Trish's Carer Story
I’ve very quickly learned not to look too far into the future. Instead, I focus on the little things that bring me joy.
The COVID lockdowns weren’t easy on anyone, but the impossibly long ones for us in Melbourne were absolutely awful. For my 17-year-old daughter, it was a lot of sitting at home and doing nothing, which turned into a lot of thinking about the fact that she was sitting and doing nothing. Like a lot of us, she’d gained a bit of weight during the lockdowns, but she had also begun to develop some serious body image issues.
I saw the change in her in January 2022. I wish I’d taken it more seriously.
She’d started heavily restricting her food, and had gone from putting a little comfy weight on to becoming far too skinny and perpetually exhausted. While I’d expressed my concerns to her over the months, it wasn’t until July 2022 that I took her to a GP and started actively seeking support.
After a few months of unsuccessful Family Based Therapy (FBT) at home and with a private psychologist, she was admitted to hospital at the end of October for medical instability. She was only home for a couple of weeks before she was back in hospital for another admission. It felt like we were going to get stuck in a loop, but we’re hopeful it’s all up from here. She’s now home again, we’re continuing with the FBT, and for the most part, it’s going well. She’s gaining weight back and is trying so hard to fight against the disease. It really is draining work – for all of us.
The effect on the family
While I’ll never know how hard this has truly been for my daughter, being the one supporting her hasn’t been easy either. I’ve gone through periods of feeling really depressed, teary, and feeling hopeless. Feelings of isolation and loneliness are near-constant – not surprising when none of my friends and family really understand what we’re going through.
I feel for my younger daughter. With the focus on her older sister and her health these days, she spends a lot more time in her room. She isn’t getting as much attention, and she gets angry at her sister sometimes. I feel awful trying to juggle both – my younger daughter is also starting to struggle with body image, but right now, my focus has to be her older sister. I just hope that someday, she’ll understand.
Personal achievements and accomplishments have had to take a back seat too. I’ve been completing a course at uni that I really enjoy, but since my daughter’s diagnosis, I’ve had to cut down on my university study.
Some days, I am beyond ‘over it’. I’m over feeling envious of parents whose children are happy and healthy. I’m over worrying that my daughter won’t recover and if she does, it’ll only be to relapse again. I’m over being afraid she may die of this illness.
My daughter and I tackle each day as it comes, hoping that tomorrow will be better.
I focus on the little moments of joy, like when my daughter and I sit for meals, and she starts acting a little petty about eating her food. She makes this face that says, “I am mad at you, but fine, I’ll do it”. It’s something she did when she was younger.
Passing on my learnings
While I try not to think about the ‘what ifs’ or beat myself up for what might have gone differently, I do wish I’d gotten help sooner. For both my daughter and myself.
I wish I’d pushed harder with her GP about my initial concerns regarding her weight. I wish I had called Eating Disorders Victoria earlier. I wish I had read Eva Musby’s book earlier on. Small things, big things. But I’m here now, and want to share everything I now know with anyone else who might be in the same boat as I am.
Here’s what I wish I’d known or acted on sooner:
- Read as much as you can about your loved one’s illness – EDUCATE YOURSELF.
- Utilise all the support available—there’s free counselling for Victorians through the Eating Disorders Victoria carer coaching program, your treatment team and nationally through EDFA.
- Take time out for yourself; ring friends, family, and ask for help. If someone can do one of the meals to give you a break – do it.
- Try to stay off social media (not that I’m doing well at that).
- And above all else, don’t be too hard on yourself – you’re doing a great job.
Right now, my daughter is attending outpatient appointments at a public hospital with one of the paediatricians there, along with weekly GP and CYMHS appointments. For myself and my own mental health, I’m seeing a private psychologist fortnightly.
Finding others like me
As for EDFA, the support they’ve offered has been indispensable. I’ve been attending the Zoom support group, where we all catch up with coffee and talk about our current situations. The webinars have also been a great help, and remind me that there are people like me going through this right now, and there are others who’ve gotten through it before.
I also have to mention the private Facebook support group – words cannot describe how thankful I am for the continued assistance and support that is offered there.
I appreciate EDFA for all you do, and thank you so much for helping families like mine.