Charlotte Bevan, fierce advocate and activist, died at home January 13, 2014. A mother of teenagers, wife of a farmer, parent advocate for parents of eating disorder patients, major contributor to the Around the Dinner Table forum, writer of short information films, Expert Carer for the Eating Disorders team at the Maudsley and Breast Cancer patient.
Search This Blog
Wednesday, 27 June 2012
Advice to a mother on sending her daughter to college.straight out of an Eating Disorders Programme.
My dear friend
I have thought long and hard about this. You must understand that I am a parent advocate and have no clinical training and what I am about to say is peer-to-peer advice, based on observations of other families facing this dilemma.
I understand you wanting your child to resume a normal life and I understand your hopes and dreams for her. I know you have planned and saved and bargained and that you both probably find it too difficult to visualise a life other than the one you have dreamed of and talked about. I understand that you want to leave the eating disorder behind, that you are sick of it, you hate it and you want to stop its vile destructive behaviour cutting a swathe through the future you want for your child.
I think that you think that by giving her a new start, she may choose to leave her eating disorder behind, shut away in a keepsake box, tucked hidden and forgotten under her bed or at the back of your wardrobe. I understand that you are different, that your family is not my family, that your experiences are different from mine. I understand that your child is older, cleverer, more sensible, stronger, wiser than mine. I understand that you know your child and you believe in her, have faith in her and know that she can do this. Or you hope she can.
I also understand that you have been promising that she can go to college at the end of treatment. It has been the carrot you have been dangling, the thing you can talk together about, plan, discuss and feel good about. The spider web strand of commonality that still holds you together. I know you believe that, without the promise of going to college, your daughter would not have made such strides, got so much better, wanted to be well. I understand that you believe you have to stand by this promise, keep your side of the bargain, believe that she wants this more than she wants her eating disorder. You have to be purer than the driven snow in the face of the disordered, contorted logic, of the wheedling, pleading, negotiating. You feel you need to have the moral highground in the face of the eating disorder. You have to the model of perfection, the one that keeps the promises, the one that does as they say they will do, to set her an example that you hope she will follow.
And all I hear, as I hear you say this, is that I can hear the eating disorder making deals with your daughter, telling her she can eat and put on weight because, once she is away, she can lose it all again and there is nothing anyone can do to stop it. Because the eating disorder is always in your daughter's head. It doesn't have to wait for visiting hours, or for her to be awake, or finished eating or in a good mood. It can talk to her whenever it likes, cajoling and scheming, twisting the truth, turning white into black.
Sadly, coming home from hospital does not mean the eating disorder is "cured" or that your daughter has the skill set to deal with anxiety, depression or any other difficulties that may arise,without defaulting to restriction. Continuing to eat enough and letting go of the eating disorder takes a long time, a lot of hard work and a tremendous amount of love and patience from clinicians and carers. There is no quick fix to this part.
If it were me, I would not even be thinking about sending my daughter away to college for at least another year. She will need support, help and love for a long while after coming out of the treatment centre. Recovery from an eating disorder is all about learning a new way of life and dealing with stress and anxiety in an entirely different way. This cannot be done in 3 months in a treatment centre or three days at home. It takes months and months and years and years. It takes support and kindness and calm firmness. It takes love and forgiveness. It takes catching them when they fall and setting them back on their feet, with a plaster on their knees until the cut is healed.
It takes the tincture of time.
There is a thread on the Around the Dinner Table forum which might give you some idea of the length of time it takes for someone to recover from anorexia here. If you would care to join us on the forum, I suspect the majority of the advice you would be getting, especially from those with children of a similar age who have faced the "going away to college" dilemma would be much the same. I would love you to join and post so you can have advice from other parents who have faced the same situation and see where, when, what and how they have dealt with it.
You should also ask yourself this. Are you sending her away for yourself, as well? Are you fed up with it, angry at it, want to be done with it? Do you yearn for some peace and some space and just one minute of the day that is not about food or exercise or anxiety or distress? Do you really think that you are doing this for her good or is there just a tiny bit of self-care involved in there too? Do you want her to have the opportunities you never had? Do you want her to be the person you couldn't? Haven't you worked and saved and denied yourself to give your child that head-start that never came your way? And isn't there a tiny bit of you that hopes that the good, loving daughter you know is in there would never betray you, disrespect you or let you down by not eating? Are you hoping that the shock of not having you there will force her into making the right choices? Do you hope that she will just see that this whole, new, gloriously exciting world of college and forget all this nonsense about not eating? That she will fall headlong in love with life and boys and study? That a little bit of you wants to live vicariously through her and you want that all to be joy?
It is very difficult to let your child down and I don't know about you, but for me, letting go of my hopes and dreams for my daughter and her glorious, sunlit, trouble-free future (including Prince Harry on a white charger), was one of the toughest things I had to do.
It is very much your decision and I am hoping that you will get some more support from the forum or other parents of young adults who have been through similar things. Please do not feel you can't return for further support and advice or that there will be any kind of "I told you so" moments. It is a horrible illness and a lot of unnecessarily hard decisions have to be made and it is very lonely and isolating. I remember when I first joined the forum in November 2009, I thought that my family was different and we would be done with the whole thing in 6 months but then, hey, I have always been over-optimistic.
Subscribe to: Post Comments (Atom)
I wish you had told me this as I was wondering about college 90 minutes away, not to mention farther away. I wish all parents could read this and hear it. Bringing our daughter HOME from college for treatment was far, far worse than it would have been had we delayed college.ReplyDelete
I hear the same story so often that it has become expected: families asking what to do about college and then at the holidays or summer break realize that ED has dug in his talons again and realizing how much harder it will be to cope with now - with an older and more independent adult.
Hope is good, but it can blind us to what is reasonable and humane. If you're not sure, REALLY SURE, then expecting a miracle in the most stressful transition of a young person's life is risky business. This is not letting our child down or removing their hope - it is caring about them and giving them TRUE hope for a healthy future.
Thank you, Laura. I wish I could somehow distill this into a bottle of wine and send it to every parent thinking of sending their child to college.ReplyDelete
Wonderful post, Charlotte. I am going to refer to this whenever this topic comes up in the future. You've touched on so many points. I wish I had known this 21 years ago but that's the past and now we're here and so much more is known. I missed out on a lot of things myself by going to boarding school and then college with BN in the 1960's. College life (and boarding school life) are full of stressors and the person with the ED MUST have in place a solid set of skills to overcome that incredibly devious voice of the ED. Thank you for writing this. I hope it's okay to share, too.ReplyDelete
Feel free to use however you want, Jennifer.ReplyDelete
Believe me, I've been thinking about it... and thinking again... and again... and I am hoping that this September **will** be the right time to send my son away to Uni and that the ED won't re-emerge while he is there. If it does, then I will be just half an hour's drive away and will be down there in a flash. In fact I'll probably be lurking around at other times, too, just to make sure. At some point there are more reasons why it's a good idea to go and less why it's a bad idea. It's difficult to know when or if you've arrived at this stage, and only time will tell. We can't keep our son at home forever. At some point we have to trust that he is pretty much recovered and give him the chance to give Uni a go and prove to us and to himself that he's kicked ED into touch. But if he doesn't get the grades in August, then never mind. Another year is another 12 months towards full recovery. We've talked about it alot, all three of us, believe me. And the instant there's any hint of ED I won't hesitate to pull him out of Uni and he can have another go next year or whenever.ReplyDelete
Very eloquently written.ReplyDelete
Articulate as ever Charlotte on a subject that causes so much pain and stress.ReplyDelete
Although I realize I am something of an anomaly, I have to disagreeReplyDelete
I have had AN for 8 years now and developed it at 15 and was hospitalized for 3 months (though I would currently be classified as having AN in partial remission).
I took a year off for treatment after high school (age 18) and gained 25lbs to a healthy BMI of 20.5 — However, this did not stick and I was asked to leave the treatment program I had participated in for 7 months (though I continued with outpatient treatment).
After 5 months of this dismissal from the treatment program and about 3 weeks before I was ready to leave for university, I was in a desperate place — I had a BMI of 14.5 and was on a wait list for inpatient treatment with the same hospital. However, I desperately wanted to go to university and stop my weight loss (though at that point I didn’t have much interest in gaining weight).
I began to see a ED dietician, in addition to the ED-specialized psychiatrist and psychologist who had followed me for approximately 3 years. I entered first year university (though my team and parents did not have much hope in me finishing first year in such a horrible state) and found that I desperately wanted to stay.
In the first week of my classes I fell in love with university and decided I wanted to stay in this place that was devoted to learning and research — and that I would do anything to stay. I realized that I did not have the stamina or mental health to undertake a university degree. I realized that weight gain was the key to this — and in this way, I choice my mind over my body.
The next three years were filled with tears, severe panic attacks, asthma attacks, cutting and purging. During Frosh Week I learned that I had osteoporosis and had also developed re-feeding syndrome. . . However,I made my choice to stay at university (monitored by my medical team) and I will graduate next week with an honours degree in Physiology and Psychology (I am also top of my class)
I have started a PhD in psychiatry/neuro-imaging research supervised by a prestigious supervisor/psychiatrist at a top university in Canada. I have gained 27lbs since that dark time in first year.
I am not symptom free (purging, self-harm and over-exercise are still an issue) but my weight is in the healthy range and I can “pass” for normal. My dietician, psychiatrist and psychologist, who have been with me for these past 5 years are now helping to further my recovery. . .
I just wanted to remind everyone that all cases are individual. I have been in treatment three times and had the option to participate in treatment a fourth time. However, I wanted to try my hand in university — and by doing this I rediscovered my passion for learning, which enabled me to fight back against my AN and (with support) slowly recover.
Dear A:) I admire your courage and the things that you hace accomplished academically but your story is exatly why Charlotte wrote this article. You are helping to show Charlotte, why parents should not send their child to U while sick. I would not want my child to live with the suffering from an ED for years. What good would it do my child to be a brilliant PHD student while suffering with ED and self-harm symptoms?ReplyDelete
Correction to above post: I meant to say "you are helping Charlotte to show parents why they shouldn't send their child to U while sick,:ReplyDelete
I see your point -- I really do. However, I take mild offense at the assumptions in your comment. I will elaborate a bit on my situation and give some of my thoughts. Let me see if I can change your perspective a little. . .
1. Maudsley is not always the best option for a young adult. In my case, it was simply not an option for me (we had tried it previously when I was 17.
My mother has mental health issues and is an alcoholic -- this meant that her anxiety and alcohol fueled rage/irrationality did not combine well with caring for a child with an eating disorder.
In addition, my father became so afraid of losing me that he became physically abusive -- I had orange juice dumped on my head, I was pulled from bed by my ankle, hit across the face, etc. Maudsley turned us into people we were not and we had little advice from out FBT apart from -- "do what works for you." Also, it should be noted that NO ED child who is loyal and loves their parents desperately is going to reveal the "family secret" of alcoholism to a therapist they barely trust.
2. Getting out of the house (a toxic environment where things were becoming increasingly tense between myself and my parents) and to university was the best thing I could have done. I was able to appreciate the normal life that other individuals had and I CRAVED this. It awakened in me a desire for recovery that I would not have had, had I stayed at home.
"Life stops until you eat," works great with many individuals. However, the problem with this is that I think with those who have suffered for years, the eating disorder has BECOME our world. Treatment has become our world. For some of us, it helps to see and understand and appreciate what is waiting for us if we take steps toward recovery. This is what university and a normal social life did for me.
3. Yes, I had symptoms during my undergraduate period at university. However, from my readings on ATDT, I have observed that even with the best parental supervision and unified treatment team, a child will still have these symptoms. A parent can attempt to "close the gaps" that the ED may find, but to completely insulate your child from this is nearly impossible. . . What I am trying to say is that, I would have had symptoms at home as well.ReplyDelete
At some point, your child will need to learn to deal with the intense urges and emotions they have. They WILL make mistakes -- this is learning. To suggest otherwise -- to believe that by keeping a child home an extra year, etc. you can ensure they never experience any ED symptoms or discomfort -- is simply not fair to either you or your child.
To provide an example, I went home EACH weekend and I spoke with my parents (particularly my mom) on a daily basis. I was able to tell my parents about my self-harm symptoms and they were able to support me (either by phone or in person if I was home for the weekend) and help me to talk through the urges. My team was also able to help me with this.
4. I was being monitored by both my team (consisting of a RD, ED specialized psychiatrist and psychologist). I could phone my psychologist at any time and I emailed my RD weekly with my meal plan progress. I was home each weekend and spoke to my parents daily. In addition, upon starting school, I was eating upwards of 2200 calories/day which would eventually peak to 3200. I could NOT have done this on a restricted diet.
In addition, I gained weight STEADILY during first, second and third year. I am now weight restored to a BMI of approximately 19 (I am short/small boned) and would have entered treatment had I not been able to achieve lasting weight gain. In addition, I was wait-listed for inpatient treating while attending university -- I wanted a back-up in case things went badly. My plan for university was well thought and supported by my parents, myself and my team. Please do not be under the impression that I went away to university with no medical supervision or follow-up.
In summary, university allowed me to live life WHILE recovering. The concept of "life" wasn't a mythical creature that would appear upon recovery. When the "going got tough" with my ED, I pulled on my university friends and university life to remind myself WHY I was recovering. I don't feel that this would have been possible in a treatment environment. I NEEDED to see what I was missing and I NEEDED to experience it.
I don't regret for one moment, the choice I made. I am farther than I have ever come in recovery. I would NEVER encourage parents to send an actively ill child to university against medical advice. However, I would ask parents to have an open mind -- eating disorders are complex illnesses and all cases are different. To actively prescribe a "one year post treatment" probation period could be harmful to some patients.
Charlotte, this perspective is so helpful for those nearing that moment in time of sending our child with an ED off to further education. My heart hurts and to read your beautiful letter provides much needed insight. Thank you and as always, very succinct and touches the heart strings.ReplyDelete
A:Your response doesn't change my mind but it certainly gives me a greater appreciation for you and it really saddens me that your parents were not able to care for you.ReplyDelete
The thing is that nobody here, including Charlotte, is saying that Maudsley is the ONLY way to help a young adult. She is saying to parents - do NOT send your child to U while ill. The treatment at home could be CBT, DBT, ACT, etc It doesn't have to be Maudsley but there has to be a focus on getting well before embarking on such a stressful journey as college.
You said that our children around ATDT forum still struggle even with Maudsley/FBT. That is true for a number of our children, particularly those who have co-existing conditions. But, there are dozens of successful recovery stories of YA living healthy lives and free of the disorder. These are the parents who move on from the forum but are still staying in touch with us, through FEAST or coming back to tell us how they are doing. Then there are those of us who stay in the forum because we have teenagers at home who are living healthy lives far removed from the ED. We want to give hope to others that full recovery is possible.
I wanted to share this article with you. http://www.blog.drsarahravin.com/eating-disorders/got-hope/
Charlotte, you nailed it - AGAIN!ReplyDelete
A:), I can see what you are trying to point out, and that you had and still have a desire to live without the disorder which was a louder voice than the ED - and that your situation at home was very different from a lot of other homes. I admire you for continued dedication and strength and want you to know you are an extraordinary person! I imagine though, that if you were given a 'safe' house for an extra year or so before heading off, it may have shortened this road to recovery that you (and all sufferers) face.
Something I have tried to point out in the past and did not always get heard, is that patients can learn to 'manage their disorder' instead of get ahead of it. The major steps involved with complete recovery need to be completed, and cannot be skipped, no matter how determined a person is (and I believe complete weight restoration is number 1 and most important.)
My daughter will attend a University this summer, but she will still live at home. She quickly realized around a year ago how difficult it would be to not have our support (for much more than just her ED recovery.) Strangers are not always very welcoming, and that in itself is difficult for an 18 year old, let alone the self discipline it takes to study, avoid parties when necessary, take care of one's own laundry, groceries, preparation... let alone being in sole charge of decisions on what to eat and how much in the face of heightened anxiety in an already anxious person.