Caring in the Shadows: Giving Voice to Eating Disorder Caregivers
World Eating Disorders Action Day
June 2, 2025
I would like to bring your attention to the
unknown, unrecognized, invisible population of
eating disorder caregivers.
WHY – are we not important enough? Other
illnesses always take precedence. Through my
own lived experience and now representing
thousands of other Canadian caregivers – it is
clear that we are actually ‘non-existent’ …yet
millions of us world-wide are in this daily battle.
When did this little word ‘caregiver’ that describes
such a massive responsibility come into being.
Google states:
It began in 1970 but traces its roots back to 1860
and the word “Caretaker”
A caregiver focuses on providing care and
support to those in need, whether as a family
member or as a certified nurse aide working
with a medical team in a skilled nursing facility.
Caretakers focus on maintenance, upkeep, and
daily tasks.
This is a mild and totally understated description of
what we know. We know how long, hard, arduous,
stressful and exhausting our caregiving roles can be.
And very often, sadly, there is no supportive
medical team.
We are ignored, spoken down to and blocked from
medical conversations and, of course any records.
We are not asked or given a chance to add our
voice, share or tell the truth of what is happening at
home and what we see, hear and know as we’re
living it 24/7.
We are often providing emotional, physical and
financial help to the sick one. We know their “logic”
disappears as their brains are starved, yet they need
to navigate the health system.
We are the ones desperate, overwhelmed, often
burdened to keep our loved one alive and pray their
eating disorder voices will not kill them.
Every single day is a struggle for millions of
caregivers and the individual who has an eating
disorder.
We are often told by the medical community to
take them home, you know how to ‘feed” your
child you have done this since birth, just do it.
This feels nothing short of parental /caregiver
punishment and makes us feel even less
capable of getting them well and restoring their
lives.
Twenty years ago, the word “caregiver” was not
in my vocabulary, nor was it the buzz word it is
today. When you hear “caregivers” most people
think of seniors being cared for by adult children,
who may even be seniors themselves.
My caregiving journey began in 1999. Little did I
know that our youngest daughter, almost 15 at
the time, was struggling with self-esteem and
anxiety issues and that Anorexia and Bulimia
were rapidly taking over her body and mind with
a devastating impact on the rest of our family.
I think this word caregiver only truly came to me
when I started the National Initiative for Eating
Disorders-NIED. There was a reference to
“Caregiver” on our website.
Through the experience we have lived we have
come to consider some suggestions for caregivers
to take action:
- Reach out to organizations that work with
Caregivers and to those that work with Eating
Disorders so you can find pockets of support in both
areas. - Start an informal support group in your
community so that you are not alone; contact your
local parliamentarian and let them know about your
group. - Write a note to the therapist or doctor with your
observations or leave a phone message. Be clear
that you do not expect a response, but that the
note is purely for their information; we know
confidentiality can be a huge challenge, but your
input is important for the care of your loved one.
So that’s me – that’s us as parents. We are still living
the experience, doing our best daily to support,
encourage, and help our daughter to live her life her
way.
Wendy Preskow
May 11, 2025
Ontario, Canada
Wendy Preskow
National Initiative for Eating Disorders
www.nied.ca
416-859-7571
Initial Point Of Contact – a comforting voice of
support
www.nied.ca/initial-point-of-contact-program