Severe and Enduring Anorexia Nervosa – should we ever give up?
by June Alexander
‘Should we ever give up on someone who has severe and enduring anorexia nervosa?’ Treatment teams vex over this life and death question, but I believe we must never give up. We must do better. Much better. We must provide better care for people who have SEAN, and we must improve early interventions and prevention programs so that the illness does not develop at all. We. Must. Not. Give. Up.
Excitingly, good things are happening. A shift in perception and paradigms* is occurring. Our researchers are discovering answers by listening more deeply to the patient. They are realizing and treating the patient as a person, not an illness. They are realizing that the illness, not the person, is the problem. They are realizing the solution lies in helping the patient find ways to address their relationship with the problem. They are realizing that recovery from an eating disorder is as much or more about the mind as about food. Above all, they are realizing that recovery from SEAN is indeed possible.
Sharing our stories of illness and recovery is important for they provide our researchers and healthcare teams, and ourselves, with perspectives and insights on how the illness becomes entwined with, and impacts on the development of self, the social and cultural structure in which one lives, and with individual biology, genetics, life experiences and traumas.
I was invited to present a workshop on SEAN with Dr. Anthea Fursland and Prof. Stephen Touyz** at the 2017 ANZAED conference in Sydney. Feeling safe and secure, sandwiched between these two leading researchers, my role was to reflect on how my SEAN developed, how it might have been prevented, and where the clinical intervention, or lack of, impacted on my health, life and family. Here is a summary of what I said:
When we miss the chance for early intervention
I developed Anorexia Nervosa (AN) at age 11; my treatment for Severe and Enduring Anorexia Nervosa (SEAN), together with chronic anxiety and depression, began 20 years later.
My story illustrates how missed opportunities for early intervention can lead to SEAN and other complications and, importantly, how healing can take place.
I was the second daughter in my family and, for my first 10 years, was a sensitive, eager-to-please, conscientious, naïve and anxious child.
POSSIBLE PREVENTATIVE ACTION: If girlhood had been explained before onset of puberty my anxiety may have been less.
Such explanation may have helped me to feel better about who I was; that is, identity confusion could have been minimized. My periods began a week after my 11th birthday…I was a tomboy and truly felt the sky had fallen in at this indisputable evidence of being female; I was the only girl in my small school developing breasts and was very self-conscious. When a school doctor’s visit was announced for mid-year, the fear of undressing in the vicinity of others, especially my male teacher, intensified my anxiety.
POSSIBLE PREVENTATIVE ACTION: Having an understanding, non-judgmental person to talk to about my fears and shame may have appeased my anxiety.
A coping and survival tool
When I said I didn’t want to undress for the school doctor, my mother and sister both said, “don’t be silly, other girls will be undressing too.” Such responses caused my fear and anxiety to become more intense and internalized as I had no one else to turn to. This is when AN thoughts developed. These thoughts offered a way to ease my anxiety. They provided a coping and survival tool.
POSSIBLE PREVENTATIVE ACTION: The school doctor could have been told of my drastic weight loss/refusal to eat/exercise compulsion/mood changes in weeks prior to his visit, and he could have referred my family and me for specialist support and follow-up.
My parents did take me to a psychiatrist at age 12, for two or three sessions. I was told I, “did not want to grow up” and “wanted to be a boy” (no wonder, as my mother called me “Tim”).
POSSIBLE PREVENTATIVE ACTION: The psychiatrist could have suggested family therapy, to ascertain why I did not want to grow up.
With no trusted adult with whom to share my fears, a diary became my sole confidant from age 12 until age 27, when I sought professional help for the first time.
The diary documented the evidence
POSSIBLE PREVENTATIVE ACTION through the narrative:
If an understanding therapist had observed my passion for writing and gained my trust as a 12-year old, I may have been encouraged to share parts of my private diary with them. I felt safer and more able to communicate through writing than talking…this would have assisted the therapist in making a correct diagnosis, for the very first page of my very first diary presents strong evidence of an eating disorder. Through the medium of the narrative, the therapist could then have gently challenged the obvious eating disorder thoughts.
Without intervention, I survived by transitioning to anorexia-bulimia and pouring out my increasingly isolated, confused state of mind and desperate attempts to self-manage, into my diary. I gained some weight and was considered “normal” again. But I wasn’t.
At age 14 my mother took me to a GP because my periods had ceased for more than three years and the GP prescribed what is now known as The Pill. Now that I am older and more informed, I am very cross about this ‘remedy’ for it addressed a physical problem, but ignored and did not treat the cause; it ignored the emotional and mental impact and effects of AN.
POSSIBLE PREVENTATIVE ACTION: If doctors had inquired why periods had ceased for so long they may have diagnosed my eating disorder and treated the cause.
Instead, medication was prescribed and after six months my periods did resume. I blossomed like a heifer being fattened for market and gained a lot of weight in a short time; everyone said how “well” I looked…my hormones were stirring but my brain remained in the clutches of AN. My eating disorder was becoming more embedded with each wrong turn.
Traumas add to the layers
At age 18, I was a passenger in a busload of exchange students that hit a railway overpass in Boston and, at age 20, 8 weeks after my marriage to childhood sweetheart George in Australia, my car hit a large log truck on my way to work. The two road traumas added complexity to early childhood traumas and the SEAN. No counseling was offered.
Having babies became a diversion and by my fourth pregnancy in four years, at age 25, my mood swings were extreme, and my body was lacking important nutrients such as iron.
CRITICAL NEGATIVE POINT: No health professional questioned weight loss during each pregnancy or my insistence for tubal ligation two days after birth of my fourth baby (I was terrified that if I went home without the operation, I would feel compelled to become pregnant again).
Each pregnancy had provided a defined goal post in my bid to eat normally; the fourth pregnancy was a last desperate attempt, but of course I failed.
Within months I became suicidal and at age 27, fearing insanity but driven by love for my children, I dared to reveal my troubled mind to a GP for the very first time; misdiagnosis ensued for six years.
CRITICAL NEGATIVE POINT: No doctors queried the possibility of PTSD from road trauma or post-natal depression, or abuse as a child … or SEAN.
So many layers – where to start digging?
None of the doctors I saw had specific expertise in treating an eating disorder — by now there were so many layers, where and how could the healing process start?
CRITICAL NEGATIVE POINT: My husband was not invited to attend counseling sessions with me.
Even when my condition was correctly diagnosed in my early 30s, my husband was not encouraged to attend.
No idea who I was
Powerful prescription drugs numbed my brain, but caused many side-effects and behavior problems: after more than 20 years with SEAN I had no idea who I was; George was told I was entering a crisis and to be “more like sugar than vinegar;” I became convinced he was the reason I could not recover; George has forever blamed my long-time psychiatrist for our divorce. I have had to accept that the loss of marriage and family of origin were part of the cost of my SEAN.
The tipping point
CRITICAL POSITIVE POINT: Although my family of origin labeled me “the problem,” most clinicians tried to help me…none confirmed my deep fears of being “mad and bad” and of being unworthy of caring for my children.
Even when doctors did not understand (and my illness fooled them as well as me for many years) they encouraged me to maintain diary-writing, and employment.
CRITICAL POSITIVE POINT: Doctors observed that work helped me connect with a fine thread of wellness.
At a time when insanity and death beckoned, work offered a tenuous belief that a small part of me was worthwhile and okay. For instance, when I was an in-patient at a mental health hospital, I worked at a newspaper during the day, and returned to the hospital at night…work was part of my therapy, and so was writing.
CRITICAL POSITIVE POINT: My psychiatrist, GP, dietitian and neurosurgeon adopted a collaborative, holistic approach.
Besides monitoring/treating clinical symptoms, my treatment team also guided and encouraged exploration of self, and re-entry to mainstream life…this was essential in gradually reconnecting authentic mind with body; work was encouraged as it provided self-esteem, social connection and financial independence. Writing provided a way to reflect on experiences, repackage pain and hurt, identify and modify patterns of behavior, develop new thoughts and explore new ways of coping.
My treatment team taught mindfulness, and helped me to develop self-awareness skills in recognizing, separating and nullifying illness thoughts; their trust and belief in me as a person was crucial at a time when I did not believe in my self; and in coping with distressing childhood and family revelations.
The power of love and patience
When feeling confused or uncertain (is this thought of true self?) I gradually gained courage to trust the guidance of people who I knew had my best interest at heart, more than my long-embedded illness voice. Next I gradually learnt to trust my true self more than the illness voice.
CRITICAL POSITIVE POINT: The unerring patience and belief in me from doctors, family and friends over many years, enabled recovery at age 55.
While I have regained my health and self, and embrace ongoing self-discovery, which includes the joy of being a grandma, some losses due to SEAN and associated shame/stigma have been irretrievable.
My treatment team, family of choice, friends and my ongoing diary-writing have helped me to accept these losses and associated grief and sadness, and focus on living fully in the now.
Yes, recovery from SEAN is possible. I love life. My life.
*Touyz, S., and Hay, P. (2015) Severe and enduring anorexia nervosa (SE-AN): in search of a new paradigm, Journal of Eating Disorders, 2015 3:26
**Touyz, S., Le Grange, D., Hay, P., & Lacey, H. (2016). Managing severe and enduring anorexia nervosa: A clinician’s guide. Abingdon: Taylor & Francis. (I am a contributor to this book, with a chapter on the patient’s perspective).
Email from Karyn:
This is wonderful June, once again l feel very sad for you my friend, that you had to go through that for so long without being acknowledged. YOU have never given up on the hope that there are answers and YOU are the reason you are here to tell this heartbreaking lived hell. I’m so blessed to know you and to know that you had every valid reason to give up but you didn’t. Your little pocket of love you gathered and kept in a safe place in your heart has grown full and overflowing now and you have more love around you and for you all over the world because of who you are and were born to be, l love you. I. LOVE. YOU. From karyn braveheart
Thank you for sharing your story, June. You exemplify how hope, faith, and perseverance in connecting with and restoring your self provides healing. You are a light for so many, a true inspiration, and a leading voice of the lived experience of trauma and eating disorders.