For well over a decade, and since my very first therapy session many moons ago, (aka JUST after the dinosaurs died out and at the time when there were Tyrannosaurus Rex bones still lying about EVERYWHERE after that rather inconvenient meteor), therapists and psychologists across the country have always said that there is “something” wrong with me. Obviously they have always known about my OCD, Eating Disorder and Depression, yet still many have insisted that there is “something else” lurking within me and playing general havoc with my brain.
I have always found this “something wrong” that nobody can put their finger on, (or any body part for that matter), to be rather confusing.
When I was 15 the it was banded about that this “thing” might be bipolar disorder, but after trial and error with a few medications, that suggestion was tidied away as well as all the others and I have tried my best to forget about it. I was doing pretty well with this forgetting thing in my opinion (I had placed the “there is something wrong with you that we do not understand” memory alongside Pythagorus’ theorem in the box of “things I no longer need to know after the age of 16”), but then my forgetting box was rudely ripped open again very recently.
If you have been following this blog for a while you may remember that I had an assessment with a new OCD service in October of last year, a three hour interrogation examining all of my mental health problems and experiences of the world throughout my life. I mentioned nothing of any extra “bonus” diagnosis that nobody was sure of, so for this reason I was surprised when the psychologist I was speaking to randomly asked if I had any other diagnoses, as yet again I was showing signs of this “something else”, that something possibly being a “personality disorder”. I didn’t mention this when I had the assessment all those months ago because I imagined it would go away like all those other conversations of mysterious mental health problems in the past.
When I was told that the OCD service may not be able to facilitate my care if I had a personality disorder and I may need to see another service first however, I was unable to forget it again and became increasingly frustrated. Here I was potentially having issues with receiving treatment because of a mysterious something that I wasn’t even diagnosed with, and it was at that point that I knew I needed answers.
Like I said in my “why I like being diagnosed with mental health problems” blog post a few weeks ago, I like having the labels and diagnoses of my conditions in black and white because it helps me to deal with them and means I know what enemy I should be fighting. If you want a full understanding of why I like being diagnosed with (NOT HAVING) mental health problems, then I fully recommend checking that post out before this one (Why I Like Being Diagnosed With Mental Health Problems – it really is a great read. Trust me it involves a picture of a monkey banging a gong and singing Bohemian Rhapsody), but as a brief summary for all those with an aversion to classic song performing primates, my argument was that I like being diagnosed with mental health problems because it is only when you name a problem and pin it down that you can figure out how to overcome it. It is useless for a person working in a garage to simply say “there is something wrong with your car” because then they can’t fix it. They need to specifically identify the issue that there is a gaping hole in the front tyre, as only when they know that, do they know where they start tinkering and what equipment they will need.
Consequently, after my OCD assessment, I went to each of the three therapists I see in turn and asked them to tell me if there was something wrong and if so, what the hell it was. I can’t remember who first brought it up, but rather quickly a condition (we will call it Penguin condition for the time being), was suggested as the answer to all the questions I have had over the years. From that suggestion I had many appointments discussing the condition and as instructed, I researched it, learnt about it, and I watched a DVD given to me by a therapist, of various people being interviewed about their experience of Penguin condition.
Of course I didn’t relate to every single person on the DVD nor did I agree with some of the explanations of Penguin condition online, but on the whole, when learning about it, something clicked. As I heard people talking about what it was like I was astonished to hear them basically describing things I do/have experienced in life, and although scared and not eager to add a new diagnosis to my list, I was at least a little relieved. Finally I wasn’t just “weird”, I had Penguin condition and maybe if I started dealing with it, things would improve across the board. Perhaps the underlying issue of Penguin condition was the reason for the OCD and eating disorder, perhaps none of the treatment has cured me yet because we were actually treating the wrong parts first, like trying to eat the chunks of brownie at the bottom of a sundae glass before you have tackled the ice cream piled on top of it (ALWAYS SAVE THE BROWNIE BITS FOR LAST. ALWAYS. THAT IS THE RULE. ICE CREAM FIRST, BROWNIES LATER).
For this reason I became eager for the diagnosis to be put in place so that I could finally know where I stood. As well as answering my need for answers I also wanted it made official so that future therapists or medical professionals would know the full story if ever reading my notes, without me having to always add into new introductions the explanatory “I know you have read my notes but just so you know Penguin disorder is also on there but it is not written down”. I wanted it in black and white to be neat, to be clear, and partly because when things are in black and white, they look a little more like a penguin without the beak.
Then, a few weeks ago, I had a session with my psychiatrist and it was decided that we would make it official and the diagnosis would go on my records. At first I was relieved, but then he started to warn me about the consequences of it being made official. Suddenly I wanted to forget all about it and fall back into blissful ignorance again.
Apparently this condition is one with a lot of stigma to it, stigma that can lead to some therapists refusing to see you if you have the diagnosis. This wasn’t really a problem for me. If a therapist isn’t going to see me because I have a certain mental health problem then clearly they aren’t a good therapist or a person that I want to associate with anyway, but the constant reinforcement of judgement that could potentially befall me freaked me out a bit. I am not ashamed of having mental health problems, I talk about them openly on the internet for this reason and to hopefully help others be less ashamed about their disorders, yet with Penguin condition I really was rather scared and embarressed. My psychiatrist said he could treat me for the condition and just not put it on my notes if I would prefer, yet as easy as that would be, I still felt uncomfortable. Yes I wouldn’t have the “shame” of being diagnosed with a condition that faces a lot of stigma, but on some level I would also be admitting that there was shame in the condition and that I should keep it on the down low which is not how I feel about any other mental health problem I have. I am a firm believer that if you have a problem, keeping it on the down low is only going to make it worse and will not raise any of the positive awareness that could potentially be spread with honesty. Nevertheless I am a little afraid, and so for now it is on my notes as “under revision” incase I change my mind by the next appointment and want it removed (apparently without the under revision bit this is something that once on your records, will not come off no matter how much scrubbing or Cilit Bang you apply. Bang and the dirt is gone? Yeah, but the disorder will still be there!).
I have a few days until my next appointment now, and by that next session I have to decide whether or not I want to specify that mysterious something wrong or just sweep it under the carpet again. As well as debating whether to let it on my medical notes I have been debating whether or not to bring it up or “come out” with it in my blog. Again, my initial reaction was no. Even my mum agreed that it might not be the best idea. If you google the condition or do any surface level research on it, people with this disorder are painted as crazed monsters who are unbearable to be around. Reading the articles even I admit that I started to think that I would never want anything to do with someone suffering from the condition, and that was when I made my decision to get over my fear, come clean and talk about it on my blog like I talk about everything else, regardless of whether anyone else is interested. If everyone thinks people with Penguin condition are dangerously insane, then I want to talk about it and I want to raise awareness of the fact that that is not the case and what the people with it are really like. As you can see I am still scared of saying it on here (hence the code name Penguin condition), as I do fear the judgement, but they say feel the fear and do it anyway, so here it goes.
My most recent mental heath update then? After all that waffle what has happened? Well dear friend, I have been diagnosed with Borderline Personality disorder. I am still exactly the same blogger you have been following for however long you have been, with exactly the same issues. It’s just that one of the hidden ones now has a name (sort of like when some women on TV seem to name one of their boobs…it is something that has always been there only now it can be addressed formally in a letter or serious conversation). As you can see this post is long enough as it is so I won’t go into what that means and what myths need debunking here, but for now I feel like telling you is a big enough step. (That said I know many people do not know what this disorder is or have many misconceptions so, before I can provide an explanation of my personal experience I have linked a PDF below from the charity “Mind” which I feel is the best and least stigmatised description around, so if you want to learn more, dear god please go there rather than to a general google search).
Maybe I will delete this post before I upload it but I hope I don’t, and if you are reading it then I guess I have been brave. Nobody should be ashamed of their mental health problems, and I for one am going to live by that, even if doing so is something that scares me right now.
Take care everyone x
Born without marbles 
Katie, I don’t think you should be afraid. Like you said, you like things to have a label. I have several friends with BPD and finding out they have BPD didn’t affect how I treated them at all. Of course, not everyone will be like that, but just think, if people in your life have loved you and accepted you thus far, why should three words change that? You’re still the same person! Keep going 🙂
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Aww thank you so much for this! Honestly that is so reassuring to hear and I am actually glad that I “came out” with it now! I hope other people I meet will be as understanding as you and you are right, if people accepted me before, why should three words ruin it all? Thank you so so much, this comment really helped me today. I hope you are having a lovely evening xx
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So so proud of you posting this – the fact that you didn’t want to goes to show how many taboos and false impressions need to be smashed! Hope this new diagnosis helps xxxx
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Thank you lovely! Ahh it is so nice to read this and be reassured that I made the right decision by being honest. You are wonderful. NOW ON WITH THE STIGMA DESTROYING xxx
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You should NEVER be ashamed of your illness. A lot of people suffer from this disorder and I don’t think anyone consider them “super crazy”. I don’t suffer from it, but if I did, I would be happy to see someone amazing like you who has it :). I was recently diagnosed with OCD and when I found out that you have it too I was quite relieved that I am not alone in it :). Your openness about your mental health really helped me 🙂 So thank you for being you 🙂
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I recommend watching Valerie Camai (https://www.youtube.com/user/valeriecamai/featured). I really look up to her, because she has BPD and it recovered from Anorexia 🙂 very inspirational
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OOh yay! I will do just that! I have followed several Youtubers with mental health problems but never one with BPD! The eating disorder thing is then a massive bonus on top! I will check her out! THANK YOU AGAIN FOR BEING FABULOUSLY FABULOUS IN YOUR FABULOUSNESS
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Well aren’t you a lovely person?! Good lord I can’t stop smiling. Not only have you made me feel like I made the right decision by being honest but you have made me feel less paranoid and afraid that everyone will now hate me and think I am some kind of maniac! Also what you said about me having OCD being a relief has made my year because it was wanting to make people feel less alone that made me start this blog in the first place. Gosh I am actually having a bit of a tearful moment at this! I am sorry to hear that you also struggle with OCD but please know that I am always here if you every need anyone to talk to. Really appreciate this comment today, if I could hug you through the screen I would! Loads of love and support xxx
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Oh Katie I’m so proud of you! You are so brave! Your new diagnosis doesn’t change anything.You’re still the same person. You’re still the same amazing, super talented girl. Seriously Katie, you’re my biggest inspiration.
Keep being you.
Lots of kisses, love and support from Portugal ❤
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Thank you so much! I honestly had no idea I people would be so wonderfully understanding and accepting of this. It is truly touching to know that you still see me as the same person and not some kind of weird monster. This comment has really helped me feel so much better about things and I think I am able to accept it all a lot better than I have been for the past few months! Your kindness is the biggest inspiration here. Lots of love and kisses from England xxxxx
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I figured that’s where you were going to go (w/ Borderline). It’s sad because I feel like there are so many misunderstandings with that label. People have tried to diagnose me with it. I tend to show signs of it under times of severe stress, but I don’t think I meet full criteria. But when therapists want to get rid of me really fast, they just slap that label on and write me off. It sucks. It’s so mean! The mental health field has done a really bad job at dealing w/ that one. “Personality disorder” automatically makes you feel like it’s not a mental illness, but a personality “flaw.” No! And despite what they used to say about it, it’s not an untreatable problem that just makes people manipulative and attention-seeking. I should really send a nasty letter to the therapist that wrote me off last year after slapping this label on me and then not wanting to deal with me. What a jerk she was! (But I’m not even going to bother with that lady. Waste.)
Anyway, they are finding out now that Borderline IS treatable! Very! It’s not a life-long sentence! I really think it needs a name change. It’s all wrong, across the board. It’s really about an emotion regulation disorder. That sounds way less threatening and chronic, right??!!
Not sure how it’s 2017 and things are still so behind here. Yet again, you have Brexit & I have Donald Trump happening. Yikes…
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OMG that is too true! When I was told the reason that I was initially so upset was because of that term “personality disorder”. It sounds so offensive and like a criticism of the person themselves. I hear they are trying to change it to EUPD or something but I don’t know how successful that will be or if it will be any time soon. It is also great to hear from you that it is treatable as from all the things I have heard it is just a label that follows you for life and that nobody recovers from! Hopefully now I can get therapy for it and bust that myth once and for all! xx
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Thanks know you for posting this! I got diagnosed with BPD in 2013 but thankfully I’ve learnt to manage it really well and if they were to try and diagnose me with it now, I don’t hit enough of the ‘criteria’. However because it’s on my notes so many services will not touch me, or will automatically blame BPD. My depression got declared ‘treatment-resistant’ before Christmas so I *must* have a personality disorder, not a mood disorder. AMHT won’t see me, so it’s complicated to get access to any crisis support. I got bullied out of a job because of it. I wish I’d had a say before they labelled me- but they did it without any real discussion with me (trip to A+E with AMHT follow up appointment and no further support).
On the positive side: it’s never changed how my friends see me, it’s never changed how my superstar GP treats me, my current workplace don’t bat an eyelid.
It’s taught me to see symptoms and think twice before I react- I’m much more measured with my reactions 97% of the time and it’s now only a real problem when I’m exhausted.
They make it sound like it’s for life- but it isn’t. It’s still something you can recover from and with the right support (that will come), it’ll get easier 🙂 x
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Thank YOU so much for this comment! Seriously it is so reassuring and comforting to hear of people who have also had this label slapped onto them. It is quite possibly the most confusing label in the world so it is great to hear from someone else’s experience! I AM NOT ALONE! HOORAY! I am honestly shocked that you have faced so much Stigma because of it though…I physically do not understand how MENTAL HEALTH professionals can be so mistaken when it comes to a mental health condition…On Friday I have to “make the decision” as to whether or not it goes on my notes and due to all the feedback I was going to say yes so that we can deal with it. That said I have to ask, in your experience do you think the diagnosis has caused a lot of problems? I really don’t care about being rejected from jobs by idiots because of it but I do worry about being abandoned from services! Still thank you so much for this comment as well as the reassurance that this kind of thing can be dealt with. This really does sound like a life sentence but if I can learn to manage it then I feel a lot less afraid. Thank you! Hope you are having a wonderful day and know I am always here if you need someone who understands you! xx
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Having accessed therapy (that actually didn’t help!) through the personality disorder service- they were always really reluctant to officially give a PD diagnosis because they know what barriers it puts up to other treatment. Turns out, in my area, if you’ve been seen by the Complex Needs team that’s enough to put others off!
If you have a stable MH team around you already, then I can’t see massive harm in having the diagnosis in your notes- especially if it’ll help you be signposted to extra support. You don’t have to disclose it to workplaces really anyway (I usually tell people about my depression only as thats the one that usually is the reason for me being off work!) For me, as I’ve never had real mental health support ( I function too well/know my limits) it caused more problems because no-one knew me, so just decided I was like ‘every other BPD patient who ended up in a+e/in crisis often” hmmm. It might be on your notes for a lifetime, but it definitely isn’t a life sentence! Take care xx
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Thank you so much for this advice! I really appreciate hearing from someone’s first hand experience and have found talking to you so helpful! I think I am going to be brave and get it on my notes on Friday. As you said, it may help me get the right support and I do have a VERY stable and supportive team of about 4 people (soon to be 5), so they will all be good about it. Thank you so much again, have a fabulous day and take care too xxxxx
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You are awesome. I love your personality and your sense of humour and I love watching your videos. 🙂
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Ahh this is so lovely! Thank you so much for brightening my day! YOU are awesome 🙂 xx
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This is a really amazing blog post Katie. It’s made me think about my own situation as I have spent my whole life thinking I just have OCD knowing there’s something else lurking but not able to put my finger on. My therapist has basically said there seems to be a big link between my OCD and generalised anxiety disorder. It’s made things make a lot more sense! Well done for speaking out about it, you should be really proud of yourself x
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Thank you so much for such a lovely comment! It can be so frustrating feeling like you have some undercover problem that nobody can identify so I am really glad that you may be in the process of getting some questions answered too! The more we are aware of our difficulties the more we are able to attack them from all angles! I hope this helps boost you even further forward in your recovery and thank you for being so honest and relatable! Much love and support xxx
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Doesn’t change anything,
Tons of love,
Helena
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😭 You. are. my. favourite. Is it weird that I am starting to genuinely believe this is you…am I gullible? Screw it. All my love, your future wife xxxx
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Katie, firstly let me apologise – I must have somehow missed this post when you published it. Secondly, let me tell you how proud I am of you for ‘coming out’ like this. Of course, there is nothing to be ashamed of – you are still the same old Katie we know and love and nothing would change that – but unfortunately there are still misconceptions around this disorder, even by people in the field themselves like the (inadequate) therapists you mention. I guess it’s similar to the way that some (inadequate) professionals regard anorexia as untreatable.
For what it’s worth, I am now working in mental health and my supervisor has a special interest, and lots of experience in treating, borderline personality disorder. She firmly believes that with proper treatment, patients can experience fewer and less severe symptoms and a much improved quality of life.
You are not your illnesses ❤ xx
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Oh my dear you need never apologise for missing a post! I am thrilled that you read ANY of my wafflings let alone every single one! Still I am very grateful and must thank you much for your support and acceptance on the matter. I almost look back at the Me who was afraid to post this and want to laugh because doing it has been so liberating and the kindness of people like you has made me feel so much better about the whole thing. It is also great to hear that there are people who work in psychology who are keen to help those with BPD and that with proper treatment symptoms can be managed. Online it seems to be a “you are stuck with this forever” label and I do not like that! I like a bit of hope thank you very much, so thank you for giving me that hope. Sending much love and thanks as always xxxxx
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BPD not a mental health death sentence. Everything was the same the day it was diagnosed as the day before except that you are now armed with more information and, soon, more skills to deal with it. I have a friend who’s husband has BPD and they have been happily married nearly 30 years. She does not have it and has worked with him in treatment to understand and help him. This is not hopeless by any means!
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Gah that is such a lovely story and so reassuring! It is great to hear an alternative voice to the my psychologists “THIS IS DOOM AND GLOOM FOREVER” ideas. Thank you for making me feel less alone and better about it! Xxx
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Do you follow either Sue Sibbald or Lucy Johnstone, or Jay Watts on Twitter? All of them in different ways have things to say about this label, and Sue has been given it herself. Take good care Katie x
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Ooh no I don’t! I will have to check them out! It would be great to hear from other people with an opinion or understanding of this label! Thank you so much, take care my dear xxx
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Hi Katie. Sorry, I know this is an old post! I read your blog every week btw, but this is my first comment ahhhh. Just wondering if you’d considered doing another post about BPD/EUPD and how any professionals (crisis team and ED team especially) have treated you differently because of the diagnosis? xx
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Don’t apologise for reading an old post! I appreciate it when people read my blog at all! Interestingly enough I have been thinking of writing more blogs about this and have actually written a few that I have never posted partly because of the stigma of it all. However, since this comment I have gained a lot more confidence in those posts and think I will have to get uploading them really soon! It means a lot to know that people like you would be interested in reading them so thank you for that and this suggestion! I hope you are having a fabulous day and thank you for reading my blog! xxxx
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