Every single one of us has a story. We’ve all been on a journey since the day we were born. We all have anecdotes of funny things that have happened. We’ve all had times where less-funny things have happened and life has thrown us a curveball which has changed the direction we’re travelling in.
But when our journey involves mental illness, it can be hard to talk about. Sharing it becomes a struggle. People ask us what we did last weekend and we haven’t got a clue how to answer because last weekend we were struggling to breathe under the weight of depression/in hospital/hiding under a blanket or something. You can’t really answer the question ‘wheat have you been up to lately?’ with ‘trying to survive’.
So our story becomes holey. It contains blanks. Black holes of difficulties, tears, resilience, strength, and courage.
My personal story is 24 and a bit years long. It’s had many ups and downs. It’s had lots of twists and turns. At times it’s been a comedy, there are times when it’s perhaps been more of a tragedy. But it’s mine.
I’ve been very open with some parts of my story (you can’t really hide the fact that your Mum is dying, or that she’s died). But there are other parts of my story that have remained hidden. Bits that I haven’t wanted to admit to myself, never mind anyone else. Bits that I’ve felt ashamed or guilty about. Things that get so messy in my head that I don’t have the worlds to put them down on paper.
Sharing our stories can be incredibly freeing. It can feel like pushing a ten-tonne weight off our chest, standing up and announcing to the world ‘This is me! This is who I am! I’m not going to hide any more!”. But it’s also so hard. It can leave us feeling very vulnerable. In writing them it can bring up a lot of difficult things.
I wasn’t going to share any of my story today, but in seeing all of the #WeAllHaveAStory tweets on Twitter, as part of the #BigBlurtathon, I’ve been inspired to share a little bit of things I’ve previously not shared. So with a deep breath, and a heck of a lot of coffee, here goes!
I’m no stranger to mental illness, or life being a bit of a knob. I’ve had depression since a very young age – something I’ve blogged about once or twice. My Mum was diagnosed with cancer when I was 18, became terminal when I was 20, and died when I was 21 – something I’ve blogged about extensively. I’ve also had an eating disorder for about 12 years. That’s the bit I’ve not written about.
I’ve not written about it because I feel/felt guilty. I feel/felt ashamed of it. I feel/felt like it was my fault, like I was doing it to myself, like I was ungrateful for intentionally starving myself when others have no choice but to starve. Keeping it secret helped the illness to thrive and I needed the illness for a long time. For a long time it kept me alive.
I’ve not been immune from the side effects of this constant attack on my body. But I barely recognised it as anything other than “oh well, this is how life is”. The fact that I was on 20+ medications at times, was at the GP every week, had bloods weekly, never had all my bloods in range, wasn’t allowed to drive far, and wasn’t allowed to exercise or camp (among a million other disadvantages), just didn’t register in my brain as anything at all abnormal for a twenty-something-year-old. People sometimes told me that I’d end up in hospital. But I always replied that I’d had this illness for over ten years and hadn’t ended up in hospital before so it was fine. I remained “functional”.
But this week exactly a year ago, all this changed. I received a call when I was at work asking me to come in for repeat bloods and an ECG. My blood test results were not good. I decided it would be fine but along I popped. On 22nd September, I saw my usual GP and she admitted me to hospital. I was terrified. I’d never been in hospital overnight before. The following 2 weeks involved a total of 10 days in hospital over 3 admissions. I would be discharged and then readmitted a day later. At one point there were less than 24 hours between being discharged and being readmitted (and I was asleep for about 12 hours of that).
I was desperate for help. The nurses on the ward were desperate to get me help. I cried more than I’ve ever done before. Ever. (Including when Mum died). I spoke to various mental health professionals. I had panic attacks in the middle of the night. I had some incredible nurses who I will never forget. One hugged me at about 3am and snuck me a cup of tea (I was on restricted fluids) until I could breathe again. One switched the room she was covering to make sure she was my nurse.
I had some atrocious nurses and doctors. “Professionals” who treated my like a piece of dirt on the bottom of their shoe. Who made snide remarks. Who made me feel like I was undeserving, like I’d chosen to be there, like I’d be less of an inconvenience if I’d hurry up and die. Some of the mental health professionals weren’t much better.
The following few months are still a blur. I was trying to get myself stable again. I was trying to follow a meal plan and a fluid plan. I wasn’t doing a great job, but I was trying. There were things I was doing which I didn’t think others would realise were me ‘getting around the system’. There were things I was doing which I didn’t realise were anorexia not me.
In January I was admitted again. The staff on the ward remembered me. I was lucky to largely have brilliant staff this time, on both of the wards I was on. Staff who went out of their way to find food I ‘could’ eat. I had an incredible pair of mental health professionals this time, too. I was still terrified. I remember at one point telling the mental health team that the meds the ward were giving me were coating my insides and contaminating me. This wasn’t psychosis – it’s what happens when your body doesn’t have what it needs.
Unfortunately, things continued to deteriorate. I was of the opinion that I had solved all the issues I was having in a very logical way. My GP did try to explain that crawling around my house was not a solution to fainting whenever I stood up, and that actually giving myself some food/fluid might be a better plan. I didn’t agree.
Looking back on it, I could have died. I was so poorly. Apparently I wasn’t making any sense. I was days away from permanent kidney damage. I had to stop going to my GP surgery for bloods twice a week because I wasn’t well enough, and had to go to the mental health place instead. I was admitted straight from there on my last general admission.
I was absolutely terrified. Not of dying, like you might think. But of the things that they were attaching to my drip. Of the fear associated with having things in my body. It didn’t register that I was, yet again, attached to a permanent heart monitor or that, yet again, I was the youngest patient in the room by about 50 years. I was terrified and trapped and the only reason I didn’t pull everything off/out and run home, was because I knew I’d get sectioned. The only time I was even remotely scared for my health was when all of my muscles seized up and I couldn’t move and struggled to talk.
Again, I had a mix of staff. There are some staff who I am forever indebted to. Who showed me pictures of their cat and spoke to me like a human. Staff who came back at the end of their shift to wheel me down to the gift shop to buy puzzle books. An amazing mental health worker who told me that I was “scared but motivated, and that’s the best place to be when going inpatient”. That got me through my first few weeks on the ED unit. There were also some horrendous staff. There are things from all of my general admissions that at some point I need to work through and process, because I still occasionally have nightmares about them.
You would think, given all of this, that I might have realised that friends and family might realise something was up, but I didn’t. I was largely convinced that I looked normal and that I was an excellent secret-keeper. I wasn’t.
A week later I was admitted to an eating disorder unit. It was the hardest 6 months of my life. I’ve gained 75% of my weight again. I’ve cried (a lot!). I’ve panicked. I’ve felt hopeless. I’ve eaten things I hadn’t eaten in years and years. I’ve sat with the most uncomfortable of uncomfortable feelings. I’ve talked. I’ve opened up. I’ve worked so unbelievably hard. I’ve developed a (real!) laugh. I’ve found hope. I’ve found some moments of peace. I’ve found my fight. I’ve found my sparkle. I’ve found my will to live.
My story is messy. It’s hard to read. It’s hard to remember. There’s a lot I don’t remember. It’s a bit of a disaster zone at times.
It’s the story of a girl who was lost. A girl who wasn’t remotely interested in being alive. A girl who thought that life couldn’t change. A girl who thought it was as good as it was going to get. A girl who was destroying herself to cope with a world that felt un-cope-able-with. A girl who didn’t believe in recovery.
But it’s also a story of a girl who didn’t get home until almost 1am last night after a meal out with colleagues in which she laughed for about 4 hours straight. It’s the story of a girl who went camping over summer for the first time in years. It’s the story of a girl who spontaneously decided to go to Whitby one day because she wanted to see the sea. It’s the story of a girl who jumped from rock to rock at Brimham Rocks a few weeks ago. It’s the story of a girl who went out, got tipsy, and danced for hours a few weeks ago. It’s the story of a girl who jumped in her car and drove 4-5 hours to Bristol because she wanted to see her cousin and his family. It’s the story of a girl who is now a sister, a friend, a daughter, a cat-mother, a granddaughter, a niece, a colleague, and a fighter.
It’s the story of a girl who now believes in recovery.
I hope that however hard my story is to read, that it’s one of hope. I hope that it shows others that life doesn’t have to be this way. That there is a chance (however small) that things can get better.
I also hope that my story shows what a difference good professionals can make (and that it prompts those professionals with prejudices about eating disorders to have another think). I wouldn’t be here without some incredible professionals who didn’t give up on me. But more importantly, without the most unbelievably amazing friends and family a girl could ever ask for. I wouldn’t be here right now without some amazing nurses and doctors, some amazingly lovely fellow patients on all of the wards I’ve been on, and my friends and family.
This is just one chapter in my story. There is so much more to come. It’s not always going to be easy. I’m not ‘fixed’. I’m not ‘cured’. I’m still on 10+ medications, under the mental health team, and have regular bloods and weight checks, and have to do things daily to keep myself afloat. But I’m excited for the future, now.
I’ve chosen to own my story and I’m excited to find out what happens next.