Jenny Allen’s life was shattered when her talented, vivacious daughter died six years ago.
Stephanie was just 22. Anorexia had troubled her since adolescence, unbeknown to her devoted mum for all but the last two years of her life.
Jenny is now a trustee and chair of SYEDA, the South Yorkshire Eating Disorders Association, which fights to secure all sufferers the early diagnosis and help they need if they are to beat their internal battle - and support their families.
In Eating Disorders Awareness Week, Jenny is opening up her heart and her grief in a bid to further the charity’s cause.
Q. Does a day ever pass when you don’t think of Stephanie and question why she developed anorexia?
A. No, I think about Stephanie every day. I don’t question why she developed anorexia, but why she relapsed. Why was she one of the 20 per cent who tragically lose their lives to this awful illness?
Q. It must feel like such a tragic waste...
A. Definitely, I mourn her loss, her ambitions and dreams. She was vivacious, kind, clever, a loyal and trustworthy friend. She got a 1st class honours degree in Biology and planned to do environmental and conservation work and work with disadvantaged people. We all miss her so much.
Q. What do you think of eating disorders? Do they make you angry, sad, or perplexed?
A. Perplexed, and to some extent sad. An eating disorder takes over a person’s life, it is not a “choice” any more than a physical illness is. It is a complex mental illness which is not easily understood. It is like a cancer of the mind, with thoughts continually growing and becoming more entrenched.
Q. Is there still public misunderstanding?
A. Most definitely - there are many misconceptions. Many people appear perfectly normal, yet have an eating disorder. It often affects people who seem very bright, intelligent and forceful, but who are hiding deep insecurities.
Q. Do you think there will ever be a cure? Is enough money and effort is put into finding one?
A. I hope so. It is difficult because every mind is unique, so it’s not easy to find one cure. Much more research is needed but not many people work in the field.
Q. When had Stephanie’s battle with an eating disorder begun and when did you become aware of it?
A. Christmas 2005, she came home from university looking very thin. Our first reaction was that her dieting had gone far enough and it was now time to stop. I knew nothing about eating disorders. She had always enjoyed food, so I wasn’t that worried. Our son then told us that at university he and her friends had been so worried about her not eating and obsessively over-exercising, the had persuaded her to seek help. On her worst days, she was surviving on half an apple.
Q. What do you think triggered it?
A. Difficult to say. The stress of her final year? I don’t think so, though she pushed herself to perfection and perfectionism is one of the aspects of an eating disorder. She did say that her problem went back a long time. Was it linked to insecurity during her teenage years? She sometimes said she wasn’t as clever as other people, or as good-looking. But then, she had gained more confidence and was blossoming. She appeared happier, in control and grown up.
Q. Were you worried when, after getting her degree, Stephanie announced she wanted to go travelling?
A. Yes, Stephanie had always wanted to travel. But having developed anorexia, she needed time to recover. Her plans were put back twice, but after moving home and with help from SYEDA she began eating better, put on weight and had fewer panic attacks. We still suggested she put the trip off, but once she was declared fit enough to go, there was no stopping her.
Q. She died mid way through her six-month journey to see the world. Do you wish you had stopped her going?
A. We wish she hadn’t gone, that she had conquered her illness first. I didn’t believe she had fully beaten her anorexia, but I did think she was recovering. I will always bear the guilt that I did not fully read the signs of her relapse while she was travelling and insist she came home.
Q. Stephanie wrote a travel blog while she was away. The last picture you have is of her happily dancing on the sand in Santa Cruz. How do you feel when you look at that picture?
A. Happy for her, because she was very happy. In her journal she said: “I don’t think I have ever been to a more perfect beach before”. I am so pleased that she had that experience, and met some wonderful people. I smile when I look at that picture, but it also makes me cry, because she is not here.
Q. What has helped you to cope with her loss?
A. Our faith and the support of so many people. I keep busy, doing things I think Stephanie might have done herself. I understand more about eating disorders now and am determined there should be better facilities in Sheffield for the people they affect. I wrote to the NHS about how we had been let down by the system and some improvements were made.
I now work at SYEDA as a trustee to ensure people with eating disorders get help immediately and that their families and friends are supported.
Stephanie was given information about SYEDA while a patient at Sheffield Eating Disorders Service. We attended the monthly sufferers’ and carers’ support groups. I learnt about the illness and how to support Stephanie. Their Treading on Eggshells Course taught me how to encourage her. Only she could decide to get better, but she could not do it alone.
The fact that I was taking her illness seriously helped her. I found out how many people this illness affects and no longer felt alone, drowning in what seemed an impossible situation.
Q. How did it help you after her death?
A. SYEDA were very sympathetic and supportive, giving me guidance on how to question medical decisions which had been made regarding Stephanie’s treatment.
I participated in a Decision Making Conference about NHS care for eating disorders in Sheffield and explained how our family had been affected and how the situation could be improved for future sufferers and carers.
Q. If someone is reading this article and recognises themselves, or their child, what would you say to them to help?
A. If you think that there is a problem, there probably is. Do not be fobbed off. Insist on immediate medical help.
Someone does not have to be extremely thin or obese to have an eating disorder. Be aware of changes in a loved one’s personality or habits. Obsessive exercising, missing meals, over-eating yet remaining at a constant weight are all clues that there could be a problem.
Talk to them - not about food, but about any other anxieties they may have. Do everything you can to get help EARLY. Research has shown that the earlier someone gets treatment, the more likely they are to recover.
Get in touch with SYEDA at www.syeda.org.uk or on 0114 272 8822. . You will be seen quickly and in confidence. We help people with mild to moderate eating disorders before the need for more serious intervention arises.