Eating Disorder Awareness Week 2017 began last week. I have sat down to write something in honour of this week now 3 times.
I think I am finally ready.
Awareness to me means helping bring attention to a cause, raise money, educate, and encourage empathy.
I found myself getting a bit fatigued in the last year trying to continue the fight to bring awareness to mental illness and my special interest in Eating Disorders. I was exposed to many other specialities this year through my clients, my schooling, and my colleagues and what I found was continued lack of understanding, more road blocks in getting help, and more and more disappointment. It is tragic. I have been an advocate for Mental Health awareness since I was able to understand and come to terms with my own battle. I started off extremely keen, innocent, egocentric even. I thought that if everyone could hear what I had to say that why wouldn’t they change things? After working really hard for something for a long time it is only natural that you would get a bit fatigued. What I have found in the last couple of weeks, however, is that I do have some hope—it was just being masked by a little bit of anger.
I have been inspired by the campaigns from NEDIC and the work of my colleagues on the NIED team. NEDIC has launched their campaign which is #NotAChoice. I had previously cringed when I heard the word "choice" mentioned in the context of mental illness, but I think this did the job. They are bringing much-needed attention to the fact that this is a biological, genetic, and misunderstood illness. Through asking people to tell us how their Eating Disorders are not a choice—it is working and I love it.
My hope continued when our fearless leaders of NIED went to Ottawa for their 13th time and had a very successful event on the Hill. Top physicians in the field, along with other key members in fighting for change, showed up and the event was received very well. We were delighted when Sophie Grégoire Trudeau spoke about her work with Eating Disorders and her own personal battle. This is a woman that is in a place of power, someone whose every move is watched, judged, and admired. She was honest about her battle and I was touched. That is not easy. NIED made that happen. Wendy and Lynne from NIED work tirelessly to travel and take time out of their busy schedules to attend these events and because of their relentless fight—we were able to make a big impact on EDAW 2017 by having her there.
These may seem like small steps—but we are all finally working together to make change and I can feel things starting to move in the right direction.
All of this attention puts this illness on the radar, which is so amazing. But the realist in me, the survivor in me, always thinks to myself; It isn’t enough, they still just don’t get it.
Understanding. Awareness. Early detection. True life experiences.
Being aware of how to detect this illness quickly is the only defence against it we have. Unfortunately this illness has a very strong genetic and biological component. As much as we would like to say we can prevent Eating Disorders, I personally don't think that is the case. Just like we cannot prevent cancer, we can only learn how to detect the signs early, and avoid things that could make our chances of getting it stronger. This starts with education. Educating those who are in a position to help. We need to have better training for our doctors on what an Eating Disorder is, how to detect it, and how to treat it. We need Psychiatrists to all have Eating Disorders on the radar, and not be unwilling to treat them. To know that it is not just one page in a text book, but that it is something much, much more. We need to work on the current curriculum in schools. We need our teachers to be aware and change their curriculum so that students are no longer being taught what an Eating Disorder is, tracking their calories, and measuring their BMI index. Instead they are learning about how to manage their mood, how to know how to ask for help, and what mental health looks like. Not just mental illness.
We need our parents to be confident in recognizing the signs and have somewhere to go if they are concerned and need help. This means more than anything reducing the shame. Not being afraid to be overly concerned about someone who you may see exhibiting the signs and symptoms (please refer to this website for more: http://nedic.ca/know-facts/overview).
DO NOT WAIT. When your loved one or YOU yourself are diagnosed, it is often too late in our system. We have nowhere for you to go quickly that is covered through OHIP if you are in need of help NOW. This means that we have to be conscious of being able to ask for help at the first sign of things not being right. Nobody will understand what you are going through, people will not necessarily know what to say, but please know you are not alone—reach out to someone who can help you (check the websites at the bottom of this post). Our system unfortunately perpetuates the shame because it is not made to make getting help easy. It is designed in a way that makes it very, very difficult. Watch your children, be aware of your loved ones, and know that it is always worth making someone angry if it saves their life.
Eating Disorders have the highest mortality of any other mental illness. This statistic is used often to accentuate the severity of Eating Disorders and get people talking. I wonder though, do people realize that this is not just due to the incredibly harmful effects of starvation, bingeing, and purging, but also because of suicide? This illness (not unlike other mental illness) is so excruciating that suicide is the second highest cause of death in Eating Disorders. The thoughts, feelings, painfully rigid behaviours, and impulsive nature of this illness lead people far too often to a shortened life. This should never happen.
Awareness as a survivor is different. As I started off saying at the beginning of this article, it is tough to wrap my head around awareness because I know that people do not get it. It is heartbreaking to try and help the brave clients that I see on a daily basis come to terms with the fact that they don’t feel heard. The people that I see are tired. They are defeated by the fact that no one gets it. They don’t necessarily get it either at this point, but what they do know is that they need someone to. I have to have the conversation with people quite frequently about the fact that their loved ones, their boss, their doctor even can try to get it, but will unfortunately not be able to fully comprehend and support you the way you need them to. This illness is complicated, it is secretive, and it is proud.
I have not spoken about my story in the last couple of years as a conscious choice. After much reflection I realized that I was telling the story that I felt people wanted to hear. I was editing out the things that were too hard, and I very rarely felt satisfied. I am working on reframing things, but in the meantime I will try and articulate things in a different way.
Anyone who knows me knows that I am a huge Grey’s Anatomy fan and won’t be surprised that an episode of Grey’s helped to express how my Eating Disorder felt at times for me. There is a scene in the 12th season—it is the 9th episode, if you want to look it up. Meredith (the main character) has been brutally attacked; she is left very injured, unable to walk, unable to move out of bed, and her mouth is wired shut. When I watched this scene it brought up so much emotion for me. There are scenes in this episode where there is so much anger, so much panic, intense pain, and sadness. She is chained to a bed and unable to have a voice. The symbolism behind her not being able to speak brought tears to my eyes. I felt I could relate. I feel like a lot of people with mental illness could relate. This to me was such a great depiction of what it feels like to be frantically screaming for help and no one understanding you, no one hearing you. I felt that I knew what she felt like, I remembered how it felt to be that person feeling so scared, alone, and confused.
Eating Disorders are debilitating. They take away every part of you that once existed; they linger on and morph to find new ways of creeping into your life throughout the various stages of your recovery. They incorporate fear, desperation, obsession, impulsivity, and pain. You feel depression, anxiety, compulsion, hatred, and silence all at the same time.
Eating Disorder ruin lives, and they are #NotAChoice.
I was a very shy and anxious kid #NotAChoice
I started down a path of mental illness in high school #NotAChoice
I developed panic attacks at work #NotAChoice
I started feeling good about myself due to the numbing effects of the illness #NotAChoice
I isolated from family and friends #NotAChoice
I went through a plethora of antidepressant, anti-anxiety medication changes with harmful side effects #NotAChoice
I chose my illness over my friendships #NotAChoice
I chose my illness over my relationship with my boyfriend #NotAChoice
I ruined parts of my body #NotAChoice
I put my family through hell #NotAChoice
I was looked at as a lost cause #NotAChoice
I spent holidays in Psychiatric Wards #NotAChoice
I lost months, years to treatment and hospitals #NotAChoice
My family spent thousands of dollars on therapy #NotAChoice
I went through hell in recovery #NotAChoice
I hated my body for years in recovery #NotAChoice
I lost friendships in recovery #NotAChoice
I was looked at differently by my peers in recovery #NotAChoice
I am now looked at carefully in my profession #NotAChoice
I have to live in fear that it will come back #NotAChoice
I have to live with guilt for what I did to my family #NotAChoice
I have to live in fear that my children will suffer the way I did #NotAChoice
I have to live with an experience that no one understands #NotAChoice
I am now able to say that these factors do not define me. They are a part of who I am. A very important part of my history that makes me stand here today—strong, loud, and hopeful. I live a life that is free of the shackles of my Eating Disorder. My life is unrecognizable to the person I once was.
I am thankful that I am a success story. The reality is, not everyone is. We need to do our part to open our eyes, educate ourselves, and reach out to those in need. I would not wish this illness on my worst enemy, and the purpose of a week like this is to hopefully give one person the chance to get the help they need and take that step to wellness.
Follow NEDIC, NIED, and Sheena's Place for more #NotAChoice stories.
Please join us for our 5th Annual Honouring the Journey this Sunday, February 12th. We have a wonderful panel who will share the impact of this illness on a brave mother, father, sister, brother, and spouse, all from different families. This event will not be clinical in nature; we will be truly focussing on YOU, those who are impacted by this illness. Shai Deluca-Tamasi will also be joining us to share his experience.
Follow NEDIC, NIED, and Sheena's Place for more support and information.