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The Eating Disorder that Dropped like a Bomb: A Mother’s 20-Year Journey of Caregiving

(originally posted via National Initiative for Eating Disorders (NIED))

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

The life of a caregiver supporting someone living with a mental illness is a series of never-ending harsh realities. Here is mine: 

Twenty years ago, the word “caregiver” was not in my vocabulary. When you hear “caregiver,” most people think of seniors being looked after and cared for by their 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, [who was] almost 16 at the time, was struggling with self-esteem and anxiety issues. 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 that she was throwing away her school lunch. Around the same time, she became a vegetarian, started making and requesting ‘funny foods,’ and began 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 to speak with her pediatrician. At the time, we were so naïve and didn’t know we were about to get caught in 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 sick their daughters were and for how long. Some said three years, others said five years, and some even said ten 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 tried everything to help her, from tough love to unconditional love, from having her living at home to refusing her living at home. From a publically televised intervention, to her residence in safe houses, renting basements, incarceration, inpatient and outpatient programs – the list goes on. Being an Eating Disorder caregiver is no easy feat.

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 want. 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.

During that time, my only respite was that I knew she was safe in the hospital. She was too sick to run out 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 significant lifestyle change we have made, with her agreement, is placing 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 get a snack.” These adaptations are still realities in our lives.

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

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

No one can condense twenty years of a living nightmare into a short blog post. But it is enough to paint a dark picture of the life my family and I have had to live with, affecting 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 finally starting to feel that all of her strength, love, and will to lead a quality life suppresses the voices stemming from her mental illness.

Although the stress and worries of being a caregiver will never leave us alone, we have remade our lives as a couple and continue living and are committed to enjoying our lives (which we do!) I count my blessings every day.

About the Guest Blogger: Wendy Preskow is the President and Founder of the National Initiative for Eating Disorders (NIED).  NIED is a not-for-profit coalition of health care professionals, counsellors and parents with children suffering from Eating Disorders. NIED’s team aims to help bring about positive change in both the availability and quality of treatment of Eating Disorders in Canada.