On having Borderline Personality Disorder/Emotional Intensity Disorder- World Mental Health Day 2016

I can’t remember if I managed to write anything for the last World Mental Health day, but I wanted to write a little update on my own stuff for this year. I haven’t really had much energy to write about how I’ve been getting on recently but I feel like it’s important to carry on the conversation if at all possible.

As a lot of you might already know, I’ve been receiving treatment for depression and anxiety for a good while now. Over the years I’ve been on four different antidepressants, and have been through three rounds of psychological therapy. Quite honestly, I was beginning to hate myself because I didn’t understand why I wasn’t getting better despite being given the recommended treatment. I felt like I must be doing something wrong, like I was getting in the way of my own recovery somehow. But no matter how hard I tried I couldn’t shake those old habits.

A few months ago I was also diagnosed as having Borderline Personality Disorder too.

I wasn’t thrilled, at first. I think it was mentioned to me around a year ago in a review with my psychiatrist actually, but I completely rejected the idea because, in my mind, I knew what BPD looked like, and I wasn’t it. Then in June I was seen by a psychologist with the Complex Psychological Interventions Team, who was assessing me to see what therapy might be best for me to try next. She again asked me how I felt about a new diagnosis. I maintained that I wasn’t the biggest fan of the medical model or of pathologizing personality traits, but wondered if maybe being diagnosed as having BPD might be something which could help, rather than hinder, my recovery.

One thing which massively helped in terms of me accepting a new diagnosis was the psychologist introducing some alternative names for BPD. Emotionally Unstable Personality Disorder is one of the alternative names for BPD, but it wasn’t exactly one which made me feel more positive about it. Emotional Intensity Disorder however, felt a bit more comfortable.

Rather than describing my personality as being disordered, calling my condition Emotional Intensity Disorder is, I think, a more accurate way to refer to it.

I know there is a lot of stigma attached to the label of BPD. And I think that’s why I was so reluctant to accept it as a diagnosis. Having worked on inpatient mental health units, and also just through being subject to the media generally, I had an idea of people with BPD being untreatable. In my experience, they were not understood very well and at times were even labelled as not being mentally ill at all.

Now I understand so much more about BPD, and I embrace the positive things the diagnosis has done for me. In practical terms, I recently was able to start group therapy which was designed specifically for people with a diagnosis of BPD (called STEPPS); this was also where I first came across the term Emotional Intensity Disorder. Maybe even more significantly though it has given me a new framework by which I can understand myself and my mental health. The more I read about EID, the more comfortable I am. I don’t feel so much like it is my fault that I haven’t responded well to treatment in the past- The literature suggests that people with comorbid EID/BPD and depression won’t find talking therapies typically recommended for the treatment of depression as effective.

I realise now that I always felt slightly at odds with my depression because it just didn’t encapsulate the entirety of my mental health experiences. Yes, I felt empty and low, but there was more. I’m extremely sensitive, and once something has upset me it takes a while for me to be able to return to baseline. I get angry a lot, although this often gets directed at myself, and my moods can fluctuate drastically and rapidly throughout the day, sometimes at the smallest trigger. I feel very insecure in my relationships. I have self-harmed since I was 13 years old and this behaviour is deeply entrenched in the way I manage my emotions. I struggle with my sense of self and with my identity.

As I mentioned before, I’m not a massive fan of the medical model and I don’t like the idea of pathologizing experiences which are often perfectly normal parts of being human. But this diagnosis has given me more options and hope for the future, so for now I’m claiming it as my own and I refuse to be ashamed of it.

I want to continue to be open about my mental health because so many people have opened up to me as a result of my posts in the past. I hope I can continue to help people understand a little more and feel less alone.

Crumble

So, I’d like to update you all on my mental health at the moment. I’m going to try to be as vivid and descriptive as possible, because I’m finding it so, so difficult with all this in my head all the time, and I think it will help if I can explain it to someone else so they have an idea of what I’m experiencing on a day-to-day basis. If you get it, then great! If not, then that’s fine- You’ve done me a massive favour by reading this in the first place and giving me a chance to unload all of this. So whatever you make of this post, thank you for taking the time to read it and helping me on my journey to recovery. ((Whatever the hell that is!))

It’s like I’ve been falling apart recently. But not in a really big, dramatic way. I love cakes and sweet things, so let me use a food-related metaphor for this… I think I’ve just been crumbling away, like how shortbread just kind of falls apart when it’s fresh out the oven, and you pick it up with too firm a grip. I didn’t even notice to start with, because at one point, I was really making progress, and my relapse wasn’t something I wanted to acknowledge. So I have been spending the last month or so just powering forwards, with parts of me crumbling away being left behind as I go. But now when I try to think back to what I’ve been doing and how I’ve been feeling, it’s just a big blur.

A couple of weeks ago I had that light bulb moment when I realised something was wrong. Nothing was exciting any more. I got no pleasure from exercise, from food, from reading. Every single time I sat down to do something, or thought forwards to what I had planned for that day/week, I couldn’t help but wonder what exactly the point was. I try to think about it, but the answer continues to evade me. I’m trying to hold onto something that is turning into smoke and drifting away from me and I can’t do anything to stop it. For a while I’ve been able to ignore that this was happening, but it’s been sitting in the back of my mind, just waiting for the moments when I let my guard down. I stop focussing on my job, or on a task that I’ve managed to find to fill my time, and that terrible feeling just creeps up on me.

I can feel it across my whole body. It’s a tangible, physical thing. A horrible, dark fog, dense and all-encompassing descends on me. My brain is filled with hopelessness, and the fog dampens down my thoughts- I can’t process stimuli like normal- the fog pushes its way into all the gaps in my head and gets in the way. It sits behind my eyes, and presses on my tear ducts. I’m constantly on the brink of tears. This massive weight settles into my chest, and my limbs. I want to stop. I want to sit down, or lie down, and never get up again. My tongue is heavy in my mouth, and talking, responding to people is so hard. The weight in my chest gains substance and squeezes tightly.

How does this translate emotions-wise? It varies, to be honest, and I often feel totally contradictory things. I want to stop being, but I also desperately want to carry on. I feel panic, as I struggle to find meaning in anything, in anyone. I am guilty for feeling such deep despair, when I am surrounded by people who love me. I don’t want anyone to hurt because of me, or feel like they are not enough to make me happy. God, I appreciate you all so much. I feel such strong emotions that they tear my psyche apart, but at the same time, I feel so empty. How is it possible to feel both everything and nothing? I exist apart from the world all of a sudden, and I struggle to link my subjective experience of life to the events that are going on around me. Like the strings connecting me to the world have been cut, and I am desperately trying to reconnect them in time… I don’t know where this feeling of haste comes from. I think it’s just that I need to know I will get better. Again, what is ‘better’? What is ‘recovery’? I am hopeless. I don’t even know myself what will make me feel better in those moments where I’m falling apart, so how could anyone else possibly help me?

I can’t think. I can’t process anything. I am crying, and I have this horrible feeling bubbling up inside me, in my chest. It claws its way up my throat and sits in the roof of my mouth. I need to expel it so badly. I don’t think I can even express this enough, how trapped that feeling is and how strong my desire is to rid myself of it. I have cried, loudly, I have punched things and gone running until my legs ache. It won’t go. It just recedes slowly, until finally I can move again and function, and I go about my daily business. I go to work, or I throw myself into something that encompasses my attention, and slowly, with nothing from me to feed it, that fog draws back into a small space in the back of my head. And I always know it’s there, but at least I can breathe again, and I can carry on in a forward motion.

At this point, I do just want to point out that as horrendous as this all sounds, I’m not in a state where you need to be worried about my safety. I feel a bit nervous, as this whole post is a bit dramatic for my tastes, but it serves a purpose for me, so I am going to go ahead with it. I need people to know how hard it is to carry on sometimes. I realise that’s extremely self-indulgent, but I’m willing to accept that if it eases some of the pressure I live with at the moment.

The frustrating thing is that I don’t feel like this even captures the full spectrum of my emotions! I feel so many other things at the same time when I experience what I’ve tried to verbalise above A mini-crisis I think, would be a decent way of describing it. It might last a few minutes, or it might drag on all evening, from the instant I get in the front door from work until I manage to fall asleep many hours later.

I’m not the only one living with mental health problems by a long, long way. And I’m not even the worst off, by even more. I am also writing about my mental health for them Everyone who is suffering from poor mental health and feels totally overwhelmed by it. It can just totally smother you, until the you the world sees is just the bare bones of you, and you are powerless to fight back.

Be kind to people, because you will never know how much they may or may not be suffering at any moment in time. Please understand that it is so hard to fight against your own mind. Imagine it. You second-guess every passing thought, to try to work out whether you are being ‘rational’ or not. You can’t trust your own judgement.

I do everything I can to maintain ‘good mental health’. I exercise, I eat well. I take my medication, I attend therapy. I am still experiencing the same cycles of being ‘fine’ and being ‘unwell’ as I did before. Not in the same way, but that pattern definitely remains. I feel like this blog is my last chance in a way. Can I heal myself through activism? I really hope so.

Thank you for sticking with me! I hope that for those of you that identify with some of the things I’ve written can find comfort in the fact that you’re not alone.

Jess