By Dulce Petagara
Dedicated to my daughter: this journey pushed me to find strengths in myself I never knew I had
It’s been several years since the awful Eating Disorder Monster came into our lives. My daughter was a sophomore in college when she called me in the middle of the night, crying, expressing hopelessness and begging me to help her, to save her from anorexia. The Eating Disorder Monster had a tight grip on her and had been torturing her for several years. We had no idea.
I had no experience with eating disorders; part of me was in denial and another part was gripped with terror. My daughter was living over 600 miles north of me in another state. I calmed her the best I could, or was I trying to calm myself? Then we hung up, and I dove into the internet. I researched eating disorders, anorexia, treatment programs (so confusing), Facebook, our medical insurance provider (what treatments are covered?), airlines (I needed to get her home), meal delivery services (was she so busy she didn’t have time to cook?). I was desperate for anything and everything I could latch on to that might provide the answers I didn’t know I was looking for….
The first year of treatment, well, we all failed – the treatment program, my daughter, me, our family, everyone. We simply were not equipped for various reasons that don’t matter right now. We thought she was recovered “enough”, so back to school she went.
The second year of treatment (yes, this was relapse year) was miserable to get through but we not only survived, my daughter and our family became better informed, and so we all did better. You could say Mama Bear got woke.
Think about this. After a patient completes a residential, IOP, or other treatment program, are they RECOVERED? No, the patient is not recovered.
It is a huge mistake to think discharge equals being fully recovered.
Treatment programs stabilize patients and then release them to continue the process, frequently recommending follow up care with a less intensive program. The patient, upon discharge, is RECOVERING and working towards BEING RECOVERED. It is a very complicated process.
So this brings me to the reason I am writing.
That space between RECOVERING and RECOVERED. This is a tough, extremely challenging, downright brutal place for patients and families to be, and requires a lot of support from caregivers to the patient, and motivation on the patient’s part to work through it all. There’s just no way to know or predict how long it might take a patient to work through this space. This is what makes recovering so scary for everyone. There are no shortcuts. It takes time and hard work to move past recovering and into being recovered.
What makes it so hard? Some reasons are: a patient can find great comfort with their eating disorder; for others, the eating disorder won’t allow them to leave and is quite literally holding them hostage; still others like it because it is where the eating disorder voice is more quiet and not beating them up so they “appear” fine. The patient eats just enough and manages to function adequately. Yet, the patient, in reality, is struggling desperately to hold it all together.
The patient is living, you could say, Half Way Recovered.
What is Half Way Recovered? It is a place where the patient isn’t FULLY recovered, yet they are medically stable enough not to need residential care. Vitals and labs may be okay and weight may be “fine” but not high enough to permit full recovery to take place. Eating disorder behaviors are present such as micro-eating, skipping meals, or not eating with loved ones because “I already ate”.
I believe that sometimes as carers, because we are so tired and worried, we start to convince ourselves that half way recovered is “good enough” because we have all done so much hard work and it feels like that’s all we do, and our patient (yes PATIENT) seems better. We somehow decide it’s time for this crazy ride to end. But is half way recovered for our loved one ok? NO, it is not a place where we want our loved ones to live the rest of their lives. Half Way Recovery could be called purgatory, half way stabilized, half way treated, half way living, and even the opposite – half way dying.
Half Way Recovered patients are not fully recovered. They are at extremely high risk for relapse the longer they remain half way recovered. Imagine our horror at having to deal with a second round of eating disorder treatment!
Why is it easy to slip into an illusion of recovery? Recovery work is the hardest thing in the world – for the patient, for the family, and for anyone who is helping as a carer. It gets exhausting to monitor every meal, every snack, shop, cook, plate, supervise, and take care of other family members and obligations like work, and so when the patient finally reaches “goal weight” – OMG! WOW! It’s like you’ve won a football game and you are ready for the after party. And IT IS cause for celebration!
But you have NOT won the Super Bowl. You have to win enough games to make it to the playoffs on the way to the Super Bowl of Recovery.
What are some of the challenges? The journey through weight restoration to goal weight is simply awful. Full brain restoration can take many months to years. There could be body dysmorphia, treatment for issues that have developed from long term malnutrition (ie., osteoporosis). ALL these things need to be addressed to get to Recovery. However, recovery is worth every tear, battle, and sleepless night. There will be many “fails” along the way. That’s ok! You can do this.
How can your loved one stay in recovery? A very important part of recovery is recognizing behaviors and triggers that can lead to a relapse. It means being fully aware and mindful of behavioral patterns that can create a negative energy balance that lead to sustained starvation. Some examples are skipping meals, eating smaller portions, and limiting foods and food variety.
Don’t settle for half way recovery.
Your child deserves to be fully RECOVERED, AND LIVING their best life.
And you, parents and carers, you also deserve to be living your life, free of the Eating Disorder Monster, too, AND watching your child thriving in full RECOVERY instead.