Why it is Hard to Be an Eating Disorder Recovery Advocate

I have been doing various speaking engagements since early on in my career as a psychotherapist and also very early on in my recovery from my eating disorder. My sentiments are generally the same when I leave any event- I didn’t quite get my message across, and I didn’t have enough time to answer that question properly. I used to speak about “my story” like a timeline from the onset of the illness through the treatment world and trek through recovery. I NEVER felt that it sufficed what my experience was. Years have gone by and I have changed my style of presenting drastically. I used to think that if people could hear how horrible my experience was, they would understand more, and ultimately act more. This is false. To quote Atticus Finch from To Kill a Mockingbird, “You never really understand a person until you consider things from his point of view…until you climb into his skin and walk around it”. It is impossible to articulate just how challenging the days with my eating disorder were, and to remember all the various roadblocks to overcome. It is equally as challenging when preparing for a speaking event to know what type of information would be the most helpful, and what people need to hear. I don’t want people to feel sorry for me because of my experience; I want them to learn, and act, and change.

I really enjoyed sitting on the panel for the NEDIC, NIED and Sheena’s Place panel on February 2nd during Eating Disorder Awareness Week. We covered a wide range of topics, and got a wonderful response from our viewers. Still, I was left feeling like some strings were left untied. I am thankful to NEDIC for giving me the opportunity to answer any leftover questions and to have one more shot at getting my message out there.

People do not understand. Mental Health is misunderstood. It is somewhat trendy (for lack of a better word) right now to “talk” about mental health. We see celebrity endorsements and we support Bell Let’s Talk, but there is still a huge stigma and a resistance to try and really understand. When explaining my job to people, I inevitably always get the same comments: “Oh are you actually busy doing that?”, “So I can ask you some questions about my nutrition then? You must be an expert.”, “Good for you, there are so many young girls looking at fashion magazines.” I work tirelessly to educate people on the biology, the genetics, the severity of mental illness, but like so many other conditions, it is tough to really understand unless it has happened to you.

Being open about my own history with mental illness comes with it’s own challenges. For the most part, it is incredibly beneficial to my work and to my presence in the advocacy world. The part that is the most challenging is when the topic of recovery comes up. Every person’s path to wellness is completely different. What worked for me, might not work for you. When I am asked, how i got to where I am, It is a really tough question to answer. I do not want anyone to have to go through what I did in order to get to where I am. I did not have the best care in my early days of treatment for my mental illness and I believe that it had a huge impact on how my recovery played out. This is part of the reason why I am so passionate about early intervention, and getting timely and specialized care. It just was not an option for me. To me, I don’t think my story is very motivating. It is a very sad and depressing time of my life that really I don’t like to think about. This makes it tough. What I do like to talk about is what recovery looks like for me. What being a parent, wife, sister, daughter, friend and therapist is like without living in the trenches of anorexia. 

I suppose that I am explaining this to justify why I did not go into much detail about my story in our panel discussion - I felt it was more important for us to focus on hope and healing and moving forward. That said, I am going to attempt to answer some of the questions that we did not have time to address.

1. “Is there ever a day when you don’t think about your ED? Does recovery mean I don’t think about it in the future? Does it ever go away completely?”

I do think about my eating disorder quite frequently, but I think more about my experience. It is not the type of thinking that happens when you are in the eating disorder, it is more of a reminiscence. I suffered from Post-Traumatic Stress from some of my early treatments and that can haunt me from time to time, but my eating disorder brain is not active. It is not ruling my life and it is not a question to go backwards. From my experience, I have seen many individuals get to a place in their recovery where they do not remember what it is like to be in the eating disorder. What we now know is that we can change the chemistry of our brain - we can change the way our thoughts are processed and we can get to a place where it is easier to not engage in behaviours. This is amazing news for recovery and hopeful news for anyone who is suffering.

2. “Do you ever find that working with people with eating disorders is triggering for you?”

No. I am making an assumption when you ask this question, that you mean triggering in the sense that it triggers eating disorder thoughts, or triggers me to engage in my illness in some way. If that is the case, the answer is no. I took great care when making the transition into private practice. I spent time working with my supervisor and former therapist to really ensure that this was what I was meant to do. If it was a question of me getting triggered, it would be very dangerous for me, and equally as important - dangerous for my clients.

If you mean triggering in the sense that it is stressful and challenging, then yes. My work can be very difficult. I have to work very hard, as any other professional does, to ensure that I am practicing good self-care and not completely ignoring myself in the process of my work. This means trying to establish good boundaries and not working too many hours.

3. “For someone who is ready to seek therapeutic help for an eating disorder, what would you recommend the first step to take?”

Open all of the doors. My advice always is to open all doors first. Get your doctor to make referrals to all of the specialized eating disorder programs in your area. You can always shut the doors if you do not need them (i.e. not going into the program, or working with the specialist). The process of getting help in our country is very hard, so you need to get your name on some sort of list first. Next, I would recommend speaking to someone who is educated, and experienced in treating eating disorders. This could be a social worker, a psychotherapist, a doctor, or someone who you know has experience. This way, they can tell you what the process will look like, and help you get ready to engage in the treatment you need to get well. This is not easy to find - so using the NEDIC treatment database is a great resource.

4. “What do you think about the use of recreational drugs (i.e. marijuana) in treating eating disorders like anorexia?”

I wish there was a miracle drug to treat anorexia. I don’t think that recreational drugs are smart to be using in recovery. I think that they can often increase anxiety in the end which can make the process more difficult.

5. “For those of you with multiple diagnoses, how have you addressed those other mental illnesses in the context of recovering from your eating disorder? Did you work on everything at once, or one thing at a time?”

I don’t like to separate diagnoses for the most part. Eating disorders (in my case, anorexia) are anxiety-based illnesses, so the treatment needs to address all factors. I personally believe that, depending on where you are at within your eating disorder symptoms, you may need to get your behaviours into remission first. This is only because it can be really challenging to increase your mood and to have any relief in terms of your anxiety if you don’t.

These are the short answers to much more complex questions. I am more than happy to try and go into further detail through email if anyone has anymore comments.

Remember, you are not alone.

Carly is a Registered Psychotherapist dedicated to providing excellent client- centered care. She has specialized knowledge and training in offering care and support to clients that have been diagnosed with an Eating Disorder in addition to a proven ability to care for a diverse client population in one- on -one care, couples or group settings. She is an ambitious advocate for awareness of causes related to mental health policy, education and research, a recognized speaker and workshop presenter and a survivor of Mental Illness.