Islamic Society (RUMS) – Life Behind a Label: Shattering Stigma Through the Light of Science and Islam- Hassaanah Amejee speaks about her Battle with Eating Disorder in Pregnancy
We were given a unique opportunity to speak at Islamic Society (RUMS) – Life Behind a Label: Shattering Stigma Through the Light of Science and Islam on 22nd January 2017. This was a medical conference on stigma and superstitions inclusive of an Islamic perspective. There were 3 panels of renowned speakers discussing eating disorders, black magic and addiction, with each panel followed by a question and answer session.Hassaanah Amejee represented ‘War Against Eating Disorders’, and we are forever grateful to her for gathering the courage to speak about one of the most profound and most challenging battles of her life. Hassaanah Amejee spoke about her battle with Eating Disorder and her journey into motherhood with this menacing illness.
Please watch the Video and I’ve also copied the transcript of video as well.
On Saturday 22nd January 2017, UCL RUMS Islamic Society hosted annual mental health conference, this year named “Life Behind A Label”. This year’s theme was Stigma and speakers of a range of specialities and backgrounds were invited to speak on Eating Disorders, Addictions and Black Magic from psychological, social, medical and Islamic perspectives. Alhamdulilah the event ran successfully and for the first time ever, the conference was live streamed on Facebook. We are very grateful to the speakers who donated their time to speak to us and to those who attended the conference.
Hassaanah Amejee sharing her own experience with eating disorders
I’d like to start by saying thank you for the opportunity to speak about this important topic.
Having an eating disorder is an incredibly lonely experience, for many it seems as though your world narrows down to a point.
For many, eating disorders brings up images of teenage girls, struggling with body image looking at glossy magazines and feeling inadequate. For some people suffering with eating disorders this may ring true, but the truth is that eating disorders come in many different forms.
For the last X years the blog Islam and Eating Disorders has helped hundreds of young women from across the world. In many cases, these people have little to no support in their country and are seeking any support that is available.
In some cases, these women have told us that their cultures do not even entertain the fact that eating disorders could be occurring. Dr Nancy Snow, who was exploring the rise of eating disorders in Japan, said this of the culture there and it rings true for many people. She mentions that people within the culture are often reluctant to talk about the issue. As the disease is “not connected to [the culture], and is seen as an import, it can sometimes not be picked up on for months or even years.
Many young women I’ve spoken to talk about a lack of understanding within the community. A sense that those with eating disorders are ungrateful in some way because of their restriction, or that they are sinful for wasting food due to purges. The reality is that not openly discussing these issues from a young age leads to feelings of isolation which can become dangerous when you start to look for support in the wrong places. Such as pro-anorexia, or pro-ana as they are known, forums or groups. These groups are incredibly worrying, using hashtags such as #Thinspiration, social media suddenly becomes a place filled with inspiration for an illness. (Change slide)
A quick sweep of many social media sites and any young person has just become exposed to hundreds and thousands of images promoting a dangerous body weight mindset. I remember speaking to a young girl when I was working with my local youth centre. She had become increasingly withdrawn and I noticed that she was losing weight. She told me her family were happy that she was losing weight as culturally women were supposed to be ‘petite’, ‘small’ and ‘dainty’.
This is not the first time I’m hearing this. This rhetoric does exist within our community and serves as a backdrop for all those suffering with the disorder. (Change slide)
We know according to Islam that Allah SWT has sent us a cure for each disease, but when we refuse to look at eating disorders as a problem within our community we shut the door to any valid and important communication around this subject. In essence, we are telling our young people to find support in other places.
There is little to no data which exists about Eating disorders within the Muslim community. My own understanding is that it is on the rise.
This is one of the reasons we pushed to discuss this issue and many like it on Islam Channel’s flagship women’s show, Women’s AM, which I am part of. We first discussed the topic in 2013, and have continued to bring this issue to the forefront of discussion within our line of work.
I could not speak about this topic without mentioning my own experiences with the illness.
This is the first time I am speaking in public about my experiences and I ask for your patience, so please bare with me as I take you through my journey dealing with an eating disorder.
My own experience is a battle of more than fifteen years. It’s a journey which has taken me from my early teenage years as a young girl just starting to discover my own identity to now, as a woman, as a mother myself and all the milestones in between.
It’s not an easy tale to recall or to retell. Having an eating disorder, and I talk about it in the present tense, is difficult to explain.
The only way I can even begin to describe what it feels like is almost going through life with another person on your back, dragging this weight around in your daily life. Living with an eating disorder means constantly fighting with yourself, and it’s renewing the choice to fight every single day. It’s a battle which takes place in your mind, and it’s one which sometimes takes every ounce of willpower.
My own experiences began when I was around fifteen years old. I had a very fortunate childhood. I’m blessed with incredible parents Alhamdullilah, wonderful siblings and a fantastic support system. It didn’t matter how hard I tried though, I always felt inadequate. I always felt that my life was somehow out of my control. I was excelling in school, I had lots of friends and from the outside I was behaving like any normal teenage girl would. On the inside however, I was never good enough. I, like many other sufferers, constantly strove for perfection. This constant battle to be the best inevitably led to me feel like I was always lacking. And because I couldn’t control everything in my life, I started to take control in the areas I could. Namely my food. It started slowly.. I began to cut down my portion sizes, almost without realising it at first. I lost some weight and when people began to comment on how thin I was looking I realised that this was something I was winning in. Now the competition became even more fierce. I needed to be the thinnest, I needed to disappear. Only then could that person whispering over my shoulder every day finally be pleased with me. But it was never enough. On my darkest days when I got through on just sips of water and a few crackers, I began to feel like the only way I could achieve perfection was disappearing all together.
The thing about eating disorders, and many other mental illnesses is that it erodes away your personality, your identity until that’s your whole world. I lived like this for years, fighting myself until I gained some weight and then completely berating myself until I lost the weight again. And on and on it went until I turned 19. Through this time period I continued to study, I continued to work hard and in fact I was behaving like the model student and daughter. It was very difficult to tell that I was suffering with any kind of issues at all because I became incredibly efficient at hiding my feelings.
When I turned 19, things started to fall apart a little. I began to obsess about my weight like never before. My day began with constant weighing and measuring. My day ended with visits onto secret banned ‘thinspiration’ forums for people like me. Secret forums which had to keep changing websites because the urls would be blacklisted by google. On these forums I was surrounded by people who thought just like me. I became sucked into world where nothing else existed. I was very good at hiding the problem. I would attend university during the day, volunteer at my local youth centre in the evening and return home once dinner had finished. I would take a plate out, cover it with crumbs, leave some on the table and clean up after myself to make it seem as though I had eaten a full meal. I was an expert at hiding my tracks. To avoid being seen and to keep my mind occupied, I was busy seven days of the week. When I wasn’t working I was volunteering, in fact I was my most active in terms of helping my community when I was in the midst of my illness. My family were surprised but happy with my busy schedule as they could see I was striving to help my community, but unfortunately in the process I was losing myself.
It was at this point I was losing my grip on the situation. I was taking on more and more responsibilities and my weight was dramatically reducing. I was at this point a UK size 2, or American size 00. I was barely standing upright. My family were becoming increasingly concerned, but I refused to acknowledge a problem existed until I could no longer walk up the stairs anymore. My every movement was an effort. It was at this point that I was referred for professional help. I reluctantly attended, convinced that there was nothing wrong with me all the while hearing the voice in my head telling me this was yet another thing I was failing at. Being caught was tantamount to failure.
It took me a long time to realise that the voice in my head, was now so powerful that it has drowned out my own personal voice. I had lost myself to my illness. I’d like to read an extract of something I was encouraged to write during my therapy. It’s addressed to the burden I carried with me for so long.
“I don’t want to measure, judge, restrict, purge, hide or lie anymore. I don’t want to wake up and wish I hadn’t. You are there, before, during and after I lift my hand to my mouth to eat SCREAMING at me and I can’t breathe. You make me sick. You make me feel like throwing up everytime I catch sight of myself. You’ve taught me a new language- one that revolves around calories, BMI, goal weights and measurements. You have taught me a language I don’t want to know”
Listening back to the young version of myself, I feel once again how powerful the illness can be. I remember thinking how easy it was to lose myself in the illness. I am not proud to admit I used religious devotion as a means of disguising my illness. Modesty was an excuse for my ever increasing baggy clothes and I used segregation as the reason I was becoming more and more withdrawn. I used my time as a way of hiding what I was really doing. At the time unfortunately my therapy did not prove to be successful and after almost a year of intense treatment my weight was even lower than when I began.
It was at this point that I had a car accident which completely changed the course of my life. I began to see things from a completely different perspective and my therapy began to become effective. One of the major areas which helped me to, essentially, retrain my brain was spirituality. By understanding that God was merciful and that He wanted me to strive for excellence in my worship I began to quieten the negative voice which I had been burdened with for so long.
After almost two years of engaging in what I would describe as spiritual therapy my anorexia slowly began to not form a part of my daily life. I was understanding my purpose and my health and wellbeing were something I nurtured.
Ramadan, however continued to be a difficult time period for me. Fasting, for many people who suffer with eating disorders is something which is done to restrict. For myself, I looked forward to Ramadan as it almost seemed like my restriction was legitimised during this time. It was only after I began to understand the true meaning of fasting that I realised in order to benefit from Ramadan i actually could NOT fast so that I was not mixing up my intentions during this month.
Despite many reassurances from my doctors and my Islamic teachers, I could not help but feel that I was being a bad Muslim by not fasting during Ramadan. This was exacerbated by many from within our community who made me feel as though I was sinning by not completing my fasts. I felt compelled not to eat during the day even though I was medically under orders to eat regularly. I felt a distinct lack of understanding from the people I was coming into contact with and it pushed me to fast even when I knew I shouldn’t be.
Despite my hope and wishes that my anorexia was in my past, life sometimes throws things at you when you least expect it. Fast forward a few years and I was now pregnant with my first child.
I was experiencing severe morning sickness and was unable to even keep down water. My BMI was low and I was taking ten to fifteen tablets daily to try and minimise my sickness. That voice which for so long had been dormant suddenly reared it’s ugly head again and I was faced with the dilemma of dealing with an eating disorder whilst pregnant.
I can’t even explain how frustrating the situation was. I was so incredibly angry with myself as I wanted to eat and be healthy for my baby. Every time I tried to eat, the voice would drown out my good reasoning and I was left feeling completely lost. I remember once trying to explain how I was feeling to a sister I knew and them telling me to not be selfish and think about my baby. I almost burst into tears and I wanted to say, “don’t you understand that’s all I am thinking about?”
Being pregnant with an eating disorder is one of the hardest experiences of my life. I was almost 32 weeks pregnant and no one could tell I was expecting. I found myself once again in treatment for an illness I thought was just a phase from my distant past.
My therapy course was designed to get me to think about my role as a mother but I felt woefully unequipped to deal with the situation. I gave birth to my daughter in February 2015. I attended therapy for almost a year after that. Imagine attending appointments in a eating disorders unit with a baby girl in your arms. At one point I had to change her nappy midway through an appointment and I couldn’t help but ask myself, what on earth am I doing here?
This experience left me with no doubt that we as a community do not have enough in place to support those with eating disorders.
As much as we might think eating disorders affect young people, the reality is that many live with the disorder for most of their adult life. How many of us can honestly say we are equipped to help a friend, a sister, a brother, a spouse through an eating disorder?
After my therapy my doctor told me never to fast during Ramadan again. Now, clearly knowing and understanding the significance of this month I was very reluctant to let the month pass by without even trying. This past Ramadan I got in touch with an Imam to ask whether it would be permissible for me to fast with my illness. He informed me that he didn’t know enough about eating disorders and didn’t understand the condition enough to give me an answer. If our doctors are unable to provide the nuanced support we need, and our imams do not understand the condition, how are we ever going to get through to the most vulnerable people in our communities?
As a mother now, I am more aware than ever of the impact anorexia has had on my life. Mental illnesses are not just a phase. Every single day I make the choice to lead a healthier lifestyle and every single day I have to follow through on that choice. My eating disorder has taught me that we each have a responsibility to our brothers and sisters. The Prophet said, “If anyone fulfills his brother’s needs, Allah will fulfill his needs; if one relieves a Muslim of his troubles, Allah will relieve his troubles on the Day of Resurrection.”
Alhamdulillah I am very pleased that in the last few years there has been an increase in the support available for Muslims.
In particular, I would like to highlight the excellent work my dear friend Maha Khan is doing with the Islam and Eating Disorders blog. This has reached hundreds of Muslims struggling with the illness and has been a lifeline to many. I ask every single one of us here today to make sincere dua for those struggling with eating disorders. May Allah SWT relieve their illness and grant them ease. If I could ask you to take away one thing from my talk today, it’s that eating disorders do not discriminate. If we make a conscious effort to find out more about the illness we can become a community that is active, that is engaged, a community that treats problems rather than brushing it under the carpet. I thank you for your time.