The tale of two mothers and the illness that starves children and families
“With mental health I’m so worried for my daughter’s future … I feel we are all drowning in rough seas in the dark with no idea where land is or which way to go for a life jacket.”
– Mother of young adult woman with anorexia
by June Alexander
Mothers Ann and Judy, from Australia and Israel, have never met, but their stories are shockingly and amazingly alike. Each has a daughter who developed anorexia nervosa. Each has felt lost, alone, powerless and deeply fearful of what the future may hold for their family and their child.
They share their stories here, to raise awareness and emphasize the need for more education, more access to specialized eating disorder services and more support for families and people with eating disorders. Globally.
Mental health is not my field of expertise. My daughter is in her early 20s and has been struggling with an eating disorder since her early teens. All I can do is love her and support as best as I can. I try to talk to her as honestly as possible and encourage her to keep on trying. It is exhausting and I’m very afraid for her.
My husband and I only have ourselves to support each other day to day and we talk about how to help our daughter all the time. All we can fall back on is our own common sense and the crumbs of knowledge we have gleaned as we’ve come along this journey.
“Just because our daughter is an adult in age doesn’t mean she is in control of her life.”
Left in the dark
Anyone who is unwell needs an advocate to speak on their behalf and to ensure that there is appropriate follow up. If our child had a physical injury we would be allowed to know what the injury is and what the treatment regime would be. With a mental illness the shroud of secrecy is drawn around and those who love her most are kept in the dark.
Just because our child is not under 16 or 18 doesn’t mean we no longer feel responsible for her well-being. Information (about eating disorders) for parents/carers should be available at any point of contact with the medical or psychiatric world. Parents especially need to know where to go for support as well as information.
Parents need a lot of help
Often the person with the eating disorder is very resistant to getting help so the parents need a lot of help. We were offered nothing. We were told by the GP not to make a big deal of things. Then the psychologist shut us out because our child was 16 but we were given no information or pointers to more support. Anorexia is such a serious illness you would think the medical profession would be better informed and enlist all supporters in the treatment and recovery process.
Only years after my daughter’s diagnosis, through a chance meeting at a rural event with June Alexander, have I found that helpful links (see below) are available online. So much information! Why can’t parents be put in touch with something like this at the time of diagnosis instead of being left in the dark?
“Are you ashamed of me?”
I read the article by Laura Collins Lyster-Mensh about parents being blamed and identify strongly with this. I definitely felt when my daughter was first admitted to hospital that our family was under the spotlight as to how our daughter came to have anorexia. When she and I went for a look at the eating disorder unit, my daughter asked if I was ashamed of her. I said that as far as I was concerned she had an illness, like diabetes and we had to get help to get her better. I had no idea what a monumentally complex illness we were dealing with. Later that night she asked me why her? My response was that she must have got into the wrong queue. Some people get diabetes, some get cystic fibrosis, some get Down Syndrome and she got anorexia. It was difficult for all of us to attend a family session and be made to feel that at least some of our daughter’s suffering was due to our behavior.
I don’t get it but I try
There is absolutely no support in the rural area where we live and we have often been at our wits’ end with trying to support our daughter and look after our 17 year old son who has had to deal with the trauma of his sister attempting suicide, and the impact this has had on all of us. And of course there has been the fear and hopelessness of the position we have been in.
As I say, we are trying to get some mental rest right now before the next episode. I have a bag partially packed so I can leave for the city at short notice. I still don’t get ”ït:” depression, anxiety, anorexia, but I try.
The joy I get from my family is immense and being a mother is the best thing I could ever do. To have my daughter tell me and text me about how much she loves me and appreciates my support is absolute gold after the difficult times we’ve had. The other thing I’ve learnt to focus on is compassion. My daughter has not chosen this path and it is awful for her. I dearly want to see her be able to live a full life rather than existing on the edge of things.
What we need
What help does our daughter need? She is struggling with anorexia; it is still strong despite her getting to a healthier weight. She needs a good psychiatrist who can help her with her anorexia, anxiety and depression with the back-up of a hospital that she trusts. She appears to be getting good support from a psychologist and group sessions provide some support. I think a mentor who understands eating disorders might be good for her to touch base with regularly to talk about how to stay on track with her meal plans when life gets stressful.
What support do my husband and I need? We have strong family support from our other children and our own extended family as well as a good network of friends. None of us know much about mental illnesses, but they let us talk and offer tea and sympathy. This support is invaluable but we also need more opportunity to learn from a community of peers: other people who have or are going through these issues. We need to continually learn about mental health and what support is out there for our daughter and for our family. One of the most difficult things I have had to deal with is the sense of disempowerment and marginalization from this experience. I like to identify a problem, examine potential solutions, make a plan and work towards overcoming the problem. And with mental health I’m so worried for my daughter’s future, but can get no help to sort through the issues. I feel like we are all drowning in rough seas in the dark with no idea where land is or which way to go for a life jacket.
I have read Ann’s story with both a heavy heart and with a sense of amazement that we live more than 8500 miles apart, across several oceans, and yet there are glaring similarities both in our stories as mothers and in the illness shared by our daughters.
First and foremost, I feel the pain, frustration, loneliness, despair, fear, anguish, and suffering of every parent who has limited or no access to specialized care for eating disorders.
“It is appalling that in the year 2018, there are still parents out there who cannot find accessible treatment.”
It saddens me to hear of parents who travel substantial distances with their child to get treatment, at great cost, whether financial, or at the expense of time spent with their other family members.
Access to treatment is a basic right
Accessible treatment is a basic right. So is specialized care. And yet, so many people are not granted either when their child is diagnosed with an eating disorder. It is an indescribably horrible feeling as a parent to know that there is treatment available that may be able to heal your child, but you don’t have access to it. It makes parents feel helpless, feeble, and impotent.
While some parents are fortunate to have a treatment team that offers them support and education, other parents are left to deal with their child’s eating disorder on their own, in the dark, without guidance. These parents who are unsupported feel utterly and totally alone, and extremely scared. I am speaking from experience.
My maternal instinct was screaming
When our daughter first developed anorexia nervosa, my husband and I had nowhere to turn. It became clear to us very quickly that professional help was meant for the patient alone; no one helped us navigate our daughter’s illness. When we were addressed, it was to cast aspersions on our parenting abilities. We were not only unsupported, we were disparaged, marginalized, and denigrated. All the while, our daughter was getting worse through the treatment that she was receiving, and all the while we were getting more and more frantic. She was gaining weight, but her mental state was declining and no one seemed the least bit concerned about this. “She’s gaining weight, what more do you want?” we were told. My maternal instinct was screaming that this treatment was literally killing her. It almost did.
I knew that as parents, we had to take matters into our own hands, so I turned to the internet for information. I spent hours looking for resources that could help me better understand my daughter’s eating disorder and offer me tools to help her get better. Some extremely helpful websites were the National Eating Disorders Organization (their parent toolkit is wonderful!), the Butterfly Foundation, and F.E.A.S.T. The Academy for Eating Disorders (AED) also has a great section for patients and carers with lots of helpful information.
(002)The most invaluable support that I received was from F.E.A.S.T’s Around the Dinner Table Forum. I was able to freely ask any and all questions that I had regarding my daughter’s eating disorder and get immediate answers from other parents who have been in the same situation. These parents were wise and insightful, and gave practical answers peppered with messages of support that were literally my lifeline. I felt like the parents on the forum really understood what I was going through; and as such, their support was that much more meaningful to me.
Becoming an advocate for change
At a certain point during my journey as the mother of a daughter with an eating disorder, I decided that it was time for me to reach out and help others. I became involved in F.E.A.S.T, because I wanted to give back to the organization that was there for me during my darkest times. I joined the Academy for Eating Disorders (AED) and I am currently co-chairing their Patient-Carer Committee, which integrates the lived experience of patients and caregivers into the programs and activities of the organization.
One of the Patient-Carer Committee’s most important projects is promoting World Eating Disorder Healthcare Rights – see Purple_World_ED_Rights_Flyer_04.03.2017 (002). This document was created in part as the result of my own deep-seated frustration at how deprived we were of the most basic rights when our daughter was initially in treatment for her eating disorder. When I read stories like Ann’s, I realize how important it is to disseminate these rights and to make sure that they are implemented into clinical practice across the globe as quickly as possible.
The truth about families – they do not cause eating disorders
What strikes me most about Ann’s story, and so many other similar narratives that I hear from other parents, is how intuitive she is as a parent, and how sensitive she is to her daughter. Even without professional support, Ann is doing many of the rights things to help her daughter beat her eating disorder.
For the most part, parents are their child’s greatest asset in recovery, and this is why I am so happy that we have the Nine Truths, which talk about families not being to blame. Let’s include families in treatment whenever possible. I only wish that I had been given the opportunity to participate in my daughter’s treatment when she was first diagnosed. I truly believe that the outcome would have been different, positively so.
I am working toward a day when everyone has access to specialized care, when patients and their families are respected, supported, and treated through methods supported by scientific evidence, and when parents are educated and valued as partners in treatment.
Ann Gardiner is the mother of 5, including a daughter with anorexia nervosa. She has a degree in Agricultural Science and after working as a farm advisor is now a dairy farmer with her husband on a property that is a three-hour drive from the closest capital city. Ann is involved on steering committees and has been on the boards of various dairy industry organisations. She is also involved at local level on the local Community Planning Group and as treasurer at the local football/netball club. Ann believes that strong community connections are vital for an individual’s well-being and makes everyone better off. Ann can be contacted on email@example.com
Judy Krasna is the mom of four, including a daughter with an eating disorder. She is a professional event planner. She is also an eating disorders parent advocate in Israel, where she lives. Judy is the co-chair of the AED’s Patient/Carer Committee and the founder of FEAST’s Israel Task Force. In addition to offering peer support to fellow parents, Judy writes a blog on Times of Israel that is mostly centered on eating disorder related issues. She can be reached at firstname.lastname@example.org