By Oona Hanson
Caring for a child with an eating disorder can be the most painful and challenging time in a parent’s life. Months if not years of emotional exhaustion–combined with the strain on finances, relationships, and even your own health–take a serious toll.
In the throes of the illness, however, the magnitude of the situation is often difficult to grasp. Sometimes it’s the little things–the surprising, odd, and even absurd details–that stop you in your tracks. Here are just some of the unexpected things you may encounter along the way:
You spend more money on special “safe” food for your child with an eating disorder than on everyone else in the family combined.
You listen to other parents complaining that their kids are “always hungry.”
You spend far more time on the phone with the health insurance company than you do with your friends.
You use plastic or paper plates in case they get thrown.
You run out of checks before the next batch arrives because of all the appointments with providers who don’t take credit cards.
Your other children stop having friends over.
You hear a medical technician compliment your child’s thin body during an EKG or DEXA scan.
You leave your phone ringer on at all times in case the doctor calls you back.
Your vocabulary includes ten new medical acronyms and five new insurance terms.
You avoid social gatherings because friends are likely to discuss dieting.
You have the suicide helpline number in your cell phone contacts.
You have people question whether your child really has an illness because “they look great.”
You undoubtedly have your own mental list of surreal details. The painful markers of this experience may bring white hot rage or tears of despair. Or perhaps you’re leaning into gallows humor and laughing at the absolute absurdity of some of these situations.
Whatever you’re feeling, know that your reaction is normal. And that no matter how seemingly strange or unique your particular experience is, there are other families who “get it.” You’re not alone.
Yes it is a strange world, and I found it easy too, out of desperation, to get caught up in activities that were probably supporting the eating disorder. Some “weird” things for us were:
1. Visiting 4 supermarkets in one day to find the right bananas that your child will eat. (not recommended).
2. Making the mental shift from being appalled that someone would call the police due to the screaming of your child to longing for the police to call so that the screaming and distress would stop.
3. Coming to the realisation that it is impossible to work and refeed your child.
4. Realising that actually you don’t have to attend that very special family event and that your child comes first.
5. Taking your child out of school, and realising that education is way down the list of priorities.
6. Reaching that calm state of mind where you realise that it doesn’t matter if your child throws away the whole family’s dinner as you will just make something else.
7. Being desperate to talk to other parents you have met online as they frankly are the only people in the world who understand what you and your family are going through.
8. Finding out that you have to be an advocate for your child to make sure they get the treatment they need.
9. Appreciating the transformational power of hope in full recovery.
I am very grateful that we have not been alone on this journey, and very grateful for the kindness and wisdom of FEAST parents and moderators.
Yes, Sandie! And your list is *very* familiar.
Thank you for sharing. And you are so right about how the ED can start to control the whole family in ways you don’t realize at first.
So true – all these observations x
Sometimes the absurdity of the situation gave me a “gallows humour “ approach. Like the time we went to one of my favourite restaurants on holiday and my girl would only order a small side salad. Oh well – I thought – at least it will reduce the bill by 25%!
You learn to say, “no, you don’t need to weigh her today,” when visiting the allergy doctor and enduring the poor attitude that comes from the medical assistant who has no idea how far the number on the scale will set your child back.
And Sandie – how right you are with #7 – thank God for the momma bears on the internet, never would have made it without them.
@Sandie: #2, 100%. I prayed that the police might come… Ever grateful for this community.
It feels as if there really is no help for this.
There is help. Our problem is our 38 yr old son refuses help, so we feel the way you do. I hope you can find the help for a full recovery for your child.
I’m grateful the police who arrived were well-trained and didn’t arrest me.
You learn who your real friends are — the ones who mention that your daughter has lost weight and rather than praising her ask you if everything is ok. And then when you break down in tears they offer a hug, a tissue and ask what they can do.
Any families from Hamilton so we can support each other?
Do you mean Hamilton NZ?
I always have a bag packed and ready for a hospital trip. This is a daunting experience that very few understand. The lonliness is huge. The worry about my child is all consuming.