Virtual Open Mic: Ellie Wildbore

Warning: This Open Mic contains self-harm, suicide, mental health crisis, and burn injury content.

So amongst those who know me, it isn’t a secret that I am burned. It also isn’t a secret that part of my Complex-PTSD is centred around fire. And I’ve struggled for over 8 years with the consequences of this and how much it disables me in everything I do in life. But its only last year, 2023 that I managed to bring myself to access burns-specific support. So why has it taken me so long? The short answer is shame. The long answer I don’t think is possible to verbalise. But I have come a huge step closer to that, after one very important weekend in September 2023. My burns were self-inflicted. At very low points in my life I have used fire – or other things that burn – to hurt myself. I didn’t need much help to feel incredibly guilty about this. But I (unfortunately) was helped along a lot by a rhetoric around me at the time that it was my fault I couldn’t control my “impulses” (my self harm is not impulsive, its compulsive – but thats another story) or my emotions. Why on earth then would I ever, ever think that I had the right to access support from the burns community – where so many people had no choice in what happened to them? When I effectively “chose” to be burned? Although I speak openly about my mental health in a variety of contexts because of the job I do (working in the UK National Health service (NHS) as a Lived Experience Research Ambassador in Mental Health). This includes improving our services and education of staff. But I tend to gloss over the “I set myself on fire” thing. Even in terms of living day to day with my PTSD I don’t easily volunteer that information – and although I may tell people that is connected to my PTSD – I don’t bring the actual event up that much. I struggle so much with dissociation and flashbacks thats its difficult for me to actively choose to think about it, let alone tell my story. In 2015, whilst an inpatient in a psychiatric ward. I set myself on fire. I suffered from third degree burns on my torso and leg, and lesser-degree burns on my arms and hands. I also began to suffer with what was to become debilitating PTSD related to the event. I was blue-lighted to hospital and taken to the resusitation room where my burns were treated initially. Upon return to the psychiatric ward, I was discharged 2 days later into the community with little to no mental health support and set fire to my leg outside A&E (the UK equivalent to the Emergency Room) a few weeks later. I was still very mentally unwell. A combination of me being unwilling to accept what had happened, unwilling to engage and a lack of support available or offered to me, meant that although I received the physical care I needed for my burns in 2015, I did not receive any of the psychological support I needed. I spent over 4 months in bandages with multiple hospital visits a week and district nurses looking after my wounds at home, followed by a year in pressure garments (a vest and a leg sleeve) before I disengaged with this too. I think also there is a presumption that if you have done it to yourself – it won’t affect you psychologically in the same way. That is so wrong. For 8 years I have been actively disabled by my PTSD. I now know (though only from work done in the past year in therapy), that my trauma around fire and the feelings that came from the experience of being on fire – goes way back before November 14th 2015. In actual fact – its not that surprising – understanding what I do now – that fire was my weapon of choice. But still, despite starting to understand this my shame and guilt continued. In April 2023, following a series of events (including a Doctor refusing to suture my face because (in his words) “you have plenty of scars, one more doesn’t matter” - despite a significant reduction in self-harming behaviour over the years. I finally gave in to the compulsion I had had since 2018 to create a burn on my face. I have had a long history of harming my face – also stemming from some specific trauma. I did not stop until that exact compulsion, and image I had had in my mind and tried to push away for so long, was complete. And this involved repeat incidents – in total I burnt my face using strong alkaline chemicals 7 times before seeking medical treatment. Burn upon burn upon burn until I knew I was done. When I had finished I had a 3rd degree burn the size of my hand on the side of my face. The right hand side of my entire head swelled to twice the size. I was admitted to hospital. We didn’t know if I might have lost some of the vision in my eye. I already hated my face – I’ve been actively hurting it and trying to make it unattractive to unwanted male attention for years. Now I was unrecognisable. Swelling dies down. But serious burns don’t just go away. After nearly 6 weeks with a big, black patch of dead and burnt skin on my face, I finally made the decision to accept a skin graft. Medically it was a totally obvious decision. Psychologically, not so. Why would I do this thing that might make my hated face look better? Why would I do something that was looking after my face? I was already struggling with the care I needed to give my burns. Having healing (or not healing as was the case) burns is a full time job and even bathing it reduced me to tears every time and I struggled to do the facial exercises set for me by my OT. To make the decision to have the graft I did a lot of soul searching, I spoke to many people I know and professionals in my physical and mental health care, I looked deep inside myself. I really appreciated the friends that supported me through this time with dark humour. “Ellie’s dead face” became an entity in its own right. I knew, that making this decision would make or break where I went next. And eventually I took the plunge and on 9th May 2023 I had a full thickness skin graft – replacing the dead (and by now pretty stinky) face with skin from my right thigh. I struggled with the surgery and the aftermath. The thought of someone having touched my face and had control over what it was going to look like terrified me. Part of me was worried it would look horrific and part of me was worried that it would look like a perfect face again. I don’t know which scared me more. Dressing changes were traumatic – I dissociate as soon as anyone touches my face and can become very distressed and volatile. But we managed it, with careful care from the burns nurses and my wonderful carer, Shami. I broke down before the first time I had to look in the mirror. But as soon as I did, something inside me let me know I’d made the right decision – to care for myself by accepting the graft. And this was the start of considering moving forwards. In a roundabout way I had to get burnt twice to start to heal. Over the next couple of months I opened up more about fire in therapy. Signposted by the burns unit I first received some support from Changing Faces https://www.changingfaces.org.uk/ which I found really helpful, before eventually taking the plunge and joining an online support group for burns survivors. This was a massive step as I hadn’t accessed any support before in 8 years. But I still felt like I shouldn’t be there. So I felt even less like I should be an attendee at Dan’s Fund For Burns (DFFB) Adult Burn Survivors weekend. https://dansfundforburns.org/ I made the decision to go but in my head I was going to back out. I couldn’t go. It was a place for real burns survivors, not people who had done it to themselves like me. How could I possibly have the audacity to be there when other people hadn’t had a choice in being burnt? Even when I arrived, at a beautiful hotel in the Surrey hills, I was panicking. my anxiety was sky high. The first evening I was plagued with thoughts convinced everyone would be saying “she shouldn’t be here – she did it to herself, she doesn’t deserve to be here”. Even though everyone was lovely, I worked myself up to convince myself that when everyone found out the truth, I would be thrown out and rejected. For the record – everyone was actually lovely and these are all my projected thoughts and fears! However, despite the lovely evening and brilliant pub quiz, I found myself dissociating quite a bit and struggling to stay grounded. My traumatised mind did not want me to be there. Although I really appreciated that everyone was talking openly about scarring and burns, I struggled to tell many why I had burns. The Saturday morning started off (after a beautiful outdoor yoga session), with a talk from Polly, the founder of DFFB. She had been in the Bali bombings, where she had lost her husband, Dan, along with several friends. she subsequently set up the charity in Dan’s name that has raised over £2.9 Million in 20 years and provides burns support, befriending, financial support and more to people across the country. After this, the programme said “Open Mic”. I wasn’t 100% sure what this meant, but it turned out to be an opportunity for people to share their stories. And this is when the magic really began. I am used to the mental health world. Where confidentiality means you have no clue what is happening for anyone else. Self harm, scars, stories of events, triggering topics and trauma are taboo. Judgement is rife (from service users and staff) and often people are oddly competing to story top or “be the illest”. Everything is incredibly censored. I became acutely aware this weekend that even when I am sharing my mental health story to educate – I censor it heavily for the sake of other people. This was the exact opposite.

Disclaimer: The stories featured on this website are personal accounts shared by individuals from the burn community. Each burn injury, recovery journey, and healing process is unique. These stories are meant to offer connection, insight, and hope but are not intended as medical advice. What worked for one person may not be appropriate for others. The perspectives shared in these stories do not necessarily represent the views of Phoenix Society for Burn Survivors. If you have medical questions or concerns, please consult a qualified healthcare professional.