Family Life and Living with an Eating Disorder: One Caregiver's Journey from Awareness to Action

How does someone’s mental illness impact their loved ones, and how can loved ones best support them?

These questions will be discussed on Thursday, January 30, at Family Life and Living with an Eating Disorder: One Caregiver’s Journey from Awareness to Action, featuring invited guest speaker Wendy Preskow, the founder and president of the National Initiative for Eating Disorders (NIED).

Preskow will be joined by Linda Booij, an associate professor in the Department of Psychology and Concordia University Research Chair in Eating Disorders. Booij is also co-director of the Centre for Clinical Research in Health (CCRH).

The event is part of the ongoing Lived Experience Conversation Series, which pairs a core member of the CCRH and a guest with a lived experience of mental illness.

The event is sponsored by Concordia’s Health Initiative.

In advance of her visit, Preskow shared some of her own story.

Why did you accept the invitation to be a guest at the Lived Experiences series?

Lived experience helps to explain and share the reality of what life is really about living with, or looking after someone who is not mentally or physically well and what we have to face on an hour-to-hour, day-to-day basis. It's real, and until someone walks in our shoes or can at least get a better understanding, our needs may not be met. For academia, this means having lived experience input into research studies and around discussion tables. 

I also enjoy participating in public speaking forums and welcome any opportunity to meet or talk about my life as a caregiver.  

Tell us about your own lived experience.

Over two decades of stress, stress and more stress. A hectic time (Preskow’s daughter Amy struggles with an eating disorder). 

What have you learned along the journey?

That no matter how much we think we know — we still don’t know. This mental illness is so complicated with so many twists, turns, setbacks and triggers, never mind all the resulting physical health issues. The journey will never end in my mind.

I also know that no matter how shocking some parts of our lives have been and what we have lived through, I can honestly still count my blessings, as there are far too many families and sufferers who are so much worse off than we are.

What were the biggest challenges? 

The lack of understanding and awareness amongst the general public, healthcare professionals, elected officials, and even our own friends and family.

Too often, advice you are given or told is not helpful, even though people may mean well. The lack of education on eating disorders is a massive gap and a missing link in the healthcare system. This ignorance took us by complete surprise, and resulted in shock and panic.

I had no idea how little respect eating disorder experts were/are given in this landscape, and how their work is unappreciated, underfunded and thought of as inferior by their own professional colleagues. 

Another big challenge was that eating disorders were not included on any mental health agendas and within prominent mental health national organizations. That was appalling to us. We have been to Ottawa 16 times to overcome some of these challenges. 

What will you be discussing at the event, and why is this important?

I will be sharing our story, which is raw, honest and real, then moving on to how and why I started NIED, and concluding with a poem my daughter wrote. 

What do you hope audiences will take away?

Hopefully, a way better understanding of this illness. Maybe the best outcome would be to encourage people to get into the eating disorder field, as we can’t cope now with the increasing numbers and the succession plan is non-existent. 

Way too many sufferers and families need access to help and treatment. Right now, and in the future.

Family Life and Living with an Eating Disorder: One Caregiver's Journey from Awareness to Action takes place on January 30, from 4 – 5 PM at the Loyola Chapel (7141 Sherbrooke St. West).

The event is free and open to the public.