We Don’t Talk About: the realities of life with chronic disease
After her diagnosis with Multiple Sclerosis, Astrid Edwards struggled to find stories from real people about their experiences with chronic disease. She noticed a tendency for those with chronic illness to 'remain positive and to keep up appearances', which often came at the expense of them sharing insight into their grief and into their day-to-day reality.
Over the past year, Edwards has been interviewing people with chronic disease, asking them to share realistic insight into their conditions, and compiling their responses as part of her 'We Don't Talk About' project. 'The goal is not to be bleak,' she explains. 'It is to be honest.'
In this interview, Edwards talks to Ashleigh Hill-Buxton about the complexity of life with anorexia.
Ashleigh is 25 years old. Petite, pretty and obviously a determined perfectionist, she is already an old soul. She overcame anorexia and completed one year of a degree in journalism, before dropping out of her second year when her ex-boyfriend took his own life. Two years later, she is building her first home.
Growing up with depression and anorexia
Mum is a family lawyer, and Dad a truck driver. I am the eldest of their five children, with three brothers and one sister. I still live at home, but only until the house I am building is ready.
We were, and are, a happy family.
But I’ve always had depression and anxiety in me. As a teenager, I would sleep ten hours and wake up tired with the world. I was formally diagnosed with depression back then, although I wasn’t medicated.
I have always been a perfectionist, and I was recognised as gifted in school. But in my quest for perfection and with my desire to be the best, I became anorexic. I stopped eating in my last year of school, after I fell out with my friendship group.
My mother helped me to seek treatment. At the end of that year she took a photo of me sitting on the beach. She took it from behind, and you can see every one of my vertebrae and most of my ribs. It is not a nice image. After that, my GP took me to a psych ward to show me where she would put me if I didn’t start to help myself. It worked. I slowly started to return to a healthy way of eating, and even now I feel lucky I recovered.
But anorexia is not the defining story of my life.
Surviving someone else's suicide
Dean died on 17 March 2013.
We first met in primary school, and then years later when I was 21 and he was 23. We had lost touch through our high school years when I went to a private secondary school and Dean to a public one. I knew he was nuts when we re-met, it was obvious. But it didn’t matter.
The thing that I loved, that I needed, was that Dean understood the darkness in me, the ugly parts of me. He understood the girl who had once chosen not to eat, the girl who felt the darkness in the world. I was drawn to him.
And Dean was good at love. Flowers, letters … He would have walked across broken glass for me. And he was fucking handsome. Blue eyes, muscles, scars galore. A smile that was both sad and happy ... and that smile is how I knew he was broken.
Dean was a self-harmer, and he abused alcohol and drugs. He was diagnosed with depression and bipolar disorder, and took Effexor for the former and Seroquel for the later. He saw a counsellor a few times, but those sessions had little impact. He went for me, not himself. He preferred to fight his battles alone.
He became my world when I was with him. I wanted that, at first. I thought I could keep him afloat. But soon I was sucked down. Soon, it wasn’t my choice. He said he couldn’t exist without me, and I thought he might attempt suicide if I wasn’t there. He took over my life.
God, the battles that we had … I spent my time trying to fix him. I was hell bent on trying to save him from himself.
We were together for 18 months. Our song was ‘Wicked Game’ by Chris Isaak, and the lyrics tell you everything. ‘The world was on fire and no one could save me but you … I never dreamed that I’d lose someone like you’.
It was always tempestuous, and sometimes dangerous. The number of times I scrubbed blood out of the carpet ... (Ashleigh shakes her head when she says this, remembering the practical reality of looking after someone who didn’t want to live).
Dean stayed away from substances when I was with him. I wouldn’t tolerate them. But when I was not there he went straight back to them. And so I watched him decline. By Christmas 2012 I realised the toll the relationship was having on me. I started to pull away.
At the end of January 2013 Dean slit his wrists in the bathtub because I wanted to sleep after an exhausting day at work instead of visiting him. He sent me a goodbye text, so I threw on some clothes (there was no time even for underwear) and drove to his house, calling 000, his mother, anyone on my way. We found him unconscious in the bathtub.
That was one of the toughest nights of my life. I accompanied him in the ambulance and to the hospital. He refused to be sedated or to let anyone stitch his wounds. He refused all help.
Dean spent more than three weeks in the hospital, and I visited everyday after work. I didn’t want to, but I felt I had to. And I came to hate my life. I knew I couldn’t help him and I needed to start helping myself.
Those close to me knew that before I did. My parents wanted me to distance myself from Dead long before I did. While they were sad to witness what was happening to Dean, they could see what it was costing me. At this point, my siblings and I had almost no relationship, and I wasn’t close to my dad either. My mum was at the end of her rope. Everyone was extremely concerned for my wellbeing.
I drove him home from hospital. At least, I tried to. In the car I told him that, now that he was out of hospital, our relationship needed to be on hold while he focused on his health. Dean tore open his bandages right there in the car, opening his half healed wounds. I turned the car around and drove him straight back to the hospital. But the hospital wouldn’t take him. So I took him to his father. Days later he ended up back in the hospital after more self harm.
His father called me and told me to stay away from his son. I agreed; I knew the relationship was toxic. Dean didn’t stop trying to contact me, but I didn’t respond. I needed to heal.
After he was discharged again, he ended up living at a friend’s mother’s house. His parents couldn’t (or wouldn’t) look after him. His parents were divorced, and they had spent a lifetime looking after Dean. They were at breaking point … They didn’t know what to do with him.
One Friday he called and called and called until I answered. He told me to visit him. I said no. He threatened to jump in front of a train. I didn’t know what to do, so I hung up and I called both my mother and his. My mother took my phone away from me for the night. I understand why, she was trying to protect me. Dean kept texting throughout the following day, but I remained faithful to my mother and did not respond. I did, however, contact his friend and tell him to look out for Dean. The friend went to check on him, and reported back that he was ‘drunk but fine’.
I didn’t hear from Dean on Sunday, and I was surprised but pleased. I thought he might be coming out of it. But at 3:30pm that afternoon, Dean’s mother called. I was at work and I didn’t answer, but she kept calling. Then his father started calling. Eventually I went to the bathroom (we were not meant to take calls at our desks) and answered the call, and his mother’s partner said there was something they needed to tell me.
‘I’m really sorry that Dean has passed away’, he said.
I hung up. I lost it. I collapsed in the bathroom sobbing. My manager took me home, and I stayed in bed with my best friend and mother crying for the next two days.
At that point I didn’t know how Dean died, but I imagined it.
There was guilt. Profound guilt. He needed help, he needed saving. And I didn’t help him, I didn’t save him.
I later found out that Dean overdosed. At first they weren’t sure, as the scene looked suspicious. I had to talk to police and tell them what I knew. It was traumatic. The autopsy confirmed that he had taken 250 pills – Effexor and everything else he had around.
I have not spoken to the friend who deemed Dean ‘drunk but fine’ about it. There is nothing to say.
But I did speak at Dean’s funeral; I was determined to.
The funeral was terrible; funerals for young people are terrible. And no one really understood. His father came the closest, saying ‘Dean had a cancer in his mind’. Everyone else just kept referring to a ‘tragic accident’. But it wasn’t an accident, Dean took his own life. And although his absence causes other people pain, I think he is better off ... Dean hated being alive.
Being an old soul in the adult world
Dean is dead. We buried him. But that doesn’t mean he is gone, and it definitely doesn’t mean the grief is gone.
Most people I knew had never liked Dean, and they didn’t understand my grief and why I mourned him. They thought he met the end of the path that he had so obviously chosen.
'I still think about Dean. He is the ink stain on my white sheet. The pain has passed, but the memory remains.'
And that is when I started to battle for my own life.
I flirted with death. I thought about dying … I imagined myself in a train wreck. I imagined driving my car onto train tracks, or jumping in front of a train when I was waiting to catch one to work. I just lost the will to live. I had suicide ideation, but I wasn’t suicidal. Suicide means an active wish to die. I was more passive … I just didn’t want to live anymore.
My relationships with other people, including my siblings, went downhill. My mother pushed for me to see a psychiatrist and to take medication. She was convinced there was something wrong with me, and I started to think so too. And so after Dean died I took Prozac for a year.
There is a difference between grief and depression. But for a while I was a mess of both, all mixed up together. I was angry that people didn’t understand – I was broken. To this day people hold that time when I was angry and sad against me. The biggest problem people had with me was my lack of filter. I just didn’t care about the little things anymore; the polite pleasantries we are all supposed to conform to. I didn’t have the energy. Even today, I rarely have the patience for them.
The death of someone young is different. There is depression and grief, of course. But there is also a feeling of injustice, of someone gone too soon …
But the death of someone you loved intimately is different too, someone you loved and tried to save. I grieved for Dean, I grieved for our relationship, and for what might have been. But I also grieved for my failure to save Dean, for the fact that I was still here and Dean wasn’t. For the fact that no one could have saved Dean except himself, and he didn’t want to. And I felt guilt. For there is a guilt to surviving, to being the one left alive.
Seeing the psychiatrist didn’t help, and ultimately the drugs didn’t either (although I think the fact that I went along with what the medical profession has to offer gave other people comfort).
Instead, I learned to help myself. I take joy in the little things these days – I cook, I exercise, I read, and I spend time with my friends, especially Liana. The day I realised that the friends who had stuck by me were true friends was wonderful. Liana is my best friend, but more like an older sister. I can’t imagine my life without her. She is one of the few to understand why I am still sad, and why I still need to talk about it.
And that is what brought me back to where I am now. I collect happy moments, and I don’t focus on what is in my head.
And perhaps most importantly, I acknowledge what has come before. I live by this Lemony Snicket quote:
What happens in a certain place can stain your feelings for that location, just as ink can stain a white sheet. You can wash it, and wash it, and still never forget what has transpired – a word which here means 'happened, and made everybody sad’.
I still think about Dean. He is the ink stain on my white sheet. The pain has passed, but the memory remains. People think that the door of that chapter of my life is closed, but that door is warped now … It will never close fully. I have had no contact with Dean’s family. Our contact ended naturally. I think they know I still visit his grave.
I stopped taking the drugs a while ago. My mum doesn’t know I am not medicated … She will find out when she reads this interview. I told my grandmother a few weeks ago. And I hope my family knows I would never put my them through what Dean put his through.
I think the question of whether to take medication is a personal one. For me, medication is only a temporary solution to a lifelong problem. And so I am trying to live my life with a lifelong solution. I was anorexic as a teenager, and depressed as a young adult. I need to find the right path for me.
My new partner, Kinsleigh, is seven years older. He works at the bank too, and when we met I told him I was fucked up … But he still thought I was cute. He had a rough start to life and has a maturity that I crave. His sister committed suicide nine year ago, and so he understands. He sees the dark in me, and for that I am grateful. He just lets me be.
Kinsleigh’s birthday is 17 March … the anniversary of Dean’s death. And so I have come to terms with the fact that Dean will always be with me. Everything he did made sure of that, although I sometimes wish he hadn’t.
Where I am going now
Like all good things, I am a work in progress.
I am beginning to understand that just because this happened to me doesn’t mean I am worth less.
For anyone feeling like I did, I want to let you know that you shouldn’t be afraid to let people know you are back to your old self, or not, as the case may be. Because an experience like mine, it stays with you. My time with Dean is a part of me. To have never experienced that time … I would not take it back.
'Like all good things, I am a work in progress.'
As for the future … I love Kinsleigh. But if I have children, they might end up like me. And that is ok. Because I will teach them that they can come out the other side. Just like I did: I am now a functioning adult, and I do adult things (she says, laughing).
I would like to finish my degree, but there is no time. I am building my first home from scratch ... But in the future, yes, I would like to go back to university.
The good thing about my story is that I have come out the other side. It is possible. I now have mental strength that many people don’t have, and my perspective is different, because I know how real, how permanent, loss can be.
And I understand that I have a choice, we all do. It took me a while, but I chose to live.