As part of Mental Health Awareness week, I’m publishing a series of blogs telling the story of someone. This could be someone who suffers or someone who’s trying to help others.
In this one, I chat to someone who’ve I’ve gotten to know online. She’s had an unconventional life and her story is incredibly unusual and hard hitting.
This is the story of Louise.
Can you tell us a bit about yourself?
Okey dokey. Well, I’m 43, an only child who was raised in a matriarchal family by my mum and my nan. I saw my dad for a week each summer from when I was 4 until I was 8 when all contact stopped. It would be a further 8 years until I saw him again.
I was abused for a week when I was 8, this was the main cause of my BPD (Borderline Personality Disorder), although my mental health wouldn’t be assessed until I was 24, which was when I got the diagnosis of Borderline Personality Disorder. My nan died when I was 14 which, on an emotional level, pushed me over the edge. I started stealing from my mum and skipping school, which I hated because I was scared of the bullies. Due to a lack of financial support from my dad, my mum had to work full time. I had already started carrying out self destructive behaviour such as cutting my hair and self abuse. I wasn’t trusted to be alone, so after school, I would be collected by various members of the church community, to be looked after until mum returned from work. I could never work out who had pulled the short straw, the adults who volunteered to safeguard me or me, when all I wanted was to be left alone and allowed to grieve.
You obviously went through a lot when you were younger and all of the incidents have certainly had a combined effect on you. When did you first start noticing signs in yourself that things ‘weren’t right’ so to speak?
I knew I was different to other kids my age but I could never quite put my finger on how or why I was different.
I thought my face looked so different to other children, that for a couple of years I convinced myself that I must have some kind of undiagnosed Down Syndrome.
I’d get frustrated very easily (I still do) at what I perceived to be my lack of ability at school, whether it be in class or the sports field. I could be quite violent to boys that pushed their luck with me. I got referred to a youth counselling scheme, where I would refuse to talk and spent all my time doodling. I didn’t want to tell anyone about being raped or being bullied because I was scared that things would get worse or that my abuser would kill me as he had promised to do when I was 8.
I spiralled into a deep depression, in which I would find various ways to hurt myself as I felt I deserved to be punished. I made risky decisions. I got married at 18 and was divorced by 21. I got heavily involved in the music and bike scene and also into lots of trouble, to the point that some friends of mine had to stage a kidnap, just to keep me safe. I spent a good 6 months, high as a kite whilst trying to block out nightmares, voices and hallucinations. When I was 23, I had a complete breakdown, turning up in my doctors surgery, in tears and convinced that I was going clinically insane.
I should add that the first time I tried to overdose was when I was 9, using mums homeopathic medicine. I’ve never touched homeopathic medications since because I now think they don’t work. Thankfully for me, they didn’t work.
Wow. That’s a hell of a lot to experience. Looking back on the time now how do you feel you managed to get through it all?
How did I manage to get through it all? Good question and I’m not entirely sure that I have a straight answer for you, especially when I know that what I’ve said to you so far only just scrapes the surface.
There were times when I (foolishly) used drugs to block out the pain and music played a huge part for me. My first husband had been a huge music collector when we first started going out, we had a game that we played, where he would play me random intros and I had to guess the band, as time went on, it progressed to also guessing the name of the song and the album. I still play this game on my own today. Through this I was introduced to bands that I would never have given a second thought to.
One of the best things for me though was learning old and practical skills with my local conservation charity. I enjoyed learning how to lay hedges and make charcoal whilst being camped in a woodland for a weekend.
The other thing that helped me get through (and still does) was/is the story of Nicky Cruz (Nicky Cruz is a Christian Evangelist from a gang background. You can read about him here). He’s a constant inspiration to me. Like me, he probably shouldn’t still be here but he is.
As I’ve grown older I’ve become more like my nan, I refuse to quit at any cost. I’m stubborn and obstinate and refuse to let the bullies and abusers win, which I feel they will do if I give up.
Do you feel like your BPD has a big impact on your life?
Very much so. I’m overly sensitive and I become my harshest critic. I don’t always trust my own judgement and I tend to make snap decisions without thinking them through fully.
BPD brings so many other health issues as well. For myself, it brings Chronic Reactive Depression and at times disassociation. It’s hard at times, having a mental disorder that can’t be cured and having to cope with not just the BPD but all its attendant illnesses as well.
So I take it that it’s almost like you can never tell what other ailments it will bring with it?
Completely. If you take 10 people with BPD, each and every one of them will have different attendant ailments. And BPD itself can be very different for other people. There are (currently) over 10 sub-sets or types of BPD, the understanding and treatment of which are still very much in their infancy.
I was first diagnosed 20 years ago and the only help I got then was anti-depressants and being told “find something you enjoy and through yourself into it”.
BPD by its nature, is very similar to PTSD, the only difference being that BPD is often caused by some sort of trauma in childhood and then it just lays dormant until something else happens to trigger its appearance. Most medical professionals refuse to even attempt diagnosis until the patient is in their 20’s, by which time their personality should be ‘set’.
By which time it’s harder to break the routines and symptoms your illness constructs. How do you try to deal with this?
I’m really lucky in that I’ve recently started treatment to help manage my BPD. It’s called MBT (all these initial drive you mad, don’t they?). It stands for Mentalization Behaviour Therapy and it’s all about trying to see things from other perspectives. BPD causes what is known as ‘Black & White’ thinking. For instance, you may be friends with someone and then one day they say to you “I don’t like that dress on you, it looks too small” and my brain instead of being rational and thinking that perhaps a bigger size should have been purchased instead goes into BPD mode and decides “that person really hates me, they think I’m fat, if I’m fat then I must be ugly as well, I don’t understand, I thought they were my friend”, this is known as a collapse of Mentalization, once your brain gets to this point it’s impossible to bring it back. So in MBT, the therapists try to teach you how to create a mental pause button, which is to help you slow your thinking down and gives other people a chance to speak without your brain setting your own ideas in stone. It’s really difficult, you’re basically trying to rewire a short circuit in the brain. This hopefully shows also how although BPD isn’t curable, it is treatable.
Are there any tricks you employ yourself to help you cope? For example, when I’m having an anxiety attack I will try to run a guided meditation session if I can.
Sensory soothing bags! When my Mentalization collapses, I have to overwhelm my brain to get it back on track. Kind of like those films where the heroine is having hysterics until the leading man slaps her face, that’s what I have to do to my brain. In my soothing bag I have mints for taste (some people use chilli) I have something called a Tangle (it’s similar to worry beads but has different textures) for touch, pictures of nature scenes, which I find comforting, for sight, lavender oil for smell and music for sound. I have a couple of “go to” songs that are guaranteed to pull me out of a psychosis.
There was one time when I didn’t have my soothing bag and I ended up grounding myself by sitting on the pavement and watching a colony of ants.
Okay, so let’s start looking at rounding things up. How are you feeling at the moment?
I’m actually feeling pretty positive at the moment. I’m on an 18 month course of Mentalization therapy and I’ve completed almost 5 months now. I’m feeling less anxious about things although there are times when I still need to ask for help. I have a fantastic support network of friends and family. It’s been a hard journey and I know there will be more challenging days ahead, but I feel that it’s worth the fight.
Any final words you’d like to say? The floor is all yours…….
We all go through times of incredible darkness, when we can no longer see a way forward. Suicide doesn’t get rid of the problem, it just shifts it on to someone else. Don’t give up, you’re stronger than you realise.
Thank you Louise.