Many people who have an eating disorder are terrified of others close to them knowing about it. I refer to people who are able to attend school, attend college, go to work, be a parent. People who have an eating disorder and pretend, to their outside world at least, that they are okay. The cost is high. Both personally and for our community.
For decades I kept my eating disorder a secret too – I worked in a newspaper office, I had friends, who knew nothing about my illness. I felt ashamed of my illness. I felt that I must be weak-minded, not to be able to cope like others – to be like ‘normal people’. I envied anyone who could eat lunch and not feel guilty about it! I will never forget the awfulness of wanting to be like others, to belong, to be carefree. Instead of being caught in a vicious cycle with the eating disorder, not knowing which way is out.
To disclose or not to disclose
Welcome discussion is taking place regarding the decision to disclose or not to disclose one’s eating disorder history in the work place – including among health professionals who have had, or continue to have, an eating disorder. This reminds me of the gay movement. Which is worse – hiding in the closet in fear and pretending you are someone you are not, or risking being true and open to all? For me, the bottom line is that while we hide in the closet, the eating disorder has the upper hand. This illness thrives on secrecy and darkness. We need to bring it out into the light, and keep it in the light. For me, the benefits far outweigh any negatives.
This discussion reminds me also, of my youngest son, who developed Juvenile Diabetes at age 11, the same age I developed anorexia. He is almost 40 now, injects insulin four times daily, and has a successful career. In his professional life, he has always not disclosed his illness because he did not want to be considered ‘different’ or ‘a victim’; he wanted to be considered ‘normal’ and to be judged on his merits and skills. That is, he did not want to be defined by his illness in any way.
In regard to ‘going public’ with my eating disorder, I waited many years, until I was 55 and feeling fully recovered and strong within my sense of Self, before sharing my story. Throughout my journalism career of more than three decades I did not disclose my illness to employers, because I, like my son, wanted to be considered ‘normal’, even if it meant I was functioning on about five per cent of my brain capacity at times. In addition, I feared discrimination and rejection for disclosing a mental illness. One hopes that would not happen but I had good reason for considering that judgement about ‘being different’ was a strong likelihood. I feared I would lose my job, and would have no hope of advancement in my career.
The Eating Disorder Loves Secrecy
The difference here is that illnesses like diabetes are typically considered ‘acceptable’, whereas an ‘eating disorder’ continues to face suggestive put-downs/ignorance/misunderstandings/weakness/you-cannot-be-relied-upon/cannot be trusted etc. The cost of trying to hide the illness, keep it hidden, is that the illness is not dealt with fully, it has permanent residence in the brain as tormentor supreme.
To remove the stigma that causes many people to suffer silently, I believe we need more people who have recovered from their eating disorder to stand up and show this illness and the community at large that we are perfectly able to recover and live full and rewarding lives. As with other serious illnesses, we may relapse now and then. This is part of life. People with an eating disorder have done nothing wrong! Their experience makes them more reliable, dependable, resilient, empathetic than most.
“And by the way, I have had an eating disorder”
To confront the stigma/rejection/misconceptions in our communities, including our health care systems, I believe we do need professionals to stand up, as some already do, and say “I have all these qualifications and have worked hard on my career, and by the way, I have had an eating disorder”. There are ethical concerns of course, and responsibility and self-care is vital – one needs to be able to say “I need time out to care for myself right now” when relapse symptoms appear. This occurs with other illnesses; it needs to be okay for people with eating disorders, too. To know that you can have an eating disorder and have a full and rewarding career, be a wonderful parent, be whoever you want to be, is a message we need to spread. Recovery from an eating disorder requires a lot of courage from Self; and for best results, to maintain recovery, it requires openness and acceptance in a village of people who understand and who care.
We hear a lot of stories about people who are suffering the illness, anorexia in particular (because it is the most graphic for media). To counter this we need a lot more stories from people who have recovered and as a result of their personal struggle, they are celebrating life deeply, meaningfully, and are able to offer empathy and support in a way that those without experience of the illness may never know.
I am trying to say that we need to ‘normalise’ eating disorders – they are part of life, and need to be acknowledged openly and in the light. This is the best way of reducing their impact, of reducing the stigma, the fear, the loneliness, the isolation.