Former service user James Smith has written about his story of growing up with feelings he couldn’t make sense of, while no one around him seemed able to help with that process until adulthood.
This post has been edited from a speech James gave to a doctors’ training session about personality disorder and how they can improve interaction with patients and service users.
CW: Talk of suicide/suicidal feelings, bullying
Before diagnosis, I was a problem.
A problem child.
A problem adult.
A problem friend.
That’s if I could hold onto friends, if they were even really friends in the first place.
I had a difficult time growing up. I was bullied, relentlessly, growing up. It didn’t really stop after that, it just changed what it looked like. I was (and still am) ginger, gay, wear specs – you name it, the topics were all there for them.
The best part for them was that I was really easy to set off. A bit like a bonfire night rocket. Light the blue touch paper and just watch me explode! But then they didn’t see what happened after my explosions were finished. They didn’t see me retreat so far inside myself that I didn’t think I’d find my way back out again. Broken and alone.
I saw counsellors, but none of them found the solution. They just thought it was me. I was the problem. I was just another problem, another kid with anger issues. Forming relationships was almost impossible. If someone saw the dark side, the anger, they’d just turn tail and run, leaving me broken and alone. Again.
Anxiety. Sadness. These are the things I had to deal with on a regular basis. Finding distractions. Or just locking myself away. If I’m on my own, no one can hurt me.
As an adult, things didn’t change all that much. I met and moved in with a partner, but that wasn’t exactly the healthiest of relationships. Friends came with the relationship, but in the main they were just grown up versions of the same type of bullies I endured at school. Pulled the same type of tricks. “Lets wind him up and watch him go off.” After a few years I eventually understood that the relationship was broken and unhealthy. But that took a long time to realise. Besides, if I left, I’d be alone again.
I saw counsellors, but none of them found the solution. They just thought it was me. I was the problem. I was just another problem, another kid with anger issues.
Around that time I met someone new. Someone different. He didn’t know the backstory. He was interested in me. Interested in what I wanted to do, say, think, be. I got comfortable with him and the backstory started to slip out. But he wanted to know about it. He wasn’t scared by it. The episodes of anger and regression appeared. He didn’t run. I was still broken and he saw me at my worst. But I wasn’t alone. The thing I fear the most, every single day, being alone, and here he was promising me that wasn’t going to happen!
As time went on, he saw more and more of the broken parts of me and he encouraged me to find help. He continually reassured me, despite my protestations – and his own fears that some shrink would blame him, cause it’s always the boyfriend’s fault, except when it’s the mother’s fault, obviously! – that just because things haven’t helped in the past it doesn’t mean they can’t in the future. He started looking for help to try and identify what it could be and he stumbled across Bipolar Disorder. The symptoms didn’t exactly fit me, but it was worth looking into, even if to just rule it out. So off we went to the doctors, who swiftly dismissed the internet as a means of diagnosis and told me to get some counselling.
We went on holiday and whilst we were overseas I had another episode. A BIG one. This wasn’t the first time I’d told him to leave me nor the first time I’d threatened suicide. Although it was the first time I’d tried to kill myself by standing in the middle of the road waiting for a car to come. But we were on holiday. In Spain. And I was standing on the wrong side of the road! Thankfully, he’d seen this before and knew it was just a matter of time and his immense patience to wait for me to come off the proverbial ledge and get me back to the hotel and to safety.
The following morning, whilst i was trying to sleep off the inevitable exhaustion that my episodes bring, Facebook presented him with a post about Borderline Personality Disorder. He’d never heard of it, knew nothing about it, but over the course of the following hours he researched into what he described as “a series of websites and books that were written about me”. We sat down and he read things to me and asked me questions that made me feel like someone knew me and knew what had been happening over all these years.
We got home and went to the doctors. First thing we said was, “Yes we know, stub your toe and the internet will tell how quickly you’re going to succumb!” Thankfully, it wasn’t the same doctor as last time, a much younger doctor this time, and we were relieved that this one just laughed at the joke and moreover actually listened to what we were saying. To his credit, he did say he’d never heard of Borderline Personality Disorder, but just because he hadn’t didn’t mean it couldn’t be that. He said he would refer us to the Leeds Mental Health team to see what they could come up with.
In the meantime, I had another episode that involuntarily involved my manager from work and that set off a chain reaction at that end of things. However, as a result he sent me to see a Consultant Psychotherapist contracted by my employer to help with psychological problems. Over the course of a few sessions, he informally diagnosed BPD. I say informally because he wanted the official diagnosis to come from the NHS. He produced a letter for me to take with me when i had my referral that stated he firmly believed BPD was the correct diagnosis.
We sat down and he read things to me and asked me questions that made me feel like someone knew me and knew what had been happening over all these years.
We saw the GP at the beginning of July and I had my referral appointment in early September. The doctor read the letter we brought and then spent time talking with me, discussing a lot of things and he agreed that I was living with BPD.
The relief to know it wasn’t just me. That actually something was wrong.
There’s no cure. No tablets. You live with it and learn to manage it best you can.
But there’s Journey. What’s the point, more counselling that won’t work. I was continually reminded that they didn’t know what they were counselling before, but now they do!
Anxieties went through the roof. What will they make me do, what will they make me say? Who will be there? And why do I have to wait so long to go on it?
The time eventually came and, despite an unhelpful new manager at work, I was able to have my job work around the course and could go. But what’s the point? Nothing’s helped before, so why will it now? Before I knew what Journey was, I was constantly battling with these fears and anxieties. But once I got there. I got to meet people who, even tho every one of them had a different version of BPD, a different list of symptoms, they got what I was saying, and I got them too. We could talk about things without having to censor out the parts that make us sound psychotic or like it’s just some giant scheme for attention seeking.
I actually began to feel like I was a real person sometimes and that I was accomplishing something. For me!
It also made me feel proud that I’d actually turned up. I wanted to keep turning up, each week, because up to this point, even trying to convince myself to get out of bed each day was becoming and even more challenging feat.
From Journey I was able to get my husband – oh wait I forgot to mention, we got married in 2017! Anyway, I got my husband onto a carers course, Cygnus, that works alongside Journey, to help those who care for us BPDers understand things a bit more and gives them a bit of a support group too.
For now, we live with my condition and, whilst it still has its moments, having the diagnosis has helped us understand what it is and why it does the things it does.