Diary writing reveals eating disorder stigma and ignorance

Diary writing reveals eating disorder stigma and ignorance

Too often, our words and behaviours become lost in translation and the eating disorder (ED) wins every time. Our diary provides a place to record our truth when no-one will listen.

The Hidden Face of Anorexia

 … This illness has cost me so much, for so long
And I still don’t understand
Why am I this way?
What did I do to deserve so much pain and so much punishment, why am I so bad
Why must I be guilted into recovery, shamed into recovery or punished into recovery?
It does not work for me
I already feel guilt
I already feel shame
I have already been punished for too long
I punish myself too
Please don’t punish me
I did not choose this illness
This illness that is so misunderstood

Kate

In the medical profession and the general community, misunderstandings that EDs can be assessed accurately according to blood tests and appearance alone, can cause distress and violate the bioethical principle of “first, do no harm” (primum non nocere).

Emily’s diaries reveal instances where medical ignorance, if not callousness, led her to experience depression and associated feelings of “worthlessness, being a failure, lazy, pathetic and useless”. Her diary excerpts help to explain this odd but nonetheless infuriating and invalidating form of stigma, namely being “branded” as a problem because of the absence of a clear “mark”:

This morning I went to my General Practitioner (GP), the blood results came back fine; the doctor said I looked fine too, so ‘clearly there is nothing wrong you’. I’m again a failure, I can’t even destroy myself enough through my eating disorder. . . . [Moreover] . . . . everyone’s lives are so much more interesting, they seem so confident in themselves; I’m such a loser, I can’t even converse with people anymore.

Emily

The Pervasive Ripples of Stigma

A desire to people-please, and not be considered weak or struggling, fostered Lacey’s shame. Lacey was a leader in several positions at work and in her social life and was involved in volunteering, as well as her church community. Consequently, she feared if people discovered her deep-set self-hatred, she would lose these positions, and be shunned. Her diary provided a self-help tool in navigating this difficult period:

I was blessed to realise in recovery that instead [of being shunned] I was welcomed with acceptance, compassion, and empathy in each realm of my life. The journal was my one source of debriefing and processing at a time when I wouldn’t allow anyone to see inside my life.

Lacey

Diary-writing during childhood provided Ruby with a record from which she could later process her experiences, put them in context, and come to acknowledge and accept she was neither the cause of her family’s violence and breakdown, nor her parents’ suicide attempts. Therapeutic guidance would help her to address secrets, hitherto confined to her diary, to understand she was not responsible for the family traumas, or for developing an ED, in her childhood. At the time, however, fear of disclosure relating to the family traumas and illness together contributed to ‘quite awful’ personal choices and experiences:

I felt I didn’t have the right to have an ED (I wasn’t raped as child, there was no trigger, other people had it worse), but then I learnt that no one is deserving or undeserving of an ED and the disorder doesn’t discriminate. Understanding that things in my past had made me more susceptible to developing an ED somehow made me feel that my ED was more valid, which allowed me to feel less ashamed.

Ruby

Remember, the process of writing and re-writing your story can relieve intense feelings of stigma and shame:

I feel I need permission to eat. Embarrassed and ashamed for wanting so much. Hiding to stay alive. Selfish, greedy, gluttonous, under-serving of any nourishment that’s love. Judged and discarded for being so weak. Stand on my own two feet. Take my place in the back of the line, on the floor, behind the door. I should need nothing more.

Audra

In the Family Circle

Forgiving yourself for self-harming thoughts and behaviours is one challenge. Another is forgiving others, including friends and close relatives, who make ignorant comments. My sister, on hearing that I was seeing my psychiatrist next week, asked: ‘What? Aren’t you better yet? He can’t be any good’. Another time, when I mentioned my struggle, she asked: ‘How can you say you have an illness, when you are able to work full-time?’ She did not understand that a mental health challenge has no fixed recovery period, or that you can have a mental illness and continue to be high-functioning and productive in certain areas. Such comments strengthened ED’s voice. Through diary writing, by exploring why I felt threatened, I was able to increasingly resist the pull back to self-harming ED behaviour and importantly, reassure myself that I was okay.

Challenges in the social environment, added to inner challenges imposed by ED’s entrenchment in the mind, may impede progress along the healing path. You may be treated as though the illness and its manifest symptoms reflect a choice to behave selfishly and disrespectfully. ‘You’re just putting it on, aren’t you?’ ‘You should take a good look at yourself and think about how much you are upsetting your parents’. Such comments dent self-esteem and rehabilitative efforts when you are trying to do your best. Unaddressed stigma and its underlays of denial and secrets can cut you adrift and alienate you from those you love.

A Self-help Tool in Countering Stigma

The benefits of releasing pent-up emotion in a safe place such as the diary; learning to trust and share with people who are supportive and non-judgmental; and applying new skills such as visualization and mindfulness to overcome and address self-stigma within, are illustrated in the following excerpts:

May 21: I’ve dumped all the things I don’t want in my life into a big, deep, dark pit… I threw in anger, hurt, indecision, shame, guilt, unworthiness, insecurity (emotionally and financially), and more. I put a very tight lid on the pit and then soil and grass seed, so that it is all buried and gone, gone, gone. What a relief.

August 26: Last night… I had a little attack of depression and a little cry. Just a little. Amanda (daughter, 18) saved me. She talked to me. I told her I manage very well MOST of the time, but my parents and sister remain sensitive for me, because I’ve never been able to discuss my eating disorder with them. I told Amanda that a person with a mental illness will have their recovery chances and speed of recovery, increased many times over by their family offering love, understanding and support.

Anyway, I was soon in bright spirits again and went swimming with Amanda this morning.

August 27: I need to write, dear diary, otherwise I’ll burst with emotions I am trying to suppress. I have been trying to talk to my mother and have been getting absolutely no understanding, no reassurance, nothing supportive at all.

August 28: I did burst with my emotions last night. I burst into sobbing, but for half an hour only. Then I felt better, and no, I didn’t resort to eating. Cleaned out a cupboard instead.

December 1: I went to see Prof. (psychiatrist) and I’m glad, as he helps me think straight.

Author’s diary, 1994 (age 43)

Your Diary can be a Great Helper and Translator

I encourage you to consider your diary as your 24/7 best friend. Release your pent-up thoughts and feelings onto its pages. When feeling misunderstood by your treatment team, consider sharing relevant passages of your diary with a trusted treatment team member. Tell them this is your truth. In this way, you are helping the health professional to understand, which better equips them to help you.

• The diary extracts in this post are drawn from my book, Using Writing as a Therapy – The Diary Healer

Further Reading

Corrigan, P., Larson, J., & Michaels, P. (2015). Coming out proud to erase the stigma of mental illness: Stories and essays of solidarity. Collierville, Tennessee: InstantPublisher.

Maine, M. D., Samuels, K. L., & Tantillo, M. (2015). Eating disorders in adult women: Biopsychosocial, developmental, and clinical considerations. Advances in Eating Disorders: Theory, Research and Practice(ahead-of-print), 1-11.