TW: Self-harm, suicide, mental health crisis, psychiatric ward, burns, fire. This is a graphic post.

So it isn’t a secret that I am burned. It also isn’t a secret that part of my C-PTSD is centred around fire. And I’ve struggled for 8 years with the consequences of this. But its only this year, 2023 that I have accessed 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 came a huge step closer to that this weekend.

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 context including education of staff, 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. 2 days after the fact, I was discharged to the community with little to no mental health support and set fire to my leg outside A&E a few weeks later.

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 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 this year, 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”. 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 of 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. People stood up with the microphone (or without, or sat down, or stood at the back – whatever worked for them), and spoke, honestly about their stories. Their injury, what happened, how they were burnt, how much they were burnt, the recovery process, trauma, people they’d lost, things they’d gained.

Even 3 months ago I would have not have been able to sit in that room. I have such a low tolerance for experiencing or even hearing about triggers without dissociating that I would just have not been able to be there. Or if I had I wouldn’t have heard what was being said as my brain tried to protect me.

But I heard every word. The room listened raptly to every individual who stood up there. Every member of the audience with that person on every step of their recounted journey.

And the stories, the stories were painful. They were raw. They were tragic. They were sad. They were uplifting. They were joyful. They were hopeful. They were humorous. Every single emotion a human being could possibly feel must have been felt in that 2 hour session. They were resilient. They were courageous. They were vulnerable. It was an absolutely privilege to be in that space. I won’t recount other people’s stories -they’re not mine to tell, it was a safe space for those that got it. It was an absolute honour to hear them.

Everyone had scars. And it didn’t matter if they were big or small. Visible or hidden. Whether the story was an international headline or a home accident gone unnoticed by the rest of the world. Everyone in that room had experienced their life changing forever. And the experience of continuing living in the aftermath of that event.

I’ve never met another person who knows what its like to be in on fire. Not like “shit I accidentally caught my hair and blew it out” on fire but engulfed in flames sort of on fire. That experience and the feelings that came with it are what plague and disable me every single day. And here I was in a room which was full of people who knew what that felt like (Disclaimer: this wasn’t everybody – there are plenty of other ways to obtain burn injuries – but there were a fair few). And just knowing that was healing it itself. I wasn’t alone in that experience.

I wasn’t going to speak. I didn’t think I could. It didn’t seem fair after hearing all those journeys. But there was a gap – and I somehow found myself at the front of the room. I honestly can’t remember what I said. Except I explained at the start that it was literally my job to talk about lived experience of mental health. But not my burns story, and I didn’t think I could do it. I took a deep breath and admitted to the room that unlike a lot of them, I had a choice in my injury. That in 2015, at a point in my life where I didn’t think I could get any lower, I took a lighter to my hospital night gown and set myself on fire in a psychiatric unit. I don’t really remember much else of what I said. Except that I got emotional. I am never emotional when talking about my story. I am entirely disconnected. I rambled on in what felt like a really incoherent babble before losing my way and returning to break down in tears in Shami’s arms. I’d for sure just turned a room of human beings on me – they must hate me now for what I’d done.

But then the lady in front of me turned around and squeezed my hand. The guy next to me said well done and thank you. From behind me a woman hugged my shoulders. Polly took the mic and said to the room that we all had a right to be there and deserved support.

Even me. The girl who set herself on fire.

The session continued with people telling their stories. The guy next to me got up and went to the front. He looked straight at me and said “I wasn’t going to come up. But then Ellie did, and I felt that I could too – because I too feel responsible for my burns”. His story was different to mine but he had the same feelings of shame, guilt and unreservedness because he felt it was self inflicted. After he finished speaking and returned to his seat we both told each other we were proud and shared a hug.

And in that 2 hours, everything changed. That anxiety and separateness and paranoia I had felt melted away. Straight after, and for the rest of the weekend people showed their support, and appreciation that what I did was brave. People asked more about self harm and how it worked. Another person came up and said she felt her injuries were self inflicted in a way too. One woman took me through her emotional journey as she listened to me speak – first anger towards me, then anger towards others, then empathy and finally pride. Everyone reiterated that I had as much right to be there as everyone else.

The rest of the weekend flew by. With more story sharing. Talking about scars and laughing about situations we’d been in because of them. Dark humour was rife which is my favourite way of coping with difficult stuff. There was an amazing dinner and dancing – people boogying away like no-one was watching. Because for once, no one was watching. Most of us were used to being stared at in some way because we look different. We were used to being the elephants in the room but now we were a whole herd of elephants. I wondered what the few other people at the hotel thought – being in the minority as they were not scarred.

Several more challenges presented themselves over the weekend. But unlike normal, I was able to face them head on. This weekend – where I had expected to be a dissociated, triggered mess, I was actually more grounded and in the present than I have ever been.

An amazing bunch of ladies were volunteering their time that weekend to give free scar massage. Burnt skin is very thick and tight, often in contracts causing mobility issues, pain and even limb loss. Part of scar management is massaging to help break down the scar tissue. its a different kind of massage than those you might get at a beauty place. Its something I find very hard and I think is something a lot of us are not great at doing for ourselves.

I don’t look at or touch or do anything with the scars on my torso. I’m fairly lucky as they are mainly on my ribcage they don’t cause me any mobility issues. I definitely don’t let others see or touch them. So I also didn’t expect to actually go through with my scar massage session. However Claire, the therapist who was working with me understood my fears and really put me at ease. It felt so alien, to let another person spend an hour caring for a part of my body that I resent so much for what it symbolises. But it actually felt really nice. Afterwards my scars were much paler and flatter, and to my surprise I found that I could breathe easier – I think my scar (which has contracted a lot) has actually been stopping my ribcage from fully expanding without me realising.

Anyone who knows me even a little bit knows I go to massive lengths (to the extent of being in danger or ending up homeless) to avoid triggers. But this weekend showed me that I can, somewhere deep down, do the things I avoid doing. And I did one of those this weekend.

I was sat on Saturday night between two women, chatting to one of them and we were about to retire for the night. She held a lighter out and asked me to pass it to the woman on the other side. “I can’t touch lighters” I said.

“Of course, thats fine” She replied. And went to reach further so she could pass it herself. She didn’t question my inability. she just understood.

I stopped her. No I can do this. I took the lighter and passed it to the next woman.

Everyone who knows me also knows that I go mute if I’m even slightly triggered. But after passing the lighter. I turned and said “The last lighter I touched was the one I used to set myself alight.” Not only had I touched another lighter, but I had words to explain the hugeness of what I’d done. She embraced me in the biggest hug.

I skipped all the way to my bedroom. 5 minutes after having held a lighter in my hand.

Now I’m not expecting that tomorrow I’m going to be grabbing lighters left right and centre. Nor am I going to be enjoying candle-lit baths, bonfire night, cooking myself something on the hob or shutting myself in a room by myself. But that night I proved to myself that I can do those things.

I have been stuck for 8 years. Trapped by my own fire. This weekend unstuck me. It oiled my gears just enough so that they could inch forward and I could see that there is a stage ahead. Something I didn’t know was there. But at this weekend there were people who had gone through that stage and moved forwards. There were people still on that journey. But most importantly it proved to me that it is possible. Even the most stuck people can move forward. Time heals too.

I’m so grateful to have had this opportunity. To feel empowered. To have hope. To feel like maybe I do have more control over my life than I thought. I will move forwards, and it will take time, and I will still need some help. But I will move forwards.

The next chapter is just beginning.