My own PTSD experience - Jacqui, Founder of PTSD UK
In 2015, I was diagnosed with Post Traumatic Stress Disorder (PTSD). My PTSD came as a result of a serious sexual assault 2 years prior and left me with debilitating, exhausting, uncontrollable and crippling fear – stuck in the fight/flight/freeze adrenaline surge. Fear of everything, and unable to do almost anything (including just being me) without incredible effort even though the man who assaulted me was sentenced to 9 years in prison for his various crimes.
Looking back, I started developing symptoms of PTSD quite quickly after the assault. It happened on a train, and so train travel very quickly became problematic (and as a train journey was part of my daily commute, EVERY DAY became a trial). I found real difficulty when going through tunnels on the train – I felt trapped, claustrophobic almost, and started having panic attacks. For me (and to those I spoke to), it felt like this was to be expected. I’d had a really traumatic incident on a train, and so it was deemed ‘understandable’ that I was finding it hard.
I also began ‘seeing’ the face of the man who assaulted me, on other people. On the train. Walking in the street. Everywhere. I’d phone my mum in a panic ‘he’s on the train with me and he’s watching me’ – even though we all knew he was in prison.
Only a few months after being assaulted, I was due to be married, so when I began to experience more panic attacks, high anxiety levels, the beginnings of hypervigilance and other symptoms, I put it down to the stress of planning a wedding, on top of the ongoing court case. I’ve always been a very stoical, optimistic ‘oh I’m fine’ type of person, so put these new feelings down to the impact of everything that was happening around me. I always managed to find excuses for the new symptoms I was feeling.
The following year, I turned 30 – and wanted to do something to celebrate. So I decided to do a ’30 when I’m 30 list’. I planned to do things like learn how to fish, celebrate a holiday from a different country, meet Ant and Dec (my heroes), learn to juggle, create my family tree, eat Belgian waffles in Belgium and all sorts of fun. During the year, I gave everything I had to completing these challenges. It was fun, exhilarating and took a lot of planning and time – I kept myself as busy as possible, because every time I had a quiet moment, or a day at home, my flashbacks and panic attacks intensified. My list gave me a focus and I felt I could ‘write off’ the adrenaline surges I was getting as ‘excitement’. That list got me through that year – but I was slowly falling deeper and deeper into a hole which I couldn’t see.
During the 2 years that followed, the man who assaulted me continued to have an impact on my life. Court dates were set up, I’d prepare myself in the days prior, get things prepped for being off work that day, and pluck up the courage that I’d need to actually face him in court and recount my story. Each time, the night before, he’d fire his lawyer. This means that the court date was cancelled until he could get a new lawyer in place, have them get to know the case, and then set a new date. This went on every couple of months for over 2 years – and each time felt like a kick in the chest.
Soon after my 31st birthday (and when my ‘list’ finished) my world came crumbling down. Despite having an amazing job which I loved and which I’d worked so hard to achieve, I felt like it was the worst place in the world, I suddenly hated my job and needed to leave with a huge urgency. I was convinced that my husband was cheating on me – catastrophising, becoming almost paranoid. I couldn’t make sense of how I was feeling.
At times I was unable to move, breathe or speak from ridiculous fear just by going about my everyday life. I developed psoriasis under my eyes from crying so much, I didn’t sleep for more than an hour at a time, I bought a baseball bat to keep by my bed to protect me incase someone broke in, my muscles and joints were in agony from being tense, I’d chip my fillings out from clenching my teeth so hard without knowing, I developed severe digestion issues, I developed issues with sounds and hearing, I couldn’t go out alone, but I couldn’t be alone in the house either and I made life difficult for everyone around me – I wasn’t me anymore, I became a highly sensitive faulty CCTV system.
Everything in my life felt like it was falling apart.
I’ve always had a close relationship with my Mum, so when I sat down and spoke to her about it all (and admitted that I’d phoned sick into work complaining of earache, but the truth was that I simply couldn’t face leaving the house), she said ‘This isn’t you! This isn’t right, and it’s been since the assault.’ So I made the decision to go to the GP. It didn’t take much persuading – I knew something was wrong, but felt so numb at times that I just went with the flow.
Stepping into the GP’s room I burst into tears. I mumbled something between the floods of emotion about how I felt, and that I’d been assaulted. The locum doctor that I saw very quickly suggested that it sounded like PTSD and that he’d sign me off work and refer me to the local mental health team for a full diagnosis, and to discuss treatment options. Looking back, I was really lucky to see this particular doctor – my own GP later told me they may not have realised it was PTSD I had (one reason I’m so passionate about providing information to healthcare professionals as well as people who are directly affected by PTSD and C-PTSD!)
I’d only ever heard of PTSD in the context of veterans. I’ve always been a very strong supporter of charities for veterans and military personnel, and so initially I was confused “but I’ve not seen the things they’ve seen, or been to war, or done the things they’ve had to do”. I didn’t feel ‘worthy’ of such a diagnosis.
In the following weeks and months, the more I read the sparse information online about PTSD, the more it made sense. But also made me question things more too. The symptoms all lined up – and also continued to get worse and worse. But anything I read online was about military people with PTSD so I felt guilt, and shame – almost like I was ‘taking away’ from the horrors they’ve been though, by having the same diagnosis.
It took almost 4 months for me to see the local mental health team to get an official diagnosis. During this time, I’d been off work, and doctors wanted to put me on beta-blockers so I didn’t damage my heart from putting it under too much stress. I’d managed to start getting out the house once a day, as I’d managed to create a space where I felt comfortable and relatively safe. I started doing what I termed ‘my old lady classes’. So once a day, I pluck up the courage to drive to the local gym and do aquarobics and Zumba classes. Of course, most people my age were at work, so I was surrounded by ‘safe’, older (mostly) ladies, doing low impact exercise. I’m sure those classes and those lovely ladies saved me.
Despite feeling very numb while doing the classes, they helped me burn off some of my adrenaline and ‘nervous’ energy – but I’d still have to deflect the odd question of ‘oh, don’t you have a job’ etc. I didn’t want to tell anyone about my PTSD yet. One day, I plucked up the courage the answer the question honestly. “I’m actually signed off work for a few months as I have PTSD,” I said. The response was “oh, were you in the army, or navy, or…?” Nobody seemed to know anything about PTSD – there was a lot of misunderstandings out there.
Despite these moments of success being able to leave the house, there continued to be more and more times of despair, or cries for help – and it was affecting every part of my life. Despite always being a ‘happy-go-lucky’, never swearing, optimistic person, I’d become very angry, and at times aggressive.
A wolf whistle in a car park from an unsuspecting man turned into me screaming ‘F**K OFF!’ with such viciousness, I even surprised myself. Although some people may think it was deserved, I’d normally shrug that kind of thing off, or ignore it – I’d certainly never swear so loudly, unashamedly and aggressively at a stranger. Who was I becoming?
I developed hyperacusis – so everyday sounds became overwhelming, intrusive and a source of anxiety. At the time, an advert for Premier Inn was running on the TV where Lenny Henry was asleep in a bed in Kings Cross Station. The pretend snoring that he did for some reason made me physically feel sick and I’d cry hysterically and so I had to mute it every time it came on the TV.
My trademark platinum and blonde hair (which has long been a huge part of my personality and ‘me’) was dyed darkest, deepest purple – in hindsight I just wanted to be a different person – I think it was a physical ‘cry for help’. I didn’t want to be who I was, so felt like dying my hair might achieve that. For some people, they turn to plastic surgery or tattoos – but for me, it was an unrecognisable shade in my hair out of desperation to try to change things.
But it was an argument with my husband that turned into one of the scariest moments of my life, fearing for myself and who I had become. Despite never really arguing previously, I’d become a very difficult person to live with. On one specific night, after a particularly aggressive outburst from me where I recited all the things he didn’t do for me, my husband went downstairs to our kitchen. I could hear him scrabbling around in the kitchen drawer and my mind took me straight to a place of overwhelming fear. “He’s getting a knife and he’s going to kill me”. I screamed for him to come upstairs, and hearing the terror in my voice, he did just that. I made him stand like a starfish and spin on the spot to prove to me he didn’t have a knife. I was cowering on the bed, hysterically crying, unable to breathe and I felt like I was watching myself – I could see the fear on my face. My husband has said since, that he’s never seen terror in someone’s eyes like mine on that night. A genuine fear that my life was about to end by his hands.
Eventually, I let him come and cuddle me where we sat for hours, with me crying and shaking. Comforted by him, but still scared he may be about to stab me. It was the most confusing moment of my life. And actually, it was caused by him scrabbling in the kitchen drawer to find a pen, so he could write a list of all the things I’d told him he was an awful husband for, so he could do better.
When I eventually saw the local mental health team, they very quickly diagnosed me with PTSD (and suggested there was a possibility it was C-PTSD). They suggested that EMDR treatment was the best option for me, but as many people experience, the waiting time for this was going to be several months.
Of course, the scientist in me went home and tried to research EMDR, but there just wasn’t much information out there. I could see how it would be done – but for me, I felt that I needed someone to open up my skull, take my brain out and give it a deep clean with a brillo pad. As much as I was willing to try anything, it just didn’t seem possible to ‘fix’ me with my eyes following light beams. The thing I kept saying through everything was ‘I just want to be ‘me’ again’ – I didn’t know if that would ever be possible and that is heart-breaking.
In order to extend my ‘sick line’ for work, I needed to see the GP each month. I’d usually see new Doctors each time, and none of them knew much about PTSD – or EMDR. It felt like a hopeless situation. Although I was glad to receive a diagnosis as it made me feel that if there was a name to how I was feeling, then maybe it could be fixed – but at the same time, the professionals knew nothing about it. Or the treatment. How was this going to get better then?
One day, my mum came (literally) bounding over the road to my house. “It’s going to work, I just know it”, she said. That day, she’d been speaking to a colleague at work, who, in passing, had asked how I was. As she was comfortable talking to this person, she explained that actually, I wasn’t doing great and was signed off work with PTSD. This was the first person she’d really spoken to about it, but in a fortuitous twist of fate, they revealed that they had previously had EMDR treatment, and it worked wonders for them. They discussed EMDR in more detail, how it worked, how they felt now etc, and she relayed this to me.
The hope that I got that day, from knowing it might, and could, and probably would work was like a bolt of lightning to me. There was hope. It wasn’t just a medical term or therapy – it was a real life story of someone who felt like I did, who now doesn’t!!
But I knew that this treatment, which I now really believed in, was still at least 9 months away on the NHS waiting lists.
I don’t know if I’d ever specifically say I was suicidal – or even that I had suicidal thoughts, but despite the hope I’d been given, I knew there was no way I’d be here 9 months later – it didn’t feel like suicidal thoughts, it was just a fact. There was no way I could live this way for much longer.
Luckily for me, my mum was able to pay for private EMDR treatment for me, and so we began looking into options. My mum phoned them and explained the situation and what we were looking for – and we came across 2 or 3 that sounded nice. I felt that I needed it to be a female therapist, but aside from that, I’d never been to therapy, had counselling or anything similar, so we didn’t know what we were looking for.
The closest EMDR therapist to us was very local – so went to see her one day with my Mum for a ‘discovery session’ where you can get to know each other and explain things before deciding if you want to work together.
To be fair to this person, they’d tried to make their room feel cosy with nice prints on the wall, crystals and ornaments on the tables, dreamcatchers in the windows, and comfy chairs and cushions – but when I recounted my trauma and how I’d been feeling since, it was the first time I’d ever been able to talk about it and NOT cry! Looking back, I just didn’t feel comfortable – I couldn’t release those emotions, so it wasn’t a good fit. I realised that I felt I needed something more ‘clinical’ – a white painted room with chairs and nothing else. I felt that there would need to be a much more medical intervention for it be able to ‘fix’ the hell I was living in.
We managed to find such a place, and I began sessions of EMDR. My psychotherapist agreed that she felt I probably had C-PTSD based on my symptoms and what I’d experienced, but for me, it wasn’t about labels at that stage, I simply wanted this to work, so despite it being incredibly hard to ‘voluntarily’ think about, and talk about what happened, during each session I could feel a change happening. You can read my full story of my experience with EMDR treatment here.
Following my EMDR sessions, I felt like a whole different person. I was able to be in an unlocked car alone, have a bath in an empty house, play music when I was in an empty house, go out in my garden finally, and even drive with the windows down. Some of these are small things yes, but were massive changes for me. I was able to return to work and be ‘normal’ me again – I could do EVERYTHING I could do before the trauma again.
For me, EMDR simply took the charge of emotions away from the trauma. It allowed me to process it so it is a memory – I can still talk in detail about what happened if I choose to, but I don’t have a physical reaction to doing that anymore. Since my EMDR treatment finished over 7 years ago, I’ve never had any PTSD symptoms since. No flashbacks. No panic attacks. No nightmares (other than regular ones of course!). NO waking my husband up in the night to check a noise. Nothing.
After I returned to work, and became the ‘old me’ again, I decided with a friend that we’d run the Edinburgh half marathon the following year. She’d been having some mental health issues herself, so decided to run for a mental health charity. I proudly stated ‘Oh I’ll do it for a PTSD charity!’… and then realised that there wasn’t one!
In that moment, I sent my mum a text. “I know what my purpose in life is”.
I knew that there was a possibility that I could ensure that people didn’t feel as hopeless, helpless and isolated as I did in PTSD. I knew that if I could share my story, then people could see that there was hope. That things could get better, and also to help reduce their feelings of guilt and shame. ANYONE who has experienced trauma can develop PTSD or C-PTSD and so I knew that there was an awful lot of people out there who needed to hear that Tomorrow could be a new day! Not even my GPs knew enough about it – and I’m not willing to accept a lack of knowledge for others in the same situation I was in!
And so, I decided to start a charity, PTSD UK. For me, it felt like an obvious route – I knew this was bigger than anything I could achieve through a blog or simply sharing my story. My previous jobs in marketing, PR, website design and building, social media account management and my science degrees, meant that I was able to pull together a brand, logo, website and everything else we needed, fairly quickly! The content on the website was all written by me – so had a solid basis in science and research, but written in a way that anyone could understand, and more importantly, with a deep, personal understanding of what it’s actually like.
I built up and ran the charity in my lunchbreaks and evenings – putting all the hours I could into making life a little easier for others who were feeling like I did – and it seemed like it was helping!
Over time, we’ve gained some amazing supporters and fundraisers which allowed me to give up my hard-earned career to run PTSD UK as my job. This is bigger than me and my own personal career aspirations, so I knew it was the right thing to do. Having a young family means that it can be a bit of juggle, but I’m hoping as PTSD UK expands, we can continue to make a real impact and support the people who need us.
Ultimately, I’d love for PTSD UK to be able to supply support phone lines, help fund treatment options, have a live-in treatment facilities and much more – and I know we’ll achieve that one day, but for now I’m so grateful to all our supporters, and my friends and family who’ve got us this far and are able to really make a difference.
Jacqui, Founder of PTSD UK
Are you looking to fundraise for PTSD UK?
THANK YOU!! We are a small charity so our main goals at the moment are to increase awareness that we exist (so people can get the support and information they need) and to maximise fundraising to allow us to achieve our mission of supporting everyone in the UK affected by PTSD, no matter the trauma that caused it.