By Sarah, F.E.A.S.T. Parent Support Volunteer
How long? This question went through my brain every single day during recovery. How long do we have to endure the hate? How long do we have to monitor? How long before she can plate her own food? How long before she can eat freely?
It seemed reasonable. I wanted an answer. After all, most illnesses have a timeline, don’t they? Doctors prescribe antibiotics for an infection or ice and rest for a sprained ankle. Surely someone had an idea of how long this would take.
My daughter is in strong recovery now. So, how long did her recovery take?
The truth is I still can’t answer the question. When we realised she had anorexia our world changed. Our lives were consumed with shopping and feeding and monitoring and therapist appointments. The adjustment was brutal and hard.
With time, small things changed. A moment where a meal went well. A day where a new snack was added without too much stress. A week of good weight gain. A point where we no longer had to increase food. Our journey was changing. All the time. There was still a lot of fear and anxiety. There was still a mountain to climb but we started to see little successes. Little changes. Little glimpses of the girl we knew.
This illness is a wily beast. It won’t be committed to a neat diagnosis. It won’t follow a steady path of progress. So I put it to you this way: If there is no answer to the question ‘how long will recovery take’ maybe we need to ask a different question. ‘How do I endure the time that it will take?’ I think this is a better place to focus.
I think firstly there is a stage of grief. A stage of sadness that the life we wanted for our child is not a reality and it’s okay. It’s okay to grieve that loss but it’s not a place we can dwell in. The first question I would ask is ‘do you really want to know?’ It’s likely this illness will take longer to beat than you could imagine. During this journey, we will endure things we never thought possible, and perhaps for those at the beginning to hear how long recovery will take could be too much to take in.
If we focus on the ‘how’ rather than the ‘how long’ we can get through anything. So we take one day at a time. One meal at a time. We arm ourselves with the ability to tolerate distress. This in itself is a superpower against an eating disorder. We count the progress, not the result. We celebrate the banal. We look for glimpses of our child even when we might only see them for a brief moment. I still remember the first time I heard my daughter whistle again. It was something she did often but not since her eating disorder. We learn to appreciate the smallest things. A meal that went well. A movie together. Sharing a story of our day. Anxiety can often overwhelm us but it also makes us look towards the worst-case scenario. So try to focus on the next steps and leave the future where it is. We try not to make a catastrophe out of each day but view it as lessons learned or just simply as a bad day.
Recovery will not be linear, but as we cycle through the highs and lows, we cycle towards recovery. We read stories of hope and success but keep in mind that their journey is theirs and ours is our own. We build a support team around us. This may consist not only of doctors and therapists but of friends and support groups and forums. Our new life of refeeding our child means we lose so much; our freedom, our social life, our sanity, but this has to be better than watching them starve. This at least leads somewhere. We learn to live in the moments of our new constrained life.
Self-care looks very different when you are caring for a loved one in recovery so we steal moments wherever we can. It took me a long time to learn that recovery would not happen on my terms, that I couldn’t make it fit in a perfect little package. I had to learn to bend so that we didn’t break. I love the quote from one of our members, ‘Recovery is like a cat. The more you try to pull it towards you the more it pulls away. Put your head down. Do the work. It will come to you.’
It will come to you. One day. It will.
I can’t agree more, Sarah. When there is no answer, there is a strategy. I think having that timeline with this illness would bring us to believe that we failed when we need to believe in ourselves the most. I think your take on this question makes a great sense for those who are just starting this tough journey.
What a great article. This resonates with me so much, being a year in and further on in our journey but no where near recovery as yet. Life for our family has had to adapt big time and it has taken me a while to grieve and develop radical acceptance and trust in her treatment team. I do believe this will improve one day as everyone keeps telling me so, I am preparing for the long haul. XX
Kate, we are also a year in so this article resonates so much with me too. We know this is a marathon and not a race. I’m so tempted to ask how many kilometres the marathon will be! Like the soldiers in the First World War, I thought this would be over by Christmas last year. I am filled with anxiety about the future if I let myself go there. But since it’s only an imagined future, I think I need to start imagining a brighter one where my daughter is well and our life is calm, normal and happy.
Thank you Sarah for sharing your valuable insights and daughter’s recovery journey. Recovery is certainly not a straight line process, there are no well-timed checkpoints. I am in recovery after 35 years of doing an ED, healing and resolved to my own growth. Never give up – there is hope and please ensure you fill your own cup first. Thank you xx
These reminders are so helpful. Thank you patents and supports at FEAST. Your service to parents is invaluable.
Yes Simone, I am also a Doctor and with my medical knowledge, my brain naturally goes to the worse case scenario.I was catastrophizing with every failed mealtime and worried sick for her future but I have learnt to live more in the moment, one meal , one day at a time and worry less when things don’t go according to my ideal. This illness doesn’t conform and as Sarah says everyones journey is different, unique. It has been invaluable to gain insight and support from others who have been there and are still there. So yes, Let’s imagine a brighter future because with love and perseverance, our loved ones will get there XX
Sarah, so right. I agree that if we were to throw out an ‘average of X months,’ it might be true for some, but it won’t be for all. “It will take as long as it takes,” is hard to hear, but it is honest. For my daughter, her recovery took much longer than we had hoped, however, in our ED ‘family,’ we know others who still battle on. One meal, one day, one week at a time, is how we get our loved ones, and ourselves, through this. Celebrate the little wins, and don’t let the inevitable losses defeat you.
Such wise words Sarah. Thank you
Such a great article. Thank you! We are 1.5 years in and love the days that we gain strength and feel our hope being restored. Sometimes all it takes is the next step. xo
Perfectly described. We too are over a year in and learning to cherish the subtle glimpses of our daughter. One meal/snack at a time… we carry on. Thank you for sharing… I will reread often when I need reminding ❤️
I agree with so much of this – rephrasing the question of how do we endure our time thru this, noticing the winning moments and having this group of people who get it. Thank you all
This is so helpful. We are also a year and a half in and both my daughter and I want to know how much longer. There have been so many tough days and weeks. It’s helpful to hear we have to rephrase the question.
Thank you for the lovely,honest post. We are a month into this journey after realising we. Had a serious problem. Just beginning to grasp what this all means for us, our daughter and our lives. Coming through the initial grief and learning every day.x
“How” not “How long” – perfectly stated. Thank you for this post.
Yesterday was a rough day for us. It is so hard to get up the next morning and continue to fight for, hope for, and pray for the healing of my daughter. We are 10 months into the battle and with school starting, it’s hard to know what has triggered this new round of challenges. Thank you for your honesty. You’ve given me courage to face this day and try to ride the waves.
Thank you for this article. We’re officially a year in but due to a super long wait list only at the ED outpatient clinic since September. I’m so grateful we’re starting to see glimpses of our daughter as we try to find goals and things that she wants and that she will work for… so hard to be in this place with a screaming out of control teen that literally drives her two siblings to hide in their rooms or get out of the house. It seems like the his is never-ending!