PTSD: A lifelong condition
I’m not usually shy about discussing my condition. Anyone who follows me on Twitter sees multiple tweets from me being honest about my post-traumatic stress disorder (PTSD).
What I’ve been through gives me daily reminders that life is too short (as am I) to be embarrassed about such things. These days I come across as confident, cocky and pretty much unable to hide my feelings. The gear change of this persona is enormous. It still also hides a multitude of sins. I am definitely not graceful like this one, but I’m paddling like a swan. I’m covering up fear so much of the time. Tangible, visceral fear.
I have complex, chronic PTSD. I will spare you the gory details that haunt me, but the birth of my son was the most traumatic day of mine and my family’s life. I have to emphasise that this was a very rare event, but it was one which very nearly cost me my life. The cause of my traumatic response was a four-hour fully conscious operation, in the middle of which I very nearly lost my life. All witnessed by my terrified, amazing husband, who was holding our newborn throughout.
I heard and felt everything that was said and done in those torturous hours, which is a very long time. It’s a myth that you pass out with pain. That is one thing that will stay with me for the rest of my life. The anaesthetic wore off before the operation was finished. My fear was real. I was dying. I spent several days in intensive care (and had another emergency operation) and then was moved to the high dependency unit, before I pretty much discharged myself from an unsupportive, emotionally damaging hospital.
The shining light was that my son was healthy. But I was not. I was extremely poorly. And as lots of women sadly know, because the baby is healthy, we are supposed to be grateful and carry on regardless. My life changed forever; I was terrified for so much of the time. I was convinced I was still dying. Your brain just can’t recalibrate to feel ‘safe’. I’ve had nine operations since, with the last one in May being major emergency surgery. I relived so much, yet again. ‘Feeling safe’ is not usually an option for PTSD sufferers. A safe place doesn’t necessarily exist because the lack of safety is constructed by your own mind.
I had a supportive, caring network who genuinely, repeatedly, saved my life for the next several years. I was in total shock, my body extremely damaged, and I was unable to get the mental health support I needed. Time and time again I was rejected for treatment and left to cope on my own. My flashbacks were incessant. I regularly relived every stage of my operation and hospital experience, and the lack of treatment and lack of care from those professionals who were supposed to be looking after me.
I scraped through each day and crazily returned to work as a senior lecturer at De Montfort University when my son was 9 months old. Very soon I discovered that the trauma my brain was experiencing had eradicated a large part of my working memory. I walked into a lecture theatre with 180 undergraduates and discovered I had lost the majority of my subject knowledge. This was another life-changing moment where I stood in panic as my beloved career imploded. I felt like I’d let everyone down, again.
Some research likens the effect of PTSD to brain injury. Loss of cognitive function, memory and processing is very common. Often, I can’t find words, sometimes I can’t talk (yes, I know what you’re thinking… you don’t often witness that!). My kids get so frustrated when I ‘can’t find my words’.
I had to go off sick and then several months later took redundancy. I had already given up my beloved PhD. But I was incredibly lucky to gain a job at Loughborough University, where I had worked previously for over 10 years. And that is when my recovery chances increased. From the moment I returned to campus, colleagues were welcoming, friendly and supportive. It took huge courage to explain to managers my condition and needs. I hid it from most people, I felt so ashamed. PTSD is a hugely misunderstood condition and mine was compounded by a traumatic event (a serious sexual assault) in my 20s which my brain decided to reignite. I was embarrassed, ashamed and still rather unwell. My manager was fantastic and the empathy he showed turned him into a lifelong friend. Being in such a professional environment helped me enormously. As luck would have it, I also appeared to be good at my job.
The effects of PTSD can be physical, mental and emotional. In meetings, I doodled furiously to distract from the twitches and tics that PTSD can give you. I find them hugely embarrassing. I found coping mechanisms, I had to survive. In any meeting room, I would find a spot where I could see the door as I always needed to know I could ‘escape’. I was overwhelmed by what I perceived, to be everyone’s greater capability to do their job. But I loved coming to work, I loved my job. But I’d still sit in the car and cry all the way to work, while my hubby told me I could do this. It was just a desperation to feel safe.
Colleagues will never know the difference they made to me in the early years of my trauma. It was literally what spurred me on to get myself into work the next day. A smile from the right person would calm me so much.
Now I support students in need and it’s truly amazing to give back to those who are struggling. Reassuring them that it will get better with the correct support. And witnessing that this institution does give the correct support. My previous academic department encouraged me to dip my toe back into teaching. I had missed it greatly but had given up all hope of being in a lecture theatre again. The thought was terrifying.
‘Terrifying’ is an overused word for people who have experienced trauma. However, I put on my big girl brave pants and gave it a go. The buzz was amazing but mixed with my continual overproduction of adrenaline it made life rather exhausting. I’d come home extremely tired and unable to verbalise at all. I used my negative experiences to encourage students to see the bigger picture, stop focusing on the next goal and enjoy the moment. They had worked so hard to get to Loughborough so I wanted them to enjoy every minute and stop pressurising themselves for the next goal.
I greatly enjoyed the connection with the students I taught. Sometimes I was on crutches, sometimes I would have to sit to give the lecture – the pain was excruciating – but I really wanted to help them learn. I was passionate that we could teach and train the next generation of criminal justice practitioners who would in turn make other people’s lives better. Students with high levels of anxiety seemed to appreciate that their outwardly, confident, mouthy lecturer admitted that it’s often an act and there are challenges we all need to overcome to get where we want to be.
Speaking up when I need a break is not easy for me, but when I did colleagues supported me. You don’t have to scratch too far beneath the surface to discover that we all carry demons and challenges. I genuinely believe the more honest and open we are, the better it is for everybody. I can only cope by being honest. Some of my colleagues have had mental health challenges too, and if needed, we’d seek each other out for a proper bear hug or a quick text asking for help. I’ve been rescued from the corners of offices and meeting rooms more times than I remember by friends who work on campus. Literally huddled on the floor, too scared to move. Crying, then standing up, walking out, straight into chairing the next meeting. This was the only way to show myself I was safe, capable and still here.
PTSD and managing flashbacks means you live a double life. A traumatic life and your practical life. I’d lie awake at night, so scared about how to cope with the next time. I’d be physically sick with fear in the morning. My biggest fear was having a meltdown in front of a colleague. Yet when I deal with a student having a panic attack, I’d tell them not to be worried or ashamed by how it looks. Why do we not use our kindness on ourselves?
I force myself to keep going. And I’m incredibly mindful about my surroundings: trying to concentrate, sometimes using my phone as something to physically look at rather than make eye contact. Whatever your coping mechanism is, it’s valuable. Just find what works for you.
My physical pain reached record levels when I was diagnosed with fibromyalgia. My own personal experience doesn’t find that label particularly helpful, my explanation of that definition is pain, pain and more pain. And pain that people couldn’t help me with. It was unexplained pain. We live and work on a campus that celebrates physical achievements. I watch other people exercise and it makes me genuinely sad. One day I had to drag myself up University Road hill to a meeting, it took nearly 20 minutes. At the same time, a very fit and healthy-looking student ran up and down the hill continually. I just cried. I cry when I see people completing marathons, everyone celebrates. Yet my marathon was on the operating table, just without sponsorship, the pride of others and wearing a hospital gown instead of a vest.
I like problems I can fix easily, but now I had two chronic conditions that weren’t so easy to fix. I knew I just had to keep going. My kids deserved an example of a working mum. I was incessantly patronised and misunderstood by medical professionals. Then they read my medical notes and I had to talk through the shock they experienced of what had happened to me. I was told repeatedly that they had never heard of an event like mine. Often they were surprised that I held down a job… I often feel the same!
We are blessed with a beautiful campus at Loughborough, and I have often found pockets of calm to hide in. The Chaplaincy, the Memorial Garden, or any other quiet, green corner of space on this campus can reset your day. I knew supportive colleagues I could call if I was having a wobble, and this happened often, but I was never judged.
I strongly encourage anyone suffering from any mental health issue to reach out to the support we have here. No institution is perfect, but we have the right people trying hard to do the right things for the right reasons. I value ethical and moral integrity and I have plenty of colleagues who fulfil that. That’s not as common as it should be.
I know that my PTSD is lifelong and some days I can’t face that. Over the years I have mastered the art to continue conversation even when my mind is replaying the trauma. I do sometimes wonder what my face is doing and hope that people don’t realise what’s going on. These days I cope and importantly when I don’t, I speak up.
I will never, ever forget my lowest points. There were many. PTSD is an incredibly cruel condition that tethers you to the event you most want to forget. It strikes through treacle with a cartoon baddie at your heels. It’s unrelenting. Feeling my own death was real. I will never forget that, ever. The trick is not to give it airtime if chairing a meeting. It must be banked until later, ‘later’ is never fun.
Being part of the Staff Inclusivity Network has given me an opportunity to be honest about my genuine desire to progress in my career, which is something I didn’t consider to be a reality several years ago.
Please do reach out if you think you need it. And don’t judge a book by its cover. Trauma affects people in such different ways, there is no normal and there is no rule book. But I try to remember that there is always hope. I am not special or different, my challenges are not greater than anyone else’s. I survived and I am truly grateful, I just wish I didn’t have it. I once likened it to having to take an incontinent, smelly, unpleasant, aged aunt around with you all the time! A constant unwelcome presence that shouts unwanted comments in your ear, but one that you must get used to being there.
I won’t even talk about how to cope with it during a pandemic. It was interesting to watch the rest of the world understand the concept of continual fear of death, isolation, and not being allowed to leave the house. My treatment ceased instantly, and I have still not been able to fully return to it.
It’s taken huge guts for me to write this and I imagine like the other blog writers, I have genuine concern about how I will be judged.
My kids say they are proud to be part of the Loughborough family and watching them grow up around my safe space is unbelievably precious. To think I might not have been part of their lives is unbearable.
Any staff member with a mental health condition is welcome to join the Staff Inclusivity Group, which advocates for equality in the workplace for colleagues with physical or invisible disabilities. The group is also a place to seek support from one another and challenge University policies and practices.
Equality, Diversity and Inclusion
Reflections, comments, discussion and opinion on EDI topics from Loughborough University staff and students