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The Eating Disorder that dropped like a bomb: A mother’s 20-year journey of caregiving

I started the National Initiative for Eating Disorders (NIED) back in 2012. At the time, our 35-year old daughter had been suffering with anorexia and bulimia for two decades – it stills feels impossible to reconcile the amount of time it’s had a grasp on her life.

The life of any caregiver for someone with a mental illness is a series of never-ending harsh realities. This is mine:

Twenty years ago, the word “caregiver” was not in my vocabulary. When you hear “caregivers” most people think of seniors being looked after and cared for by adult children – who may even be seniors themselves. I come from an entirely different caregiver population (though I’m a senior myself!).

My caregiving journey began in 1999. Little did I know that our youngest daughter, almost 16 at the time, was struggling with self-esteem and anxiety issues and that an Eating Disorder was about to become a devastating bomb dropped on her and the rest of our family.

When she first got sick in high school, her friend came to tell me she was throwing away her school lunch. Around the same time she became a vegetarian, started making and requesting ‘funny foods’, and exhibiting strange kitchen behaviours. Her overall attitude also started to change.

“Where do we go from here?” I remember asking myself.

Our first thought was her pediatrician. At the time, we were so naïve and didn’t know we were about to get caught into the whirlwind of an unknown illness. We had no idea where we were heading.

I still remember my husband frantically charging through downtown Toronto to the National Eating Disorder Information Centre (NEDIC) to gather names of therapists, doctors, dieticians, nutritionists – anyone we could call or reach out to for help. There was no Google at that time, and the internet was in its infancy.

At the beginning of our daughter’s illness, I waited anxiously to attend a weekly peer support group for mothers – a life-saving program.

I vividly remember sitting in this group and watching the facilitator ask those in the room to share how long and how sick their daughters were. Some said 3 years, others said 5 years, and even some said 10 years.

“Yeah right, we will be done with this in a year,” I remember thinking. Unfortunately, this was not my reality and I became one of those mothers.

We have tried everything to help her. From tough love to unconditional love, to having her living at home and to refusing to have her live at home. From a public intervention televised nationally, to her living in safe houses, renting basements, incarceration, inpatient and outpatient programs – the list goes on.

Never in our wildest dreams (or nightmares) did we think we would be taken down these dark roads with our daughter who had everything a kid could wish for. We were loving parents doing everything we possibly could within reason for her and her older siblings. We even uprooted our lives and moved houses in the hopes of making our lives ‘better’ and giving her privacy in our basement.

In 2016, I took her to the E.R. to be rehydrated – over 20 times. I would drop her outside and let her call me when she was done. I was getting to the end of my rope.

My only respite in this time was knowing at least she was safe in the hospital, too sick to run out and with people watching over her. I was ‘free’ for a few hours – imagine having to think like this.

To this day, our hearts sink whenever we receive texts or telephone messages from her, and have had to create an alert system so our own stress levels are lessened.

One major lifestyle change we have made, with her agreement, is locks on the fridge and freezer. The only groceries in the kitchen are spices and seasonings. The rest are locked away. My grandkids are accustomed to asking “for the key to have a snack”.  This is still reality of our lives.

Eating Disorders are not a choice.  Some people believe Eating Disorders are just a rich, vain teenage girl’s malady. Nothing could be further from the truth.

Eating Disorders affect all genders, racial, ethnic and religious identities, sexual orientations and socio-economic backgrounds.

Twenty years of a living nightmare cannot be condensed into a small blog post. But it is enough to paint a dark picture of the life my family and I have had to live with, effecting us all both emotionally and financially.

There is good news though. After 19 years, our daughter has finally started her ascent up the mountain of recovery. She is driving again after 12 years of not being allowed to, she’s gained weight and is content. It feels like we have our daughter back.

We are starting to finally feel that all the strength, love and her will to lead a quality life is suppressing the voices of her mental illness.

Although the stress and worries will never leave us alone, we have, over the past years as well, had to remake our lives as a couple and continue living and trying hard every day to enjoy our lives, which we do and I count my blessings every day.

This blog was originally posted on Frayme leads a national and international network that connects mental health, health and social services working with youth and young adults to accelerate the integration and implementation of youth care in Canada and around the world.

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