Sallie’s Story – ARFID

ARFID and anxiety

My daughter Isabella has suffered from ARFID since she was 9. She had extreme anxiety around food, and an irrational thought that she was going to choke or vomit. This anxiety meant she wasn’t able to eat adequate amounts of food.

My husband and I have been caring for Isabella now for 6  years.  It has turned our lives upside down, and tested our family…taken it to the brink.  It destroyed what had previously been a happy marriage, and distanced us from our family and friends.   

mother and daughter recovered eating disorder

The diagnosis  put a huge financial strain on us. I couldn’t work as I became the primary carer. We were isolated, and it changed our personalities.

We may never understand what caused Isabella’s ARFID – we wondered if her anxiety about vomiting or choking could have been been from a trauma she experienced choking in public when she was 3…but the reality is, we will never truly know for sure.

I wish I had known what ARFID was…and how it is treated.   It is a completely different eating disorder from all the other presentations and so we contributed to worsening the condition in the first two years because it was classified as the same as all the other eating disorders in terms of treatment strategy.

It’s been a long journey. These days I am working hard on sharing more with people…and allowing others to help.  I’ve sought help throughout to try to understand and cope with what we were experiencing.  Having the support of an organisation like EDFA has been amazing… lived experience really does provide the care and support needed for families.

This is a long journey and you’ll experience highs and such lows you didn’t know were possible. 

This strange mental illness takes away so much from you as an individual and as a family. I spent many days wondering how our wonderful life could have turned so hideous and why. Consumed with so much dark focus on loss, so much anger and bitterness, envy of other “perfect” families, self doubt, suspicion, blame and guilt. 

My advice to other parents would be to prepare for these highs and lows, have patience, and be optimimistic when it’s almost impossible. Keep hope in your heart, take a walk away from stressors even if its only 10 minutes and breathe. When you get through this and you will, you will never sweat the small stuff ever again!

On the recovery journey there is gain, there is freedom, openness, empathy, confidence, trust, connection and love. It has taught us much about ourselves and made our family strong.

Watching my daughter sleep peacefully at night knowing she has beaten this is the best feeling ever. It really does bring a smile to my face.

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