“Step one of many” – Ayisha’s story

When I was in hospital, I was the only hijab-wearing, Pakistani Muslim.

I stood out amongst the other stunning young girls who were battling through one of the most distressing journeys imaginable. I went in with little hope to form connections, and left with some of the most healthy, positive connections I could have imagined. While I will not name any specific names, the girls all know who they are, and while I struggle to connect or interact with them much I will forever be inspired by their strength and resilience to carry on.

I am so grateful for the many professionals and support workers all of whom were nothing but kind, understanding, courageous, considerate and did so much more for me than I could have ever considered doing for others. They inspired me to try to extend that support and help, and to be someone who says those difficult things to initiate insightful conversation.

Now, as I mentioned previously, I have no complaints about the care I received and am not sat here shaking my head at the incomparably professional and skilled staff members who helped me during the most challenging time of my life. There were however some problems, that I have decided to turn into lessons to inspire my need to speak up, connect with and raise awareness for ethnic minority groups, or even maybe men/other gendered individuals with eating disorders.

I still remember the well-meaning professional who told me I did not need to reach X BMI which was considered the healthy average BMI for everyone else because I am Asian, and apparently Asians have lower BMIs. That seemed to make a lot of sense to me at the time.

However, what that also told me was that an eating disorder should be able to tell someone’s nationality or cultural background, and that health is not a goal unless you are a white woman – so as an Asian, perhaps you should take up smaller amounts of space in general. Also, do not expect full recovery because you are still ‘meant’ to be smaller. This comment was quite distressing for me because it made me feel like I was just there to be chewed up by a very intense treatment process – and then spat out into the big, brash world in a new, very different body as soon as possible unlike everyone else. Did this mean that I was not worthy of treatment?

For most of my life, I have experienced crippling menstrual struggles. This never changed or stopped. Other people tell me that their menstrual cycle was affected, or stopped…however, mine has worsened over years and months, and time. When I lived abroad, and tried to seek support or help I was turned away with ‘we only cater to those worse than you because they do not get a period.’ So apparently to be deemed worthy of treatment, I had to cease menstruation. Otherwise, I was ‘not unwell enough’ to be helped. It was not something that completely floored me and made me despise my own body and menstrual cycle. Thankfully, not all professionals here have focused much on my menstrual cycle, though after many, many years professionals are realising my whole cycle is as normal as the sun being out on a cloudy night, and something is being done about this.

My parents, who I fondly quite often refer to as my Parental Unit are only now telling me that a well-meaning Indian professional decided to tell them, while I was in hospital that if they got me married, I would magically recover! Did anyone else know that marriage is apparently an incredible, wonderful, magical, and miraculous cure for eating disorders? Forget your ECBT and EMDR and hospitalisation… instead get yourself hitched and voila! You will be CURED…

Well: I have been married for around two years now. Married I am, but ‘cured’ I am not. I was initially very reluctant to even consider marriage or a long-term commitment due to a complete inability to trust humans, connect with them etc. (Only recently have I come to find that most of my human centred struggles come from indications of Autism.) I have a loving, caring, and considerate partner who tried to try to listen to and understand what my eating disorder was, where it came from and what helped me.I do still hate that he must also live with anorexia as a third person in our relationship.

Marriage is an extremely profound change for many, and for us both it came with the additional messiness of an eating disorder. Yes, I found many symbolic ways for making our wedding memorable, but I am always going to be slightly ashamed of the fact that I spent much of our time inwardly zoned out thinking about my weight, food, shape, size etc. We have been married for two whole years, and not once have we been to a restaurant to share a meal together.

That well-meaning nurse placed a lot of hope in my troubled parental unit, meaning they in turn had a lot of hope their son in law would wave some kind of magic wand and cure me. I have had an eating disorder since I was four. Magic wands do not exist, and unfortunately my loving husband does not have all-healing properties or powers to cure me. Where any other couple would probably be looking forward to starting a family…we are instead looking forward to sharing a meal together. This, for me, is step one of hopefully many, many more.

-Contributed by Ayisha

If you've been affected by any of the issues raised in this story, or are concerned for yourself or a loved one, you can find support and guidance on the help pages of our website.