The Mighty Logo

The Isolation of Being a Parent Whose Child Struggles With an Eating Disorder

The most helpful emails in health
Browse our free newsletters

Five years ago, my son was first diagnosed with an eating disorder at the age of 12. If you had told me then what I know now, I wouldn’t have been able to conceive of how our families’ life would be impacted. After four residential treatment stays with a most recent relapse in November of last year, I began to realize the tole taken on myself, my other children and my entire social ecosystem. My son was bullied in middle school which led to his downward spiral into the comfort of his eating disorder. It was at that time that my husband and I decided to put him in a private school. When he was accepted, I was enthralled at the idea of him making new friends, joining committees and supporting his new school. I dreamed of a carefree life without a glimpse of where we would be headed or how we would be tested. I was naïve enough to think that a change of schools would stop his eating disorder.

The Mighty’s Caregiving Toolkit

His last relapse occurred right before this past Christmas. He was in residential treatment for two months in Denver, thousands of miles away once again. At month three, my husband and I were able to relocate to Denver to support him during his time in a partial hospitalization treatment program (PHP). This was our third time securing housing in Denver. We laughed and said that while many friends winter in Florida, we would once again be wintering in Denver. Hopefully, it would be for the last time.

While going through this could tear some marriages apart, it made ours stronger. We decided to seek the good in our opportunity to live in a fabulous city. In previous step-down treatments, I hadn’t had the pleasure of accompanying my husband for more than five days of a four week stay. I had another child in high school at the time that needed to be cared for. This year, however, he was in college. I was in between jobs and was blessed to be able to stay longer, which allowed me to participate daily in the therapy sessions, attend training for parents and spend time with my son.

While we were living in Denver, we discovered the cities’ many neighborhoods and cultural venues and tried to take advantage of everything we could while our son was in treatment. My husband and I spent almost four solid weeks without any time apart. While this would be stifling to some, it was wonderful for us. We had each other. We understood the task at hand and we were committed to bringing our child back in good health on a strong path forward. When you have a child in treatment, I think a relationship will go one of two ways: You will either be a united team who supports and loves one another or as we saw with some families, it will tear you apart. We worked hard to preserve our relationship and be on the same page.

I ended up coming back to our home in St. Louis two weeks earlier than my son and husband to reclaim my own life and prepare to start a new job. My time at home with just myself and the dog was lonely, but also healing. It allowed me to get our system in place prior to my son arriving back. When my husband and son returned, as in previous recovery periods, our life went back on permanent hold. The re-entry process takes time. The eating disorder patient slowly integrates back into the activities of daily living. There are guardrails that must be put in place and each meal and every snack must continue to be monitored. The first several weeks back were consumed with integrating him back into school, with his friends and his clinical outpatient team. The outpatient team is critical to the patients’ return. It is comprised of a dietitian, a primary therapist for the patient and a family therapist. The days are full, but can be isolating with no time for outside social engagements.

After committing to so many months of recovery, you cannot afford to short change any part of this period when you return home. As a parent, I couldn’t let my guard down for a second in those first few months. As you are going through this time, your spouse or partner is your true connection and companion. No other person could probably understand the journey and no other person will ever understand the complexity of an eating disorder or what you have just endured if they have not experienced it firsthand. Explaining my situation to others became exhausting, so I found us cocooning in just to survive.

Two month after returning home, we started to slowly integrate back into our own lives after being absent for five months. It was one night at dinner with two couples who were parents of my son’s friends when it hit me how much in the last 5 years I had missed. All the wonderful things I had looked forward to joining at my son’s new school, I had missed. As I listened to the wives speak at dinner about school galas, book clubs, service projects and mother and son events, I felt a wave of emotion overtake me. I literally had to step away from the dinner table that evening to pull myself to composure. Life had gone on without my son or my husband and I in it. It was a stinging reality. I was so busy, I had not even stopped to think about all that I was missing. It was not healthy to perseverate on what was not, so I never allowed myself to mentally go there.

After that evening I realized I had to turn my grief towards acceptance and gratitude. I felt even more grateful that I could enjoy and have a fulfilled life with my husband despite our hardship. He was an amazing companion. During this mental transition, I allowed myself to acknowledge how isolated we had both become living in the world of therapy, meal plans, rebuilding our son’s life and being what felt like prisoners at times in our own home. Our discussions were not company worthy for those months. We were doing what we had to do. While it was wonderful we had each other, I also began to realize how isolated we had been. Our best socialization had been with other parents in PHP group therapy.

Eating disorders not only affect the patient, they affect everything in their path like a destructive tornado. It has been a month since that daunting dinner with our friends and I have reflected on it a lot. I realize as a mom of a son with an eating disorder that I must celebrate the fact that my husband and I have done the absolute best we could to take care of our son. I sleep at night knowing we have given him every chance for success. I realized that this has been our most important mission and obligation. I also recognize that as he gets stronger and healthier each day, I have a choice. I can live in the past with regrets of a life missed, or concentrate on building for the future in our new “normal” that we exist in. That future is one that holds promise, opportunity and life.

We cannot change the past, but we can sculpt the future and strive for all that is good. If you live in the past and reflect too much on the eating disorder, it too will feed on the soul of the caregiver. We ask the patient to let it go and put it in the rear view mirror, but at parents we too must do the same. It is essential to model good behavior and focus on all that is right in your life after the horrific journey you have survived. You will always have those days of flashbacks to horror; the remembrance of the relapse and how sick your child became to the point of hospitalization. You will also have times where you feel saddened for what you have endured. It can be surreal, as though your own life was stranger than fiction. This is part of your own healing process and perfectly natural. The challenge is to not get stuck there. Resilience is everything and within your grasp. Grab it and forge ahead. If you don’t, the eating disorder continues to have a small presence in your life. It does not deserve to be there. You have worked too hard to excommunicate it from everyone’s life. As for getting involved in my son’s school, the blessing is I have another two years left. There are many opportunities in the future to do more and engage. I look forward to making up for lost time!

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via TataGD

Originally published: October 13, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home