Beware of the challenges of the Internet for adults with eating disorders

by June Alexander

Forty years ago I told a GP that I feared something was taking over my mind. “You have a flat battery, that’s all,” declared the doctor. “We’ll pop you on medication and you will soon be as good as new.” If only breaking free from an eating disorder was that easy. We know a lot more, but for adults, there are fresh challenges.

Access to health services has improved a lot. An 11-year-old developing an eating disorder today, can be hopeful that their parents or perhaps a teacher or family friend will recognize the symptoms, take them to the family GP, and be referred to an eating disorder specialist who, if a diagnosis is confirmed, will supervise Family Based Treatment.

But for adults with eating disorders, the outlook remains bleak. While support and access to services have improved in some areas, new obstacles to recovery have evolved, making today’s recovery path possibly more difficult than the path I faced 40 years ago.

There are several reasons.

  • Social media
  • Cultural and societal emphasis on body image, dieting and exercise
  • Self-declared “experts” who target vulnerable people

If you are seeking help today, and recovering, you may feel besieged by these “in your face” challenges and be vulnerable to their influence. To stay safe, and secure, you need a trusted mentor and team to help you navigate your way to good health and well-being.

I will share the story of Leah (not her real name), to illustrate why you need a trusted mentor and team who has your health at heart, and who practice evidence-based treatment.

Leah developed eating disorder behaviors in childhood, but somehow managed to get by until her mid to late 30’s, when the eating disorder thoughts became louder and began to affect every part of her daily life.

In primary school, I came home and would eat and eat. My parents would go out and I would eat…I didn’t know it was wrong but yet I would try to hide the evidence, that is, the empty packaging, and eat in secrecy.

I was bigger than other children my age and felt uncomfortable in my own skin. I felt  uncomfortable eating in front of others at school and hated school camps, because people would see me eating meals. Kids would be cruel, and being weighed at school was horrendous.

The dieting started in my 20s, and my weight began to yo-yo. Even in my teenage years, I would try shake diets, and going to the gym. But nothing helped.

Looking on the Internet for answers

I started to think this is not normal. Why is this happening to me? I was unable to control myself around food. I was either in or out of control.

I was confused, ashamed, guilty; I felt disgusted and very isolated and alone.

I started to look on the Internet for some answers.

This was after I had my children. I began to surf the ‘Net.

Key words: bingeing, dieting.

I was always looking at dieting, to lose weight. There were many diets to choose from on the ‘Net. I found people on the ‘Net who were coaching people to lose weight.

I actually lost a lot of weight.

I would go through periods of time when I would not binge, but would always lapse back, It was always in the back of my mind. Maybe I would manage a few months, on a high, losing weight.

But at the same time I became really scared, like, “I can’t eat this or that”, and had all these rules, which were increasing. Don’t eat potatoes, don’t eat bread except for sourdough, eat a few purple grapes but no green grapes.

One so called therapist had a plant-based program with an extended juice cleanse – so I was becoming very restricted in what I could eat. Only vegetables and fruit were allowed (but I was scared of the fruit due to the sugar).

Going out for a meal with others was difficult as I would want the vegan option.

So I would make up excuses and stay at home. This went on for a couple of years.

I felt worse. I felt like I had no control. I could not trust myself with food.

I kept trying a new diet as I did not know what else to do. For a short time on one of the online diets, I did well. I excelled at the juice cleanse – I was advised to continue it if feeling good, so I did. I yearned for some broccoli soup, but that was breaking the rules.

An enema was part of the daily “treatment” routine.

Caught in the vicious binge-starve cycle

Eventually I started to eat and couldn’t stop. I spiraled into depression and despised myself for being weak and failing yet again.

This was my pattern: self-blaming and loathing myself.

The online therapist did not encourage me to see a local mainstream doctor. She actually said she had no faith in doctors.

She would tell me to “re-calibrate and re-start” her eating plan the next day. Vegetables, fruit, nuts, seeds. That was it.

When she started to notice this diet was too restrictive for me she said to introduce some chicken, gluten free pasta, rice – but by now I could not eat the any of these foods because my eating disorder had said it was bad to do so.

This therapist had claimed her diet, besides helping to overcome my eating disorder, would also treat my Irritable Bowel Syndrome (IBS) but, like my ED,  this condition was becoming worse instead of better. I was in pain and feeling bloated.

When I did not improve, the therapist put me in touch with a psychologist online – this led to an introduction to hypnotherapy but again, this made me feel more desperate than ever.

Online therapy was not working and not knowing what else to do, I searched online again, this time booking into a health retreat that marketed itself as a rehabilitation center. The owners claimed their expensive four-week program, which was led by psychologists and counselors, would be helpful for my ED symptoms and IBS. However, their whole food approach allowed no dairy, no processed food, no artificial additives, and no preservatives, and had juice cleansing. The experience set my mind up to go further down the restrictive path. It was an absolute waste of time and money.

Before booking at the retreat, I had directly asked the manager if they were experienced in treating BED and the manager responded that “Yes, they were.” They would treat my IBS as well.

But when I returned home I felt scared, fearing “it” would come back again. I felt I was constantly trying to fight off a feeling that I would binge. I felt really low and was thinking “I cannot be helped.” Friends had looked after my kids while I went to the retreat and I had come home no better, in fact worse, and $15,000 out of my bank account.

Be careful

Earlier this year, by now in her late 30’s, after years of searching, Leah found the right  path to recovery. A family friend in the medical world suggested she arrange a referral to a local psychiatrist with real ED expertise.

While looking online into the background of this psychiatrist, Leah came across my name,  started a fresh thread of research, and found this online blog.

Leah’s message for you when seeking help online

Do your research carefully because a lot of people out there claim they are experts and can help you. In reality, many of them are no more of an expert than me.

They say they have “this program,” and you have to pay up front; they promise success: they “screen” you for suitability for their program; you are told you are a “perfect fit for this program;” you are told “a lot are not suitable, but you are;” “you have the offer of the last spot, we can’t hold it for long;” “we don’t know when the opportunity will come again, and oh, you need to pay up front.”

Feeling desperate for help, you pay.  No amount is too much because they convince you that they have the “fix.”  You join and immediately you see more new people coming online each day.

Access to services

The other main challenge that Leah has encountered, is the limited access to eating disorder services for adults. While irreputable “help” was easy to access online, reliable health was more difficult to find locally.

When I sourced the real help locally, they said: “It may be months before we can see you.”

Curled up in despair in a fetal position on my pantry floor, I said to my mum: “I don’t want to live any more.”

A friend rang the clinic and said it was urgent.

However the response was unchanged: “You have to stay on the waiting list.”

Four months it took, to see the psychiatrist.

He says now, that I also need a psychologist. Now I am waiting three months to see the psychologist.

From despair to hope and understanding

I have had 30 years of struggle.

I want to live now. I feel hopeful. Before I saw myself as a terrible mother, I was the worst, but now I can see that I am a good mother.

The medication (prescribed by the psychiatrist) has helped. A lot. I am not bingeing anywhere near as much. I don’t feel as alone now because I have shared my secret with my mother, my husband, my best friends, my GP and my psychiatrist and all are on the same page.

I always thought that if I stopped bingeing everything would be okay.

But BED is more than this. The deeply embedded rules don’t just magically go away, neither does the fear of food and of being fat. Recovery requires work.  It’s a scary and confronting job; you need real help and support from a professional who really does have the expertise in treating ED’s, not from one of the many keyboard warriors who are full of promises but deliver nothing but disappointment.

I’m fed up at being led down the wrong path by people who took advantage of my illness, my vulnerability and my desire to get better.

Be careful and always listen to your gut.

When in doubt, do more research and save yourself the heartache of having yet another expensive, failed attempt at recovery.

Some helpful and reliable links to explore:

https://www.nedc.com.au

http://feast-ed.org

http://beateatingdisorders.org.uk

https://www.nationaleatingdisorders.org

https://bedaonline.com/understanding-binge-eating-disorder/binge-eating-disorder-treatment-providers/

Thank you to Leah for bravely sharing your story to help others.