Why We Wrote A Parent’s Guide to Anorexia
By Jeff and Kathy Long
When you hear the sound of galloping hooves, you think, it’s a horse. However, sometimes it’s not a horse, sometimes it’s a zebra. Our daughter was a zebra, and we didn’t know that. Teenage behavior often mimics behavior of a developing mental illness. We never knew anyone who had Anorexia, we didn’t know about mental illness and we didn’t know what to do.
Once our daughter started therapy for depression, her eating disorder spun out of control. Her doctor said she needed to get into a residential program “right now!” The thought that we couldn’t help our own child and that we would have to leave her with strangers was incomprehensible to us!
There was barely enough time to figure out insurance let alone get a handle on this disease.
As we drove home from the residential program we were heartbroken, we felt lost, scared, panicked, ashamed, guilty, and in the dark. We immediately got several books about eating disorders, but only made it about 20 pages into them. It was just too much to absorb while in a state of crisis. We were looking for help and didn’t know where to turn during this desperate and confusing time.
There were a number of times we said to each other, ”I wish we had known that when we started.” We learned things the hard way, like so many of us on this journey. We wanted our experience to matter, to help support others to be better prepared for what is ahead and hopefully lessen their suffering. We often don’t know what we don’t know, which means we can’t ask the best questions or make better decisions.
That’s what led us to writing, A Parent’s Guide to Anorexia. It is the book we wished someone would have handed us as our child entered her first residential program and we entered the world of anorexia.
We discovered there are many great people dedicated to support eating disorder recovery and they know their expertise and their specific part – the therapist, psychiatrist, nutritionist, doctor, etc. There was however no one to give an overall perspective, a bird’s eye view of this complicated, difficult disease. We found there were holes in the information that was given to us and there needed to be some type of guide or roadmap to give parents and families in crisis a foundation to understand the process and learn how to help themselves. We wanted to present parents with realistic expectations.
We created simple graphics to help visualize some of the ideas.
One example is when we were told at our first counseling session that our daughter also suffered from major depressive disorder, anxiety, self-harm, and body dysmorphia. We were devastated. We still thought that this is “just” an eating disorder, not a mental illness. It wasn’t explained, or we didn’t comprehend, that many cases of Anorexia come with accompanying co-morbidities and they overlap.
Co-morbidities, are the simultaneous presence of two or more chronic conditions.
We were also under the impression that because insurance decides your child is at a stable weight and ready to go home, then they must be well on the path to recovery. You don’t hear that it can take a child 2 weeks to become compliant and around 90 days to change a strong pattern in the brain and perhaps much longer for Anorexiato loosen its grip.The fact that recovery is anything but a straight line would have been really good to know.
There is the hopeful vs. actual recovery image that is used for many types of recovery. It’s a good visual reminder for everyone to understand the process.
We also created a Treatment Graphic, a visual for parents to see how things are connected and the various treatment options. It’s important to know each person’s path is unique in both treatment and severity.
In our journey, we tried as many different kinds of treatments as we could. Money and insurance can be a factor. We didn’t cover them all, but we tried many.
To us, it often seems like anorexia is a 10,000-piece puzzle that only the sufferer can put together and for the most part, the sufferer doesn’t want to do that. As parents we discovered that our job was to keep showing the pieces, to try different treatment, different medications, etc. Some pieces seemed bigger than others and you never know how your child will put them together. Here are just a few kinds of the many treatments available.
We came across many people on our journey, some amazing, some not so great – we learned from both. We found Dr. Lauren Ozbolt who introduced us to genetic testing for medication. This was a very big puzzle piece for us and we strongly recommend this approach. We saw an immediate shift that probably saved our daughter’s life. She had been grossly overmedicated and on medications that were not good for her.
We were told from the beginning that self-care was important, but we didn’t get to it until we were totally exhausted and had little left to give. We can’t express how important this is and how important it is to take care of yourself as soon as possible.There is a reason they say to put your own oxygen mask on first, or you can’t pour from an empty cup. Get counseling, go to support groups, do what feeds your soul, walk, meditate, take a yoga class etc. The saying, “pain is inevitable, suffering is optional” is often attributed to Buddhism and used in 12 -Step programs. This is a good adage for parents dealing with this disease. The pain is a given, but what we do with it is a choice. Through constant self-care, and the acceptance of the disease and the process, one has the strength to help their loved one get on with recovery.
When you go through something like Anorexia with someone you love it can destroy your child, your family, and you personally. Yet, anyone who goes through something difficult and life altering may eventually say that the very hard experience gave them some gifts, strength, resiliency, faith, bonding, deeper compassion, and understanding. We appreciate we are one of the lucky families. Our child continues to embrace her recovery, speaking to high schools with her treatment center, and making a difference where she can. She knows there is a long way to go, but she is on the road. We will continue to share our story and the lessons we have learned with anyone who wants to hear about it. Our goal is for our small book to make a big difference in many lives.
After a forest fire there’s always new growth, there is no rainbow without the rain.
If you have been challenged with this disease you will be called upon to grow and stretch in ways you cannot imagine. We wish all who are on this path strength, courage, and wisdom.
We wish you well, with love and encouragement.
In the final analysis, we were compelled to write this book to share our journey and experiences in hopes to help other families through this difficult time. (Surprisingly, it turned out to be a little cathartic and healing as well.)
About the authors:
Kathy Long is the mother of 2 teens, her daughter is headed off to college in the fall and will continue to get support for her eating disorder. She and her husband are the authors of “A Parent’s Guide to Anorexia” and are currently working on another teen mental health project. Kathy has also spent the past 25 years working as an Acupuncturist and Integrative Medicine practitioner. She strongly believes the adage that while ignorance may be bliss, real power comes with knowledge and finds this very much the case with eating disorders. Knowledge takes us out of the dark unknown and provides tools for understanding and growth.
Jeff Long is a writer, director and producer who has created
TV commercials, documentaries, and videos. His passion is family, helping people, and building communities. He lives with his wife, two children, and Ace the wonder-dog in Southern California.
Arnold, C. (2013). Decoding anorexia: How breakthroughs in science offer hope for eating disorders. New York, NY: Routledge.
Long, Nicholas. www.lsci.org