Eating Disorder Awareness Week 2015: A message from the heart of a therapist and survivor.
Eating Disorder Awareness Week is February 1st–7th. During this time, I try very hard to be appreciative of any awareness that I see. I cannot help but be disappointed most of the time, however, because the awareness is often missing the beat in my opinion. My intent in writing this article is to bring awareness to what is important for all to know and understand about Eating Disorders.
Eating Disorders are one of the most complex illnesses to understand and because of that they often get overlooked. Doctors frequently do not want to treat them, and sufferers are shuffled from one place to the next on an assembly line of hopelessness. Right now in Canada we have very few treatment options available. The treatment that is available for both adults and children is limited and follows very specific protocols that do not always work. This is not the fault of the professionals who tirelessly work for the cause, but due to limited resources, funding, and increasing demand for OHIP-covered and intensive treatment. There is not one standard presentation of the illness. A one-size-fits-all approach to treatment leads to high relapse rates and a sense of hopelessness for the sufferers.
The media depicts Eating Disorders in a way that is incredibly simplistic. The idea that Eating Disorders, a Psychiatric condition, are caused by social media, celebrities, and North America’s focus on thinness is insulting to anyone who has had to battle the demons of an Eating Disorder. Many times I have wished there was a different name for Eating Disorders so that people would not assume that it is just about food, eating more or less, and being thin. Much like Obsessive Compulsive Disorder goes far being being neat and tidy and Depression is much more than being sad, Eating Disorders are not about food and vanity. It is amazing how little food talk I do as a therapist who specializes in Eating Disorders. This is an illness based on something much deeper, much more complicated. If it were just about food – wouldn’t the recovery rate be a lot higher? Would it not be a lot more straight forward and easy to understand and treat? Often individuals diagnosed with Eating Disorders are also battling another psychiatric condition. Sufferers have high rates of Anxiety or Post Traumatic Stress, Obsessive Compulsive Disorder, Depression, and Borderline Personality Disorder. This leads to misdiagnosis, partial recovery, and more suffering for the patient.
I am so incredibly tired of people questioning whether this is something that should be classified as a mental illness. I have heard people say Eating Disorders are about everything from vanity to a diet gone wrong, a cry for attention, a desire to have a thigh gap – I could go on, but I won’t. One of the most well known Eating Disorder doctors in Toronto, Dr. Blake Woodside, has said that if this illness impacted middle-aged men the outcome would be much different. There would be more attention, more money put towards the cause, this illness would be taken more seriously. We all know the stats. Eating Disorders have the highest mortality rate of any other mental illness, long waiting lists, are very hard to treat. The list goes on and on and nothing changes. My passion here has nothing to do with trying to get validation from individuals who do not suffer or trying to get others to finally recognize the battle and get the media to understand. I have long since stopped making that my priority. My issue is how all of this impacts the sufferers. The brave men and women I work with are consistently questioning whether there is actually anything wrong with them. They live with the mindset that it is perfectly normal to feel like they are not worthy of happiness. They feel that the only way they can control their thoughts and emotions is to hurt themselves through things like overworking, under-eating, overeating, cutting themselves, drinking too much, being the a top executive, a super Mom, addicted to drugs – anything to completely distract them from the reality and madness of their brain. They believe that they deserve to feel this pain; that they will never be free of this, so why bother trying. The media presentation of Eating Disorders, again in my opinion, just enables this belief for the sufferers. One of the most dangerous diagnostic elements of this illness is the inability to see that there is a problem. There is a complete disconnect between the reality and severity of their everyday lives and what we see. The messages and support that surround them only enables the isolation in their minds.
This is the part that many people do not understand. There is still a strong stance that it is completely in the sufferer's control and that they can just change. A recent article I read in a very popular newspaper said that "individuals just need to find a new passion in their life and it will all be better, that Eating Disorders should not be classified with other mental illnesses like Bi-Polar because it is clearly a women’s illness and therefore a social construction." (This very article may have sparked my passion to write today.) Try and explain that to someone who has been sick for twenty years, unable to work, and has tried everything; what happens if they try and try and continue to suffer? Should they just give up? We have to understand and bring awareness to the fact that each and every person that is diagnosed needs to have specialized care and not be treated like a number. If you are diagnosed with Cancer, Dementia, or Autism, you will have different combinations of therapies and medications offered and they may very well be different than those received by the person beside you with the same diagnosis. We have to stop putting Eating Disorders into a box, labelling it, and selling a one-size-fits-all approach to wellness. My Eating Disorder experience is different from each and every person that steps foot in my office and anyone else with a diagnosis. We all have a different path, a different treatment, a different mode of recovery. Just because something worked for me does not mean it will work for you, your daughter, your son, or your patient. Given this is an illness of the brain and we all think differently, does it not make sense that there would be some variation in treatment? Eating Disorders are biological and genetic – we cannot expect that if we treat everyone the same, the results will all be successful.
To all of you who are suffering: I want you to know that as much as you feel unheard, crazy, numb, hopeless, or stagnant that you are not alone. This will be the hardest battle you will ever face in your life. I have birthed a child, worked through degrees in University, been with the same man for 16 years, and watched those I love pass on, and those things all seem easy compared to one day at my worst place in this illness. You have to recognize each and every day that you are fighting; that there will be something at the end of the tunnel. You have to recognize that the voices in your head are coming from a very sick place. They are very convincing and feel like a part of you, but when you are well this all changes. I want you to know that trust is one of the biggest things you have to fight against. You have to trust that it has to be better. You have to trust that although this is something that you may think will eventually disappear, it will only get worse with time. It is like a muscle that gets stronger and stronger the more you listen to it. I need you to know that only you can make the change. That you are in the driver's seat, but that does not mean you do not need a teacher to guide you and insurance in case things go wrong. You need support, you deserve support, and you likely need support for longer then you think. You need to trust me that just because you are symptom-free it does not mean you are close to wellness. It means you are incredible and have gotten through so much that the next chapter is yours to take – but it is still a battle. I want you to know that the "system" is not perfect. You are going to have professionals that say things that hurt you, and you may not always have a place to go when you are ready to get help. Your Eating Disorder may use this against you and say you are not sick. Trust me when I tell you our system is broken (hence the last several paragraphs). There is not enough support, there are not enough specialists, and people die on waiting lists for treatment. Reach out and find something that you can start to connect to. Try and be an advocate for yourself. If you meet with a therapist and it doesn’t work, try another one. If you have been to treatment and it didn’t work, so what? Most of us do – try again.
I will never be able to get the memories of what it is like to be in the Anorexia out of my head. I don’t think I will be able to forget how paralyzed with anxiety I was for a long time in my life, or how dreadfully depressed I was going into my lowest point. These are, however, my MEMORIES – not my present. I don’t remember all the aspects of my battle; cognitively, I was not aware enough to be able to do that. But something happens when you have been sick in this way – it stays with you. This does not mean it never goes away. That is some people’s experience, but it is not mine. I explain it to my clients as I am a better person because of it. I know that sounds so cliché, but honestly I have no idea who I would be if I didn’t have to go through what I did. That is what I mean when I say it stays with you. You cannot forget how it feels to be completely isolated, feeling so different from everyone around you, not wanting to spend time with family or friends, being in such a haze that you have absolutely no perception that you are not only killing yourself but those around you. That was me. I had to learn that no one around me will be able to validate my battle. That my friends and family will never understand what exactly was going on with me through my years of illness and do not understand to this day what it is like for me. I had to learn that the only person that was going to validate that was myself. That no one else needs to understand how hard it was, how different my life was than theirs, and that it doesn’t matter. I am not going to lie, it is lonely feeling something may always disconnect me from others. It was not a straight line and never is; I am now at a place where I know myself and know my limits. I know that I think differently than most women around me. I don’t think about food the same way other people do – it is never a thought in my mind to try and go vegan, or the newest health cleanse or next marathon to train for. That is not an option for me. I have learned that a lot of what is happening today with young men and women enrages me. That I am dumbfounded by how many people are still encouraging such unhealthy behaviours in their children. People in my own social circles engage in behaviours that remind me of myself when I was sick and that will never change. I have learned that having your own children is even scarier because you want to keep them in a box.
The most amazing thing that I have learned not only from my own experience but from my work is that you can beat this. I absolutely love what I do for a living because I get to celebrate all the achievements of my clients and see the most brave people everyday, choosing to fight. Seeing a client "graduate" into wellness, being invited to graduations and weddings after not knowing whether these people would survive is something that I cannot even explain. Watching someone battle through the trenches is the reason I do what I do. I selfishly feel a lot better getting this off of my chest, and I can only hope that this article brings your attention to something you didn’t see before. That it has raised YOUR AWARENESS in a way that is meaningful.
Carly Crawford, Psychotherapist