What people don’t tell you about treatment

Anyone looking at us 20 years ago would have assumed from the outside that we were a perfectly ‘normal’ family.

My husband Kevin and I, and our beautiful twin daughters, Charlotte and Samantha, were happy and healthy – glued together by the strong foundations of our marriage.

Of course, like any family, we had our ups and downs. But we were always working together to overcome them, and to move forward. We were doing okay. Or, so we thought.

Our picture-perfect world fell apart in 2004 when Samantha was diagnosed with an eating disorder and OCD.

Naively unaware of the conditions, or the precise treatment needed for our lovely daughter, we both believed that if we entrusted Samantha’s health to the ‘system’ she would get better – we had no reason to think otherwise. That, however, turned out to be the steepest learning curve I could ever have imagined.

In the end, the system couldn’t support Samantha and I was left with no choice but to educate, train as a counsellor and care for my daughter myself. I learned a lot along the way.

But what I found most eye-opening was the things people don’t tell you about life after eating disorders.

The day after 

Suffering from an eating disorder could be compared to having a manipulative and unkind bully residing in your head.

It convinces you that they are your best friend and your only friend. Although the person suffering will feel they are in control of this ‘friendship’ – in reality it is the other way round.

This friend will encourage the sufferer to withdraw from their friends and loved ones, isolating them and making it hard for them to trust them and reach out for help. They will be fighting a constant war zone in their head, making it difficult to consistently fight the eating disorder. This alone will have a devastating impact on their everyday life, relationships and their physical health.

For me I think the biggest change I saw for Samantha was the loss of time, she was trapped inside her own head as many are for several years, so when she and others do emerge, time has moved one and yet their lives have stayed the same.

When living and coping with the dreadful effects of a loved one who has an eating disorder, it can and does put an enormous strain on everyday family life and the toll it can take on all concerned can be devastating. As this unwanted intruder arrives and noisily unpacks its bags it drives a wedge through any family no matter how strong they may be, siblings in particular can unintentionally be sidelined, while the focus and attention is on the sufferer.

And there are lots of myths which exist around conditions.

Whilst the conversation around eating disorders and other mental health issues has improved, and people are talking more openly now, I feel there is still a lot more work to be done.

We still need to create a better understanding of mental illness and how it affects everyone differently and their recovery will be unique to them.

One of the most frustrating myths surrounding eating disorders is being told that recovery is not possible.

When do you cross the finish line?

From my own personal and professional experience, I have learnt and believe that recovery from an eating disorder is not only possible but sustainable. However what is sometimes not clear to both the sufferer and their carers is knowing when they have reached that place of ‘recovery’.

Recovery is not the finishing line you get to at the end of a race, but a process to go through and an understanding to arrive at. And that end destination will look different for each and every one of these people.

Eating disorders only affect teenage girls is another myth that is simply not true. While the peak time for the onset of eating disorders is between the ages of 12 and 25, these illnesses can actually occur at any time and among people from all ages, cultural and economic backgrounds and genders.

Fast forward 20 years, and I now find myself in a new career as a counsellor and author. I am on a mission to help, support and educate others with a better understanding of what it is like to suffer from and live with an eating disorder and OCD.

Last week I conducted a poll on Instagram in which over 4000 people took part. I asked them if they felt care for those suffering from eating disorders had improved or got worse over the past 20 years. Just 13 percent said it had improved while 87 percent said it had deteriorated over the last 20 years.

So with the above in mind, having previously made films called A Day With OCD and A Day With Anxiety, I am embarking on a new project. To mark the 20 years since it all began, I am producing A Day With An Eating Disorder. This will be a short film aiming to dispel some of the myths surrounding eating disorders filmed in a satirical way that will help the viewer to understand the complexities of the eating disorder mind as well as give a better understanding of what it is like to live with a mental illness.

I am blessed to have a small but dedicated team all sharing the vision as me including my daughter Samantha who is now a professional writer and has co-written the script with Lillie Bailey and Marvin Ambrosius. We have some wonderful actors including Paul Cooper, Jess Impiazzi, Mikyla Dodd and Yanick Ghanty on board.

Over the coming weeks and months, I am looking forward to sharing lots more details with you about this film.

Everyone taking part is all giving up their time to support us as well as many others lending their time and expertise for the cause.

For this, I am so grateful and I know that my family’s story and journey, with all its highs and lows, will help many other families to gain a clearer understanding of this most devastating and sometimes totally misunderstood mental illness.

More than anything we aim to give hope that having or living with someone with an eating disorder does not have to be a life sentence. And that life after an eating disorder can carry on.

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