4 year journey

It’s been a long four year journey for her, for me, for the rest of our family. I want to talk about this journey from my perspective as a mother.

There comes a point when you notice that things are not right.  My daughter was losing weight and struggling to eat. This illness is a master in disguise and deceit and she did everything to hide it from us and from everyone around her. She behaved out of character. Lying to avoid the next meal. Exercising secretively to burn off calories. I was desperate for her to eat. I would beg, plead, bribe and scream.

I think I should tell you that this illness seeks to manipulate a parent’s love and find your weakness. What wouldn’t you do for a smile or a hug? I knew inpatient care was required but she would tell me that if I really loved her I should take her home.Nothing else seems to matter to her  – not me, not anyone, not anything. It is unimaginable and cruel that despite what this illness is doing to her she embraces it and holds on with both hands. It can be so difficult to remember that my daughter is still there, hidden in the depth of the illness.  I believe that despite what she says, some part of her is hoping that we will keep her safe and alive.

From the point of view of experience now, and the reassurance of the treating team here at Ellern Mede, I know that treating a person with an eating disorder is a job for a whole team not just me, you or one expert. I learned along the way that if I work against the efforts of the treating team I hinder not help. But when we work together its powerful. After all as a parent we have something the experts don’t have – an established relationship and bond.

A key lesson for me was to listen and trust the experts at Ellern Mede. This is a team that have dealt with this illness many times. They really know what to do. I’ve learned that giving into the illness is a big mistake. The more you give in the more it will demand. Dr Hind Al Khairulla taught me the strength to firmly push back those demands. Working alongside the team, we continually review and adapt our approach. We have to trust one other and speak with a single united voice.

Every time I have my doubts I simply reminded myself that fundamentally, all of us are trying to safe my daughter’s life. That has always helped to keep things in context and enabled me to take tough decisions to support the agreed treatment plan.

My daughter sometimes has no capacity to hold hope as her thoughts are simply too overwhelming.  That’s when the doctors and I hold her hope for her. And sometimes I am too overwhelmed and that’s when they support me. At times I could barely function. I’d thought it had surely got as bad as it could and it got worse. I had to accept that this is not a journey with a defined end date. No two people are the same and their experience of the illness differs. Some recover faster than others.

Nowadays I describe my journey as a rollercoaster ride in the dark but thanks to an expert care team I’m strapped in, I won’t give up hope, and none of us are about to give up. One day my daughter will find her own strength to fight. Our journey has not yet come to an end. At least my daughter is getting the best help possible. She is alive, with me today, and there is always hope. So I keep going knowing that I am supported by my family, friends and the EMR team.  I believe that we will succeed and that breakthrough is within reach.