Guest post: Being Diagnosed with BPD

As part of Borderline Personality DIsorder (BPD) Awareness Month, we are giving our blog space to Alison, who has written as part of the #BPDAndMe campaign. The campaign was co-created with individuals with Borderline Personality Disorder, the Mental Health Improvement team at NHS GGC, the BPD Pathway Steering Group, and the Mental Health Network. Read the original piece.

Everyone’s experience of receiving this diagnosis will be different. For some it will come in what could still be termed formative years; for others it could come after decades of struggling and confusion. For some it might feel like the end of the world; for others it may be a relief. Others might really not know how they feel about it.

The crucial thing to hold on to is that there is no right or wrong response. You feel the way you feel and your feelings are as valid as anyone else’s. You’re allowed to be relieved, sad, scared, angry, confused. To feel any or all of those things. Or even what seems like nothing at all.

Maybe the diagnosis of a personality disorder left you feeling as though you in your most basic form, your most fundamental “you-ness” are flawed and somehow wrong. That there’s some irrevocable fault in your make-up. Something that can never be changed. Because surely if your personality is supposedly disordered, you’re broken at your very core. You might feel like it’s your fault you are the way you are. Like you deserve all the hurt and distress you experience. Because you’re the one whose personality is fractured, inherently wrong. And if you read some of the stuff online it might make you feel like you’re a lost cause, beyond fixing.

That’s not true.

I repeat: that’s not true. None of it.

All your complex feelings are valid. All of them. Even the ones that tell you it’s your fault. If you feel it, it’s valid. But that doesn’t mean it’s true. Please believe me that’s it’s not your fault. And hopefully in time you will gradually come to recognise that.

It’s taken me a while. I’m still working on it.

I don’t know how or when you received your diagnosis or how long it took. I do know you’ll have been through a hell of a lot before you did.

For me, getting the diagnosis confirmed was a long process. I had suffered from anorexia from the age of 16, which reached its lowest point in 1998 at the age of 21 when I saw a mental health professional for the first time and was put on antidepressants. After graduating from university the following year, I moved to Berlin in 2000, where I had a period of being mostly well (or what I thought was well) until another mental health crash happened. I spent 8 weeks as a day patient in a psychiatric clinic, followed by 13 weeks on an inpatient programme for eating disorders.

When the programme ended, the discharge letter listed among the other diagnoses something termed 'Emotionally Unstable Personality'. I didn’t understand what that meant; I don’t recall it ever being mentioned during therapy. To be honest, I didn’t even realise it was an official diagnosis. I thought it just meant I was a bit oversensitive and flaky. I never thought to look it up. That was in 2003 when I was 26.

The intervening years had been marked by extended periods of managing to work but with recurrent crashes back into depression that saw me off work for increasingly lengthy periods. Seeing a psychologist, being tried on various medications, always being told it was depression, with anxiety added to the mix at some point.

That recurrent cycle of increasingly severe crashes had haunted me ever since my time in Berlin. And every crash eroded my confidence more and more. I started feeling like it had to be more than 'just' depression and anxiety. It didn’t explain the rapid mood swings and bursts of explosive anger triggered by the slightest thing.

Why could I feel okay and then a few minutes or an hour later be in floods of tears? Why did I so often feel so uncontrollable, so suddenly and intensely distressed? Why did I feel so much without knowing why? Why did I have such meteoric mood swings that could cycle so rapidly in just one day? Why did I feel such boiling, visceral distress that I couldn’t do anything but take it out on myself in the form of self-harm?

I felt guilty I couldn’t “get over” depression and anxiety even with medication, and after so many years. I felt like I was a failure. I was desperate to understand because I couldn’t live like this any more. I even started to wonder if it was bipolar II, but that didn’t seem to fit either due to the lack of extended periods of mania. Just this daily, unpredictable and exhausting rollercoaster that raced through okay(ish) into sudden random peaks of unnatural highs and plunges into self-loathing, despair and crippling darkness. From laughter to sobs in a matter of hours, minutes, seconds.

In 2016, I rediscovered the discharge letter from the hospital in Berlin and I started wondering what this “Emotionally Unstable Personality” thing was about. When I started reading about BPD, it was like a cartoon lightbulb pinged into place. This made sense. This was me. The severe and rapid mood swings, the yawning sense of emptiness and loneliness. Clinging to certain people and idolising them. Feeling everything so intensely it hurt and the massive overreactions to the slightest trigger. The self-harm. The bursts of intense blazing anger I could only ever take out on myself. Jumping into different personas around people. Feeling totally shut down one minute but then flicking into almost manic talkativeness and laughter the next. Feeling sometimes that the world wasn’t real; that I was in a bubble that muted everything. Or that I wasn’t real. Not knowing who I was, not seeing anything clearly. The urges when driving to just slam into a tree or a wall. Spending too much and not caring. Desperately, desperately wanting to be liked and terrified of doing the wrong thing.

Feeling like life was nothing but a struggle and there would never be a place in it for me. That I was essentially a bad person, flawed beyond redemption, a failure of a human being – and it was my fault for not being “normal”. I had felt that way for so long.

Towards the end of 2016, I went into an appointment with my psychiatrist determined to ask the question. In all the time I had been under CMHT nothing had ever been said about it. So I just asked whether BPD was/had been one of my diagnoses. He hummed and hawed, talking about treating traits and not putting labels on people. But it became clear that I was indeed diagnosed with BPD; that he and my former psychologist had been waiting to refer me to treatment when I was ready. Or, more realistically perhaps, when the appropriate treatment was actually available.

It’s hard to remember exactly how I felt coming out of that appointment. Part of me was slightly dazed, I think. Being told you have a personality disorder will take anyone time to process. But mostly what I felt was relief. I was right, it was more than depression and anxiety. I had an answer. In that moment, in practical terms, that answer didn’t change anything. Yet, at the same time, it changed everything because now I had clarification. Now I had something to explain all the nebulous, confusing, distressing feelings and behaviours I’d had for so long. There was a reason for the crashes and the hurt and just nothing ever getting better. For feeling so difficult and so trapped. It had a name. And that name was Borderline Personality Disorder. I had Borderline Personality Disorder.

I was referred to a course of therapy specifically designed for BPD. It was tough, I can’t lie. I had to face up to a lot of hard truths from my past and go to places I had blocked for years. It’s been emotional, tumultuous, distressing.

I would do it all again.

Because it felt like waking up after years of being trapped in the same suffocating nightmare.

I’m starting to see me again. Or perhaps discover a me I never knew existed.

I still have times when the brakes on the rollercoaster fail and I race out of control. But I’m better at finding the emergency stop button before I spin off the rails completely.

I’m full of imperfections and pain and worries and struggles. I’m also full of empathy, understanding, intelligence, gentleness and wit. I’ve had to fight myself and the legacy others left me for most of my life. I used to think I was weak and broken. But now I know I’m strong. It doesn’t always feel that way, but I am. Otherwise, I wouldn’t still be here. I’ve made changes that have been so brutally hard but so necessary to try and build a life worth living.

And I’m doing it as me. Someone who’s awake, not stumbling through life in a false dreamworld. Or I’m getting there anyway.

I am not BPD. I’m not a label or a diagnosis. There is life beyond the borderline.

We are aware some of the content of this post may be distressing for readers.

If you have been impacted by what you have read or if you need to speak to someone, please reach out for relevant support:

• Samaritans - 116 123 (freephone)
• Breathing Space - 0800 83 85 87 (freephone)