Content warning: the following piece discusses personal experiences of an eating disorder.
For the month of May, The Butterfly Foundation is shining the spotlight on the 2 million carers who support loved ones with eating disorders. We hear you, we see you, and we couldn’t do it without you.
In this blog, Mia, who has experienced an eating disorder, sits down with her Mum Louise to discuss what it means to be a carer for those with eating disorders.
When I first went into treatment for my eating disorder six years ago, I’d lost just about everything. My job, my friends, my purpose and most frightening of all to think about now – my will to live. One thing my eating disorder couldn’t take away from me was the love of my Mum, Louise. She was the first person I called when I finally hit rock bottom. I finally plucked up the courage to tell her about the eating disorder I kept silent for so long. I was very sick. Without treatment, I would surely die. Mum did everything in her power to make sure that didn’t happen. Doctor and psychologist sessions were paid for without hesitation. Love and encouragement were offered without restraint. And as I made my strides to a full recovery, becoming an advocate and eating disorder recovery coach along the way, she has been my biggest cheerleader.
This year, in support of The Butterfly Foundation’s MAYDAYS campaign, I sat down to interview my amazing Mum and highlight her incredible efforts to save my life. Hopefully, by sharing our experience, we can help other family members, parents, partners and friends to navigate a very difficult path. Most importantly, I hope we can bring awareness to what carers are facing and find a way to more effectively support their selfless plight to save their loved ones.
Mia: What do you remember about my eating disorder? You can talk about whatever you want, there’s nothing you can’t mention.
Louise: I think the first memory was that I felt as if you’d been possessed by another being. In the sense that I wasn’t dealing with the same person I’d known on a day to day basis. You could change momentarily – minute by minute, hour by hour, day by day. You could be very defensive, very explosive – never physically. I didn’t know how to cope with that.
Mia: We also didn’t know it was an eating disorder back then.
Louise: I didn’t know at the time that you were suffering from an eating disorder. I saw this very fit and what appeared to be a very healthy person, somebody who was looking after herself. The fact you were an adult and not living at home meant that I didn’t see you on a daily basis. But when I did see you, you appeared to be healthy.
Mia: With everything we’ve learned over the last six years, what are some of the warning signs you can identify?
Louise: Certain foods that would be totally avoided. Or planned meals out where we just didn’t end up going. Also, how you interacted with other people, which I can now see was the anxiety you were suffering from.
Mia: What was the hardest part of caring for someone with an eating disorder?
Louise: Not knowing what I was going to get or who was going to walk in the door. I now see what was the eating disorder and what was you. That’s great in hindsight, but at the time I had no idea what I was dealing with.
Mia: I think it’s so important to recognise that distinction in talking about this. That there is still a healthy person in there, that they don’t disappear completely.
Louise: Absolutely not, nor does the loving and caring person. But then the personality is overtaken by the eating disorder self.
Mia: People with eating disorders can feel like such a burden for that reason. They can be so volatile – and I can even say that I was verbally abusive at times. But it’s important to know that you can heal and deal with the eating disorder part, but you still remain. Your eating disorder is not who you are as a person.
Louise: Absolutely, the core is still there.
Mia: Were you aware of any support or resources available to you as a carer?
Louise: No. I think if you’d been younger, I might have been more aware.
Mia: In terms of the pressure you felt as a carer, who was financially supporting my treatment initially without your own support, did it feel scary or isolating?
Louise: It did. None of my friends had been through a similar thing, particularly with a child who was an adult. In this day and age I’d certainly reach out more. Had I known that there were support groups available through Butterfly, I would have been on the phone very quickly.But financially, it wasn’t going to change my life to be able to pay for those sessions for you. For those people who have to make sacrifices to afford treatment, who have to ask themselves what they can go without in order to save their child, it is just shocking.
Mia: And there are people who would get to the end of the number of sessions which are currently available to them and that would be the end of treatment for them.
Louise: This thing isn’t going to get licked in a few sessions.
Mia: What advice would you give to other carers?
Louise: A lot. First of all, take a deep breath and tighten your seatbelt. You’re in for a really bumpy ride. The ride does end – no one can put a time limit on when, because it’s an individual thing.Secondly, no matter what is being thrown your way, what you have to do is be consistent with your loved one. Don’t react to the eating disorder. It’s similar to your loved one having an abusive partner. Get them out of the situation as quickly and calmly as you can.Thirdly, you need to take care of you. If I’d been able to tap into a support group I would have. Maybe you have close friends who can give you some good advice or who can just sit and listen and say ‘I hear what you’re going through.’And finally, being more honest about these things. We tend to think ‘What have I done wrong?’ Particularly as a parent, you will ask yourself ‘What did I do? Or what could I have done better?’ You can’t blame yourself for what is happening.
Mia: Where there is shame there will just be more shame.
Louise: And where there’s shame there’s silence.
Mia: How is life different now that I’m fully recovered?
Louise: Wonderful. It always has been. It always has been a joy to have you in my life and I’m very proud of what you’re doing.Just to be able to go out and have a meal or a holiday together with lots of laughter is a joy. Life is just good.
Mia: Thank you so much Mum.
Louise: That’s a pleasure.
Mia: I love you.
Louise: I love you too.
The Butterfly Foundation are raising funds for carers support, so please visit their website to donate to this incredible cause.
If you are a carer, or you or anyone you know is experiencing an eating disorder or body image concerns, we encourage you to reach out for support. You can call the Butterfly Foundation Toll Free National Helpline on 1800 33 4673 or visit their website www.thebutterflyfoundation.org.au for more information.