My New Diagnosis

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

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http://www.mind.org.uk/information-support/types-of-mental-health-problems/borderline-personality-disorder-bpd/#.WLRDi7GcbVo

Why I Like Being Diagnosed With Mental Health Problems

Before I get into this post, due to the potentially controversial/misleading title if people simply read that and not the rest of the blog, I really want to emphasise the fact that I am not saying in any way that I like having mental illnesses. As you all know, I hate having mental illnesses, and if I could find a magic wand to make them all go away for everyone on the planet then I would do so faster than the flap of a hummingbird’s wing (they do 50 flaps a second just incase you were wondering). That said, I have to admit that recently, at a time in which I am struggling a lot with my various disorders, the fact that I am diagnosed with such disorders, is the one positive thing I am holding onto. Confused? Allow me to explain…

Every morning I wake up exhausted from the previous day yet knowing that I have to basically relive that 24 hours again and fight the same daily incessant battles once more. Everything I do, from showering, making a cup of tea and putting on my slippers to eating a bowl of tomato soup (if Covent Garden are reading this then please be aware that I eat your fresh plum tomato soup everyday and am practically keeping you in business so please send me all the free soup available), is a challenge.
Now if I was to be told that the way I live my life is normal, then to be honest I wouldn’t want to take part in it anymore. If life is about constant fear, dread, terror and anxiety, and if it is normal to worry that your mum will die because you touched a towel wrongly, then quite frankly I would give up right now. I don’t enjoy my life as it is at the moment, I simply endure it, and the one thing that gets me through is knowing that none of what I do is normal and that none of this is how life has to be.

Of course I understand that everyone in life has a hard time. Just because you don’t have mental health problems doesn’t mean everything is sunshine and rainbows, so I am well aware that if I ever get better from any of this, life is not going to be easy or enjoyable all of the time. I do however like to think that general day to day life would be a bit less of a struggle.
It comforts me to see other people out there living their lives differently to how I do, touching doorhandles and eating food without crying, because it shows me a world that one day I might be able to be a part of. It gives me hope and something to aim for.
I like that my being told that the reason I struggle to eat is because I have an illness called anorexia, that the reason I cannot enjoy anything is because I have an illness called depression and that the reason I am compelled to perform futile routines for hours on end is because I have an illness called OCD. By identifying and diagnosing these things as illnesses, it suggests that they are things that one can get better from, just like with any purely physical illness.

Imagine you have the flu. You cannot sit up because your whole body aches in places you never knew existed, you have a headache that feels like there is a monkey in your brain banging a giant gong and waving a tambourine (to be more specific he is trying to play Bohemian Rhapsody but it isn’t going at all well). You go from hot to cold so quickly that half the time you aren’t sure whether you want to be wrapped in a blanket or to sit in the freezer, and your nose and throat are so clogged with flu rubbish (medical term), that it is physically hard to breathe.
Imagine lying there groaning about how horrendous you are feeling, and then someone comes into the room telling you to keep it down because there is nothing wrong with you, that this is what life is like, that this is how you will spend your entire human existence, that the pain you are feeling is “normal”.
I don’t know about you, but whenever I have the flu or any other unpleasant physical illness, the comforting thing is the thought that it will go away, there is some evil germ doing something horrible in my body but one day it will be gone. It may be frustrating that I can’t get out of bed and have to cancel plans to meet a friend, but in a week or so I will feel more up to it and we can rearrange. Yes, it sucks that I cannot breathe through my nose and that I am drowning in tissues soaked in my own mucus (no need to thank me for that glorious image), but soon all the mucus will be gone and air will start flying up and down my nostrils with refreshing ease again.
When something is diagnosed as an illness, you can look it up, find cures, relate to symptoms that you thought only you felt and find inspiration and hope in people who have recovered from the troubles you are facing. Have a headache that feels like there is a monkey in your head banging a gong and waving a tambourine? Does it kind of sound like he is trying to play Bohemian Rhapsody but is failing miserably and should probably try learning to play the piano instead? Awesome, that is a symptom of an illness you have and should clear up in a few days. You don’t like having the flu, but you like knowing that there is a name for what you are experiencing and you like being able to learn that it will not last forever. It would be a hell of a lot harder for Harry Potter to destroy Voldemort had he not known who or what was the villain he was fighting, but in identifying him, he knew who the enemy was and therefore knew his target/who he should be attacking. By being diagnosed with mental health problems and by giving them names, I can therefore learn about them and work on a strategy to defeat the evil little bastards.

So as I said in the beginning, do I like having mental health problems? No,I hate their existence and whatever devilish lair they sprang from, but I still love, and it is of great comfort to me, that I am diagnosed with them. I know that at the moment I am not “normal”, that I am unwell, so like the person with the flu, I am getting through each hour by hoping that one day when I wake up, I will finally be able to breathe again.

Take care everyone x

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Why I Wish Mental Health Problems Came In Boxes

Whenever a doctor or health care professional looks at my notes for a brief overview of my mental health, they will see three separate words:

Depression
OCD
Anorexia

The words may not be on separate lines as I have illustrated above, but there is always some kind of gap between them, even if that gap is only in the form of a comma or perhaps a space bar. As a brief summary of my mental health, I suppose those three words can give you a reasonable idea of my struggles. Nevertheless, the idea gathered from those three words is only a reasonable idea, as my illnesses are far more intertwined than many people realise. If I were to write the three diagnoses in a more accurate form, they would look like this:

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Now granted, that wouldn’t be as easy to decipher as the former example (although doctors are used to examining messy handwriting…), but it would be a lot closer to the truth and what mental illnesses feel like.
I think that some professionals, even those working in mental health, have a a problematic view of the illnesses that they treat by thinking that they can be separated into neat tidy boxes as easily as I can separate these words just by hitting the space bar. Don’t get me wrong, I would LOVE it if they were right and that mental illnesses really did come in boxes, much as the title of this blog post suggests. For one thing, if mental illnesses came wrapped and caged within physical cubed objects it might be possible to operate on a person and physically remove the cause of any problems with the ease with which they remove a tonsil (or tonsils…I think people have more than one tonsil…I really need to get round to counting mine one of these days. It has been on my to-do list for years). More importantly though, were mental illnesses to be so easily distinguished from each other, it would make treatment far more straight forward.

In terms of treatment I get for my mental health, I have several very separate teams of people in several very separate buildings. There is the hospital for my eating disorder which always smells of cauliflower cheese, there is the general mental health centre for my depression (which doesn’t smell much of cauliflower or cheese), and if I get accepted to the new service I was assessed for two weeks ago, I will have another building to attend appointments in regarding OCD (I haven’t been in that building yet so I am afraid I cannot document how much this place smells of either cauliflower or cheese but I will be sure to inform you the moment I know).
When I walk into each building every week, I am expected to talk about and deal with the illness that has been designated to that service. It’s as if they think I can leave my other mental illnesses by the door still packaged in their neat little boxes, without realising that the three are inextricably linked in a complex mesh even I cannot understand, so if one comes into the room with me, the other two cannot help but tag along.

For example, because of my mental health problems I have a lot of behaviours. One of these is that I tie my hair up repeatedly before a meal in a routine that can take as short as five minutes or as long as several hours. Now, if asked, I would say that this behaviour is an eating disorder behaviour as I only carry it out prior to a meal. If I wasn’t about to eat something, I could tie my hair up in seconds so I would say that as the anxiety is more about preparing for the impending meal, the hair tying is a part of anorexia. That said, there are many professionals who have argued with me that it is in fact an OCD behaviour, an obsessive ritual of repetitive compulsions that make no sense in rational terms. Who is to say which one of us is right in our conclusion? Both have fair points and it is easy to argue either way. What about the fact that I cut the majority of foods into four separate pieces? It is related to food so it could be my eating disorder, yet the numbers and rigidity with which I handle a knife is far more akin to the OCD. So what is the answer? Who is the culprit in causing each of these rituals? Who can solve this mystery? Someone find Poirot immediately! (Finding Miss Marple or Sherlock would also be helpful but they are second choices because they don’t have fancy moustaches.)

It isn’t that I particularly care which of my diagnoses is causing the problem, I just want them to go away, yet without knowing the specific name of the villain in this situation it is hard to find a professional able to help me. When I talk to the eating disorder services they tell me to talk about the ritualistic eating behaviours with the OCD team yet the OCD team tell me that is a job for the eating disorder hospital and as a result, treatment for these behaviours tends to slip through the cracks without ever getting a chance to materialise because they don’t fit into the neat boxes everybody wants them to. In this example it isn’t really that big of an issue as in spite of not fitting into the neat boxes all the time, I still receive treatment for both OCD and anorexia even if is is unable to solve the issues where behaviours are a combination of the two. The biggest issue however, is when this lack of mental health diagnoses tidiness doesn’t just get in the way of someone’s treatment, but gets in the way of them being accepted for treatment at all.

All over the world people including myself who are seriously struggling with mental health problems are referred to services that turn them down not because treatment is not needed, but because the case doesn’t exactly fit into a specific list of criteria. So why not broaden the criteria? Obviously I realise that the issue causing all of these problems is a lack of funding for mental health services and thus the need to have specific criteria to narrow the case load down (don’t worry, when I become prime minister I am going to be chucking so much funding at mental health services that this problem will be solved. I am also going to chuck in a lot of funding to investigating the invention of a mug that keeps a cup of tea at exactly the right temperature for hours on end, but that is a story for another time).
Still, issues with funding or not, it makes absolutely no sense to me seeing the complex soup that is mental health being separated into neat little blocks. I myself have been turned away from services for being “too complex”, which is basically like saying “yes you are crazy and in need of help but you do not fit into our definition of crazy so we are going to have to send you elsewhere only to be told the same thing and referred somewhere new all over again”.

Labelling a mental health problem with a diagnosis like “OCD” or “anorexia” is of course incredibly useful in terms of narrowing down a problem, but even then every person with OCD will experience the illness differently and that needs to be taken into account with the way they are treated as each experience is equally valid. If you go to the supermarket there will be a whole aisle of baked beans, tin upon tin all labelled “baked beans” and sure, they are all “baked beans”, but each one is slightly different just as each person with a diagnosis is slightly different. Nobody should be refused treatment for being the “wrong kind” of crazy, the fact that there is any kind of crazy should be enough.

That is why I wish mental health problems came in boxes, but alas I fear that is one wish that won’t ever come true (much like the wish I made on my 4th birthday to become a penguin. It has been 20 years and I am still waiting. Haven’t even got a sign of a flipper yet.) However, if it is a wish that won’t come true then we need to change the way we see mental disorders and indeed treat them rather than acting as if things are far simpler than they are in reality. It is time we realised that mental illnesses don’t come in boxes and the people who suffer from them don’t either. Rather than refusing to help those of us with a bit of a confusing mess going on, we need to roll our sleeves up and dive in anyway. Everyone is different, yet all are equally worthy of support.

Take care peeps.

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