by: Mary O’Brien
“Hello everyone. This is your captain speaking. We are coming into severe weather with lots of turbulence. It is unclear how long this will last and are working with the experts to determine the safest path forward. We advise you to buckle up and put away all personal belongings. We have lowered the oxygen masks for your safety. Please apply one to yourself before your child. Hold on…here we go!”
Hi all, This is what it felt like when my daughter was diagnosed with anorexia nervosa when she was 7 ½ years old. It has been 8 long years now. We didn’t know how long it would take to get her better, which treatment approaches to use, and if we would ever have a “normal” personal or family life again. I put my academic career on hold; it is dead now. And I have since been diagnosed with PTSD and Bipolar Disorder, both of which compromised the success of Michele’s treatment. I didn’t find F.E.A.S.T. until about a year ago. In fact, it was at the FEAST of Knowledge meeting in NYC in March 2018 where I met this amazing group of parents and professionals. They provided me with my own oxygen mask and encouraged me to use it.
I can honestly say that the parents at F.E.A.S.T. may have saved my life.
I know this space is typically about our children’s mental illnesses and eating disorders and available research-based treatment options, but it is also about how to take care of ourselves as parents of children with EDs. I think I was in shock for at least the first 6 months after my daughter’s initial ED diagnosis. I tried to make it through each day, getting my other daughter off to school, then going to the hospital, coming home after school to make dinner and wait for Jim to come home, then sleeping overnight at the hospital. Jim stayed at the hospital on weekends while I caught up on some time with my other daughter. I don’t think I will really ever catch up on that time away from her though. Realizing that I could not keep up this kind of schedule, I reached out to family and friends, but they were freaked out with the diagnosis of an ED and shied away from us. I am sad to say that one family member even said, “Don’t keep talking about it!” and “Don’t tell your friends!”
Throughout those years, I was hypervigilant about food and what everyone was eating at home. I was irritable, fidgety, couldn’t concentrate and started arguing with a girl with anorexia! A pre-teen with an irrational, yet-to-be fully developed brain, still not achieving her weight goals, and now diagnosed with Oppositional Defiant Disorder and OCD. She and I often clashed and the tension at home was terrible. I did not know how to handle her rages, tantrums, and manipulations. Fast forward to 2 years ago, and after several visits to doctors to find out why I felt like s*#t all the time, I was diagnosed with PTSD (from the trauma of dealing with the impact of an ED on my whole family) and… Bipolar Disorder! What?!
Are there articles about how a parent with a mental illness can successfully parent a child with an ED? After finding the right medications, engaging in talk therapy and parent coaching, and making a few intentional lifestyle changes, I am in a safer, healthier place. I use the oxygen mask on myself every day. And it means I am better at keeping up with my daughter’s behaviors, severe and violent tantrums. And I can look out for my other daughter’s mental health concerns and support my husband’s well-being. I am finally beginning to see a future for myself, something that I have not been able to do for over 8 years. And I believe that it is OK – I am allowed to. One of my plans is to become an advocate for the mental health of parents with children with EDs. I will encourage ED physicians and professionals to screen parents for PTSD, depression, and anxiety and have a referral network at the ready. Most importantly, I want to promote F.E.A.S.T. as much as I can to save the lives of other parents whose physical or mental health or both has been compromised.
F.E.A.S.T. provided me with these important concepts that have kept me going:
1. It is OK to HATE the unplanned situation you are in. It is OK to say, “This sucks!” because it does.
2. Try to use the parent support resources available on F.E.A.S.T. and get grief counseling for YOURSELF to cope with the loss of a normal existence, a career or job, friendships and family, and freedom for leisure pursuits.
3. Remember it is NOT your child’s fault. She or he did not choose to be sick with an ED.
4. AFTER you take care of yourself, mentally and physically, be sure to check on your spouse and other children to address their individual needs.
5. Use the tools and interventions that work best for YOUR family. You may have to try a few to see what works best.