here...I just want these things gone...I understand that diagnoses aren't meant to be 'forever labels' but for right now, what I'm struggling with, it's the only one that's given me the fullest understanding as to why these things are as they are.
~ Wolfy

it's been my experience that a lot of doctors are hesitant to label people with bpd because it's so heavily stigmatized, they seem to think it's better to not have the label even though that makes it difficult to get the correct treatment. he might be one of those doctors who considers it a "wastebasket diagnosis", or doesn't even believe it exists at all. especially if he's not a particularly young guy.

it's a really unfortunate occurrence, and continues to shock me how common of an attitude this is.

sorry to hear about your experience.

littlearcher wrote:hugs wolfesque, i am sorry that you are feeling so lost.

i know it's hard not to identify with certain labels and it sounds like there is a treatment plan in place that includes dbt and therapy.

how are you feeling about starting on that? are you open to giving it a shot?

more hugs to you <3

*hugs* Thank you, Archer.

I am definitely open to giving it a shot, especially since DBT is known to help alleviate the suffering of Borderline when skills are actively worked on. Actually, my first Monday in the psych unit was supposed to be my starting day with the DBT group, and now it's going to be this coming Monday...

Thank you for the validation. <3

rainbow_sprinkles wrote:it's been my experience that a lot of doctors are hesitant to label people with bpd because it's so heavily stigmatized, they seem to think it's better to not have the label even though that makes it difficult to get the correct treatment. he might be one of those doctors who considers it a "wastebasket diagnosis", or doesn't even believe it exists at all. especially if he's not a particularly young guy.

it's a really unfortunate occurrence, and continues to shock me how common of an attitude this is.

sorry to hear about your experience.

Yes, indeed. I know for a fact this particular doctor does give the BPD diagnosis, because a patient who became a friend showed me it on her discharge papers before she left. Which I think in my case goes back to what I mentioned on drug use and promiscuity (as well as that I don't have significant past abuse to my current knowledge).

I agree, though. I don't really know all of what the doctor believes about Borderline outside of the fact that it appears my symptoms aren't severe enough to him to be given the diagnosis. Go through the diagnostic criteria, however, and all nine of them are something familiar to my experience. "Mild" as it may be, they cause me extreme distress, and would be plenty of evidence for the diagnosis - as it was given in the past. Yet because I don't have those "extreme" areas, and I "over-identify" with the diagnosis, I was simply diagnosed with the "Cluster B Personality Disorder", which I believe was probably the doctor's way of clinically saying, "Traits of Borderline" and appeasing me in that there is something going on...

At any rate, thank you for validating the concerns I have. <3

Sorry you're going through this. I totally understand, a similar thing happened to me and I felt the same. It's hard to explain it without people brushing it off as attention seeking or you wanting to have BPD itself for some reason, rather than wanting a diagnosis.

I can see why doctors avoid it because of the stigma, not wanting to label people, etc, but I don't really think it's their right to decide whether that's the right thing for everyone or not. There's loads of reasons for preferring to have a diagnosis and it does feel like they're trivializing your problems if they take it away.

I suppose it's not for me to say since I'm not a professional, but I'd guess that the doctor is probably just reluctant to keep the diagnosis floating around. I'm sure it'd be wrong on their part if it was about you not having substance abuse issues or not being promiscuous... there's plenty of people with BPD who don't have those traits. Not to mention there's other impulsive/self-damaging behaviours that are equivalent to those and you don't need to meet all of the criteria anyway.

I really hope you manage to work this out, it's a horrible feeling and isn't invalid at all. Fingers crossed for you.

Nora

I understand how you feel. When I got BPD, it made SO much sense. I felt like I fit somewhere. I felt like I had a plan for once, and I could have specified treatment instead of "oh, let's do this...oh wait, no, this...well, that didn't work..., etc."

Really, what I think it comes down to, is the doctor/therapist. People perceive things differently. My first therapist noted my file as depression with access to borderline personality disorder. (I have traits, in other words.) But he never told me about the BPD part, at least not right away. Then another therapist told me I the disorder, not just traits of it. Then one psychiatrist told me I had mood disorder NOS with traits of BPD. Then my current psychiatrist, who gave me the best evidence based on my behavior, said BP II. You can ask ten different people, and you might get the same answer a couple of times, and you might get a bunch of random answers. You just never know.

What's important is this: Who has the best treatment plan in place for you? Who can help you succeed? My psychiatrist told me I'm BP II, which shocked and scared me, but he also has the best idea of what meds will help me. Whether or not I have the actual chemical imbalance that causes bipolar disorder, I don't know. But, like you said, it helped me understand my behavior and find direction in treatment.

When people ask why I see a psych, I do say, "I have bipolar disorder". But I NEVER say "I am bipolar." I'm NOT bipolar. I'm blonde. I'm tall. I'm spastic sometimes. I'm high-strung. I'm funny. I'm bitter, and I'm tired, and I'm unpredictable sometimes. But I am NOT bipolar. I live with bipolar disorder, I have bipolar disorder, I suffer from bipolar disorder, whatever. But I'm NOT bipolar.

Just as someone with cancer would not say "I am cancer" or someone with diabetes would not say "I am diabetes", you are NOT borderline, and you are NOT bipolar. I am a grammar/diction guru, and I even thought that the change of phrasing was absurd at first. Who cares? I'm bipolar versus I have bipolar disorder? Really? But I started saying it the way my therapist told me, and it's helped. Because I, too, was attached to my diagnoses - all of them - and I hated when someone came up with something new. But you do have to detach from it to a point, and realize that a diagnosis is meant to direct treatment, not change your identity.

It's okay and expected that you would be frustrated with people throwing around diagnoses like a baseball, but just try to focus on the treatment aspect of it. Also understand that bipolar and borderline get mixed up quite a bit. They're very, very close except people with bipolar do not necessarily have attachment/abandonment issues, and therefore don't have issues with splitting and all that. So, you might end up going back and forth each time you see a new doc.

nora1990 wrote:Sorry you're going through this. I totally understand, a similar thing happened to me and I felt the same. It's hard to explain it without people brushing it off as attention seeking or you wanting to have BPD itself for some reason, rather than wanting a diagnosis.

I can see why doctors avoid it because of the stigma, not wanting to label people, etc, but I don't really think it's their right to decide whether that's the right thing for everyone or not. There's loads of reasons for preferring to have a diagnosis and it does feel like they're trivializing your problems if they take it away.

I suppose it's not for me to say since I'm not a professional, but I'd guess that the doctor is probably just reluctant to keep the diagnosis floating around. I'm sure it'd be wrong on their part if it was about you not having substance abuse issues or not being promiscuous... there's plenty of people with BPD who don't have those traits. Not to mention there's other impulsive/self-damaging behaviours that are equivalent to those and you don't need to meet all of the criteria anyway.

I really hope you manage to work this out, it's a horrible feeling and isn't invalid at all. Fingers crossed for you.

Nora

Thank you, Nora. I agree with your guesstimate there, that the doctor simply does not want to have diagnoses so much at play as he (and others working with me towards recovery) want to have the best options available for treatment. As he explained to me, my issues are primarily behavioral, not chemical, in these regards. As a result, he followed through what he believed was the best approach, in that I seek opportunities of mindfulness, slow my impulses, take a couple medications to help ease what he called my "anxious energy", and work through DBT skills. The day I was discharged, he even made mention how it probably feels I am being abandoned by them (ding, ding, ding...) but that in getting out in reality, I would become more established in reality again.

To that, I can agree. And I agree that I'm definitely on the Borderline spectrum and have been for many years, it's just that now I've had the diagnosis itself taken away and replaced with something that's - in my eyes - lesser.

That's not to make light of anyone with PDNOS, just that I had the full diagnosis, and right now I feel my symptoms are worse now than they were six months ago, so I'm confused as to reasons behind taking the diagnosis away.

Like, I understand the over-identifying of it, and I've had times where I've slipped into saying things in regards to "I'm Borderline" rather than "I have Borderline", but as an overall I do understand that it is not my identity. It's just the closest thing to sense I have right now.

gratteciel wrote:I understand how you feel. When I got BPD, it made SO much sense. I felt like I fit somewhere. I felt like I had a plan for once, and I could have specified treatment instead of "oh, let's do this...oh wait, no, this...well, that didn't work..., etc."

Really, what I think it comes down to, is the doctor/therapist. People perceive things differently. My first therapist noted my file as depression with access to borderline personality disorder. (I have traits, in other words.) But he never told me about the BPD part, at least not right away. Then another therapist told me I the disorder, not just traits of it. Then one psychiatrist told me I had mood disorder NOS with traits of BPD. Then my current psychiatrist, who gave me the best evidence based on my behavior, said BP II. You can ask ten different people, and you might get the same answer a couple of times, and you might get a bunch of random answers. You just never know.

What's important is this: Who has the best treatment plan in place for you? Who can help you succeed? My psychiatrist told me I'm BP II, which shocked and scared me, but he also has the best idea of what meds will help me. Whether or not I have the actual chemical imbalance that causes bipolar disorder, I don't know. But, like you said, it helped me understand my behavior and find direction in treatment.

When people ask why I see a psych, I do say, "I have bipolar disorder". But I NEVER say "I am bipolar." I'm NOT bipolar. I'm blonde. I'm tall. I'm spastic sometimes. I'm high-strung. I'm funny. I'm bitter, and I'm tired, and I'm unpredictable sometimes. But I am NOT bipolar. I live with bipolar disorder, I have bipolar disorder, I suffer from bipolar disorder, whatever. But I'm NOT bipolar.

Just as someone with cancer would not say "I am cancer" or someone with diabetes would not say "I am diabetes", you are NOT borderline, and you are NOT bipolar. I am a grammar/diction guru, and I even thought that the change of phrasing was absurd at first. Who cares? I'm bipolar versus I have bipolar disorder? Really? But I started saying it the way my therapist told me, and it's helped. Because I, too, was attached to my diagnoses - all of them - and I hated when someone came up with something new. But you do have to detach from it to a point, and realize that a diagnosis is meant to direct treatment, not change your identity.

It's okay and expected that you would be frustrated with people throwing around diagnoses like a baseball, but just try to focus on the treatment aspect of it. Also understand that bipolar and borderline get mixed up quite a bit. They're very, very close except people with bipolar do not necessarily have attachment/abandonment issues, and therefore don't have issues with splitting and all that. So, you might end up going back and forth each time you see a new doc.

Gratteciel, thank you! Your depth of response is truly appreciated. I agree that it helped having the diagnosis so I knew exactly where to go. I guess nothing has really changed in that regard, just that I struggle with that I obviously disagree with the doctor in that I feel my diagnosis really ought to still be Borderline when my symptoms now are worse than they were when I was first diagnosed.

As to identifying, "I am _____" versus "I have _____", this is something I have worked on quite a bit over the last few years. I always used to tell people I was a cutter back when I was in high school and even some in college. Now it's along the lines of "I struggle with self-injury." I've struggled with the labeling of it ("I'm so Borderline right now!") more of a light of explanation. But like I said to Nora, there are times when I slip and catch myself saying such things, even though I know a label is not my identity. That's why I have the quote in my signature. It's to always remind me of that.

Even now my family continues to call me a cutter. If it's between that and calling me Borderline, I'd prefer labeling the latter simply so it's taken as a collective whole of symptoms, not just the one. No, I am not Borderline, just on the spectrum, in the very least. Ideally, no one would be labeling anything in that way. I might not know who I am, but I am not my mental illness; it is a part of me, but not all of me.

Now that I've started to settle a bit from the diagnoses themselves, I am working towards focus on the treatment. It's not that I don't care about the diagnoses, but regardless of what they are, my symptoms are said to be behavioral, maladaptive, and self-destructive. And I am said to be intelligent, which points all involved parties to believe that DBT will be effective for me as I take time to process through things and learn. I might be resistant to change, but I do truly want to make the effort for those changes to be made, as hard as it will be.

I agree that the diagnosis itself helps in finding what treatment is best to work with. I've heard it said that Borderline and Bipolar operate on the same spectrum, so it's understandable that they could be interchangeable in regards to what I'm going through. Ultimately, I just want to focus on getting the help I need so that I can later go back and help others, too.

I've very much started to slip into that mentality of making myself feel like everything I do as being identified by my diagnosis. My doctor too was very reluctant to give me specific one until she had lots of time to figure what it is. She said a small chance of Atypical Bi-polar, or early signs of schizophrenia, but heavily suspected BPD. After doing a lot of self research, as someone else said above, it almost felt like...joy. The symptoms were filling in like puzzle pieces to my life's behavior.

I always called having a cutting problem "Self-Mutilation". I never understood why I did it like that.

As to identifying, "I am _____" versus "I have _____", this is something I have worked on quite a bit over the last few years. I always used to tell people I was a cutter back when I was in high school and even some in college. Now it's along the lines of "I struggle with self-injury." I've struggled with the labeling of it ("I'm so Borderline right now!") more of a light of explanation. But like I said to Nora, there are times when I slip and catch myself saying such things, even though I know a label is not my identity. That's why I have the quote in my signature. It's to always remind me of that.

I've never actually thought about that. I was misdiagnosed with ADHD for the last ten years (and was treated as such) and after a hospitalization it was realized that was very wrong. I've always said I am borderline. I've made it like this identity because I feel like I have a plan now. (Again, someone else said something simliar above.)

I do hope you're feeling better now though. You're not invisible. I often think that too and people surprise me in many ways showing me otherwise. I wish for the best with your first DBT group. I have yet to have one so I would love to hear about it and how you felt during the experience.

First time here. I've rather enjoyed everything I've read. (I mean, enjoyed in the sense of helpful, of course.)

Wolfesque wrote:As to identifying, "I am _____" versus "I have _____", this is something I have worked on quite a bit over the last few years. I always used to tell people I was a cutter back when I was in high school and even some in college. Now it's along the lines of "I struggle with self-injury." I've struggled with the labeling of it ("I'm so Borderline right now!") more of a light of explanation. But like I said to Nora, there are times when I slip and catch myself saying such things, even though I know a label is not my identity. That's why I have the quote in my signature. It's to always remind me of that.

I do hope you're feeling better. You're not invisible. I've often thought that and when you put some of your life out there some people may surprise you stepping forward. I've often always called it "I'm borderline" compared to "I have borderline. I've actually never given it much thought until today. I read up above somewhere that finally having a label kind of gave them a game plan instead of just feeling like there was nothing they could do. I fall into that category. After given a "You most likely have this" from my psych, (the other two were small chances of atypical bipolar or early signs of schizophrenia), I felt like I suddenly had a game plan after being misdiagnosed as ADHD for the ten years prior to my hospitalization and having medication for it as such. (I quit the meds several years ago and actually felt better. First sign ADHD was incorrect.)

I don't blame the doctor for being hesitant, though they should never throw an option out completely if the symptoms are matching up. I understand your feeling of them wanting to be gone. It's a tough fight. But I do hope you're feeling better since you've been back.

Do you feel like you're drowing in a void because it feels like every day enough progress isn't being made and that you're a rubber band that's being stretched too much? That stress can start to lead to the thoughts of not wanting to have to deal with whatever problems we do have. (Is problems a bad word? I mean, complications sounds less...negative.)

Anyways, I would love to hear about your DBT therapy and your thoughts on it. I'm supposed to have my first one in a couple months as it's booked where I live apparently. Sorry if this seems a little random. I have no idea where to start with all the information on this page I just read. Haha;

OverlordRhode wrote:First time here. I've rather enjoyed everything I've read. (I mean, enjoyed in the sense of helpful, of course.)

Hey there, Rhode! Welcome to the forum. I'm pleased to hear this has been helpful to you in your journey with mental health and hopefully will be beneficial to you as it is with me in separating one's self from diagnoses.

I do hope you're feeling better. You're not invisible. I've often thought that and when you put some of your life out there some people may surprise you stepping forward. I've often always called it "I'm borderline" compared to "I have borderline. I've actually never given it much thought until today. I read up above somewhere that finally having a label kind of gave them a game plan instead of just feeling like there was nothing they could do. I fall into that category. After given a "You most likely have this" from my psych, (the other two were small chances of atypical bipolar or early signs of schizophrenia), I felt like I suddenly had a game plan after being misdiagnosed as ADHD for the ten years prior to my hospitalization and having medication for it as such. (I quit the meds several years ago and actually felt better. First sign ADHD was incorrect.)

Not entirely, but it comes and goes, as with everything else. The emptiness and growing desire for my impulsivity is high. I'm simply hanging on, clinging to every safety measure as all I can do.

Thank you, for validating that I am heard. Diagnosis does help, to know where to go from there, I think. I was diagnosed with ADHD as a child, and so often I look back and wonder if that was actually a precursor to any of the issues going on currently.

I don't blame the doctor for being hesitant, though they should never throw an option out completely if the symptoms are matching up. I understand your feeling of them wanting to be gone. It's a tough fight. But I do hope you're feeling better since you've been back.

Do you feel like you're drowing in a void because it feels like every day enough progress isn't being made and that you're a rubber band that's being stretched too much? That stress can start to lead to the thoughts of not wanting to have to deal with whatever problems we do have. (Is problems a bad word? I mean, complications sounds less...negative.)

Anyways, I would love to hear about your DBT therapy and your thoughts on it. I'm supposed to have my first one in a couple months as it's booked where I live apparently. Sorry if this seems a little random. I have no idea where to start with all the information on this page I just read. Haha;

Indeed, it kept coming up as "this isn't a diagnosis you should want." No, but it is one I have been given, so treat my concern with respect. That whole void thing though, yeah. I get that. I'm stretched and worn thin, and that's what landed me in the hospital.

Aw, you're fine. Hah! I'd love to share my experiences with it once I'm more familiarized with it. I know distress tolerance and mindfulness, in the very least, will be beneficial once I get into the practice of it all.

Wolf, I am glad to hear that you're working on the identity thing, and separating yourself. Even though I personally don't phrase it with "I am ____", I find myself thinking that I am, and telling myself that's all I'll amount to. All that to say that I struggle with it myself. It's hard. Especially when I feel obviously different from the people around me, and the only way for me to relate to anyone is to identify myself as bipolar.

Anyway, sorry for rambling.

Oh, but yes, I have always hated "I'm a cutter". Even when "I am bipolar" or "I am borderline" was okay, I HATED "I'm a cutter". It's almost like some sort of slur...I don't know. That's awful that your family says that to you. Perhaps they should re-frame their thinking to what you said. You struggle with self harm. Have you suggested that to them? Yeah, I guess I would prefer being called my diagnosis as opposed to one symptom, as well. "I'm borderline" sounds better than "I'm a cutter" for sure. And my logic would be that many people don't know what "borderline" even means, so they would probably be confused, not disturbed like they might be with the cutter idea.

Oh, definitely. I noticed my treatment didn't change much between the two. I mean, specific meds changed, but all of the meds treated the same thing, just in different ways. So, you haven't gone far. Besides, the people in the BP forum seem pretty cool. I haven't posted too much there because I got so used to the SI forum, but I like the BP forum too.