By Dr. Theresa Fassihi, PhD, FAED, CEDS
What is a trauma? An OpEd in the New York Times on Saturday, February 4, raises the question, “If Everything is trauma, is anything?” The author expresses concern that the term “Trauma” is being used too loosely to describe any “disagreement or hardship.”
In my work as a therapist, I have found that the common understanding of trauma is usually too narrow, limited to war, violence, rape, extreme danger. I know this because when I ask my new patients if they have had trauma, most people initially say they haven’t. It is only after we have discussed what it means that they recognize that they have had traumatic experiences.
This holds true for parents of patients with eating disorders. They are usually unaware that having a child with an eating disorder is traumatic.
The Substance Abuse and Mental Health Services Administration (SAMHSA) describes individual trauma as resulting from “an event, series of events, or set of circumstances that is experienced by an individual as physically or emotionally harmful or life threatening and that has lasting adverse effects on the individual’s functioning and mental, physical, social, emotional, or spiritual well-being.” This definition is known as the three E’s – Event, Experience and Effect. Let’s look at the three E’s of an eating disorder’s impact on parents:
Event – eating disorders are life-threatening illnesses. They are physically and emotionally harmful and dangerous.
Experience – although their children may not be able to recognize the illness, most parents can and are overwhelmed with fear and helplessness. The only thing scarier to a parent than having their own life in danger is having their child’s life in danger.
Effect – parents often exhibit extreme emotions when they bring their children to treatment. They are anxious, frantic, fearful, or angry at their child and treatment providers, or avoidant of the issue, in denial. These responses are consistent with the automatic fear responses of Fight, Flight or Freeze.
One wise clinician once said that the eating disorder puts a magnifying glass on our vulnerabilities. Whatever difficulties we may have with coping are intensified by the trauma of having a loved one with an eating disorder.
It is helpful to recognize that the responses families are having to the illness are NORMAL responses to an abnormally difficult situation.
Fortunately, the most effective treatment we have for eating disorders, Family Based Treatment or FBT, can also be effective in healing parents’ trauma. As parents learn to nourish their child back to health, they regain their confidence that they can make a difference and use support to get through the challenges.
One thing we are learning, though, is that before we can teach skills for addressing the eating disorder, we need to address parents’ trauma. A common symptom of trauma is self-blame and shame, and parents often blame themselves for their child’s illness or for not recognizing it sooner. Not too long ago, the medical field was also blaming parents.
Addressing parents’ self-blame and fear is the first step to helping them support their child’s recovery, so that instead of feeling “afraid and alone,” parents can feel empowered and supported by their treatment team and the FEAST community.
This is spot on. This is an incredibly traumatic experience. Our brains get suffocated by fight or flight chemistry. We spend months to years not sleeping well, in constant worry, and often isolated within our own homes and minds. I myself have had ten years of trauma. First with my daughter and ED, the fallout, then my son and SAs and clinical depression. Followed by the pandemic and being a front line family. This past year I have really felt the effects of constant traumas. It is very difficult to heal and take care of yourself when you don’t even know who you are anymore other than a caregiver you kids trying to actively die.
I need help for a family friend. A year and a half ago their daughter went to her pediatrician( she was 12) due to her parents noticing severe weight loss. The doctor said she had to be hospitalized to be stabilized. Long story but that lead to her being released after 2 weeks approximately with a feeding tube in her nose. The parents got zero training except get her to eat ever 2 hours. The family lived in a small apt and it was hell. Their child before this was very shy, straight A, perfectionist and never in trouble. After a couple weeks she ran away from home in Feb in Ny and almost died. She was missing for like 17 hours and found outside. Search and rescue were called in and eventually her family found her. From the day she has never been home. She has mostly been in hospitals, she is refusing to speak to her parents and she tells the hospital she doesn’t want her parents near her and the hospitals go along with it. No CPS, she has never disclosed anything but just says she is mad at her parents. She recently went to a place that specializing in eating disorders and was discharged after 4 days for refusing to talk or eat. She is now with a family friend but refuses to see anyone connected to her parents. It appears she goes into fight or flight with any mention of seeing her parents. Please help. I need to give hope to this family. They are depressed and hopelessness is creeping in.
I am so sad at the lack of care this poor child has received. I live with a family member who refuses to allow family to communicate with her doctors and she withholds very life needed information which is causing her to decline in health to where her health is in jeopardy. But this family member is an adult. The fact that the places your friend’s daughter was placed for life saving treatment appear to have been negligent and sending her home without sufficient help. In our situation as an adult, my family member can refuse fluids and food. Even if she is not thinking clearly. She does not as far as I know have an eating disorder, I am in recovery from one myself. But she is such a young child. She should be getting care. Unfortunately, I do not have any advice. I can only express my concern and support from a distance. What is helping us is that we are Christians and rely on Jesus sustaining us through this difficult time. If you have a church family, Pastor, is there any way you could share with them your situation and ask for prayer for this family and yourself? I will pray for the Lord to guide you and the family in this and to provide answers as to why this young girl is refusing contact with her parents. That she would be willing to start sharing what her fear, concern, confusion, or fill in the blank is with her parents. My heart goes out to all of you. I am sorry I didn’t have answers, but God does. This young girl deserves help and I pray those involved will get her and her parents the help they so desperately need.
Katie you wrote my thoughts exactly…daughter with anxiety and one with ED…
Yes i can so relate to this not only after my d (and the entire family) battling her AN for past 5 years, I myself dx and treatment for cancer the last 18 months then my son drug addiction to deal with
I really don’t know how we continue to get up and function each day but we do
What other choice is there
Thankful for the online support offered from FEAST x
All three of my daughters had severe eating disorders. When the middle daughter was hospitalized, I had a breakdown and had to go into a PHP program for depression and anxiety. Eating disorders have scarred our whole family. My girls still have ED struggles as adults. My advice is to get help for the family asap because everyone is affected and hurting.
Yep – If anyone wants to do a study on ME, I’m IN!! (Parent of 3 young adults, AN, ARFID, ARFID)
We’re a family that has been on this horrible journey for almost 3 years! My D17 is currently on a rapid downward spiral. It’s, most certainly, affecting all of us. I believe especially my beautiful fighter and myself. Nothing about our lives are easy or our “normal “. This disease is devastating
Reading the comments didn’t not make me feel better about situation with my son, but made me feel connected, I am not alone. My 14 yours old son has been having different issues since he was 4, so it has been over 10 years now. I feel often I don’t have any more patience in me left to deal with it. I am a single mom. My son has been diagnosed with Anorexia 18 months ago, we are still not at goal weight. Eating should be simple, so difficult to understand.
I hope things are improving with your son.
Thanks for sharing. I really appreciate it that you shared with us such informative post, great tips and very easy to understand.
My 14 year old Daughter has Anorexia..for the past year. The Pandemic didn’t help! My husband and I brought her home yesterday afternoon 3 weeks on a children’s ward. Only for refeeding program no mental health help. She is under the EDT. I can’t read or think straight feeling like I’m spaced out not with it and exhausted.
After 15 rounds of the inpatient/residential/PHP cycle with my “treatment resistant” (now adult) daughter who has Anorexia, and a couple cycles of the same for her twin with anxiety/depression, I am a shell of a person. I don’t have anything left to give. I don’t even have anything left to keep at this point. I genuinely don’t know if I can survive another year of this.
I am so sorry to hear this, Misty. I hope that you have help and support for yourself.
I’m so sorry to hear. It’s really devastating. I’m a mother also supporting mg daughter with AN. We just have to do what it takes to get them better.
Our experience has been that if FBT is not successful, it is anything but therapeutic for traumatized parents. In fact, the failed attempts we have had over multiple years to nourish our child back to health have made the trauma worse. We have tried lots of things, but no program or method really focuses on helping parents cope with these strong emotions. The one ‘family session’ a week at the many places our daughter has been serves double and triple duty as an update session, logistical meeting and in there is time for maybe a few therapeutic moments. I have found that mostly, parents are on their own. Trying to explain the situation to a personal therapist who doesn’t know my child or what it is like to live day in and day out with a child with a severe ED is equally unhelpful. Sorry to be a downer, but let me know if you know something I haven’t heard about.
FEAST is actually developing a program designed to teach these critical coping skills to parents–it will include other types of skills as well. We hope to have it released by early summer.
We are 14 mo deep into FBT and I wonder if it is truly working. I am doing this solo and am merely trying to survive. When we have our weekly appointments, I almost feel defeated and attacked rather than supported. Her weight may be restored but I am a literal disaster on a daily basis. I have never felt more lost.
I completely understand this and felt the same in FBT. For us it made things worse and the blame and shame was pervasive. My daughter’s gains were incremental and consistent but the message was not enough fast enough and she was doing all she good plus getting high marks at school. It sent her into a tailspin. Another hospital stay and now 5 weeks in a different non-FBT based treatment center.
I’ve been diagnosed with PTSD. I was wondering if anyone was writing about the trauma families experience. My son’s ED happened during Covid isolation and the only thing worse than his ED was not being able to find care….and when I did find care they wouldn’t accept the insurance. It’s the scariest experience I’ve ever had and I survived a terrorist attack in London. God help these parents…employers need to be aware with parents who deal with these issues and provide them with support
I know this is late, but I want you to know you are not alone. I have a daughter who has been dealing with anorexia for 5 years now- started at 13. Three residential programs, multiple PHP/IOP programs and she refuses to get better. We religiously practiced FBT and to be honest I now have PTSD because of it. The hypervigilance that is needed to successfully do FBT is something that most parents can’t sustain, and it is very traumatic. Daughter will be 18 in a few months, and we just have run out of gas. Mutiple therapists and an ED Hospital program have told us there is nothing much we can do unless she decides to change. Seems like everyone has a “deer in the headlights” look about my daughter now and we can get no answers what else to do. In the meantime, I took an IOP class on CBT/DBT skills, wife and I have a therapist and we are on meds. It has helped a lot, especially the CBT- skills my daughter knows but refuses to use. The problem with our situation is that the trauma is ongoing and hasn’t stopped for 5 years and continuing. You can never get completely better because the trauma of ED keeps hurling towards you daily. I hope you will find some peace in your situation. There is not enough written or mentioned about the trauma on parents and the pressure we have to sustain to use FBT. In my opinion it is unreasonable.
My daughter has only now accepted that she has an ED and I have seen it coming for the past 8 years. She is an adult now, 26, and we too are running into the not taking insurance, but my fear is the speed of her decline since she has accepted this, it’s coming on fast and I am desperate to find her help. She is functioning with her amazing job and keeping up with her physical activities, but I can hear it in her voice over the phone. She lives in Mass and me in NC so a lot of phone calls. I am new to this site and me reading all your post I don’t feel alone anymore. I think this support group will be my savior and keep me strong to help my daughter. Speaking of the trauma, I personally have experienced serious trauma in my own life and came out on top, but it’s still in my head daily, but I did overcome it. Therapy provided me with great tools to move on in life and live a productive happy life. With the right therapy and hard work, it is possible to get better. I am living proof.
I am new to this website but not to ED. My Son has been on a decline since age 15, and I have fought with everything I have for over 6 years. At age 21 he is literally killing himself and I can do nothing but watch. I have such PTSD from the last 6 years that I am running out of hope, and gas. Last year I started a 12 step co-dependancy recovery program that has helped me create some healthy boundaries for myself, but with his health now in a new level of decline I am once again looking for answers and resources, even though he has no interest in getting help. Reading all your comments makes me feel less alone and I am in desperate need of people who understand. I don’t need anymore comments from well meaning friends and family that firmly place blame & responsibility on my shoulders and judgement for his “choices” and “lack of self discipline”. People in general do not understand this is a disease that slowly kills the patient and infects the family. Thank you all for your comments I feel seen in all your experiences.