Two college seasons - one rant

The ED world is buzzing with the same chat that always goes on in August: parents and clinicians looking for referrals to eating disorder treatment for a student leaving for college. These emails, listing symptoms and medical state, break my heart. They often use the word "motivated" and "charming" as if patients need to be pleasing in order to garner a clinician's attention.

It all begs the question: Why would a student with an active eating disorder be going to college? Really - I'm serious. I don't understand why this is acceptable. This is a life-sucking, potentially disabling or lethal illness: an anosognosic condition that thrives on secrecy and freedom from monitoring.

I know the tremendous pressure on parents by social expectations, by the young person's insistence that everything will be all right and that this is all he or she "lives for." I know the guilt and disempowerment of being told by professional advisers that we must 'let go.' I also know parents just get tired, and our egos get involved in the accomplishments of our children.
But you know what? We're parents, and that is a lifelong position. We have a right and a responsibility to do what is right for our child according to our unique and loving judgement. No one can tell us (and no one will take responsibility later) whether college is safe or advisable.
I put my money where my mouth is on this one: my daughter relapsed slightly after her freshman year and we withdrew support for college until she was not just well but quite well. She did not like that. We did not like doing it. But I believe it was our job to do it, and her longterm health and recovery depended on it. When she was ready, she went back and thrived (and had a treatment team for maintenance).

I've dealt with two universities as a parent - neither were in a position to protect or support my daughter's mental health. They said they could and would, but that isn't realistic. Looking back I don't know why I entertained the idea that they could. This is not diabetes or a vision problem where the patient is motivated and able to reliably self-monitor. Schools are not parents.

No team of providers on or off campus is going to be able to provide the kind of accountability and monitoring and personal support that a parent provides and an eating disorder patient deserves. No one at the dorm is going to watch out for or call the parents of a student unless the situation is so far gone that irreparable damage is done. We can't expect it and we can't get angry that they don't do it.

If you are not 100% confident of your child's recovery, committed to staying in the picture more than your child and school may like, ready to visit frequently, and have an expert team in place and in communication then why is college more important? If you feel pressured, or exhausted, or trapped, keep this in mind:

During November break is when I get the most emails and calls - from families who now realize their hand-wringing worries were well-founded and a shaky recovery is now an derailing relapse.

Recovery - full recovery - first. School can wait.

Comments

  1. I understand your position on this and realize that there are young people who are clearly in the grips of an ED who should not go to college. However, it is not a bright line -- some of us are dealing with EDs where weight is normal, symptoms of binging and purging are still there but are very much improved, body image issues are there but "doesn't everyone have body image issues?" and on and on. And the treatment team believes that the young person needs some time and maturation and, frankly, some separation from parents. How is a parent to know what is best in such a situation. That is a rhetorical question -- there is no answer. Again, in many cases, there is a bright line -- underweight and still struggling with getting enough nutrition to function. But not all situations are so clear.

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  2. You are right about there being no bright line - this is clearly a case for parental wisdom and individual circumstances.

    Yet I would, myself, put the line very clearly on the side of deferring college when bingeing or purging are in the picture at all. To go further, I see eating disorder symptoms as only part of the picture of recovery - I'd set the line at emotional stability and true independence.

    College is not required. Recovery is.

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  3. My daughter started her freshman year in college while not yet fully recovered from restricting anorexia. It was a mistake. She relapsed and had to stop out from school partway through the year. Eventually, she recovered but the relapse delayed the process. And we later realized that battling an eating disorder is difficult enough without having to do it while at the same time adjusting to a new life in college. Taking part of freshman year off from school worked well for her. She's now back in college, she is expecting to graduate next year, and the few months of medical leave freshman year is not a big deal in her mind or in ours.
    To Anon 1 above I would ask: Is there any reliable evidence that
    "separation from parents" is an effective method of treating an eating disorder, or is that just a prejudice based on outdated, discredited ideas? Any studies that back that up? I know in our daughter's case, it was actually separation of our family from the original treatment team and replacement with a new team that used an evidence-based approach -- not our daughter's separation from parents -- that seemed to help bring about full recovery.
    Anon 2

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  4. Parents should be aware that disordered eating is very common among college students. It's something like 1:5 to 1:3 female college students have an ED or are in recovery from one. I was in a sorority and sadly it was the norm. Two of my sorority sisters wound up having to leave school to be hospitalized for AN and one for BN :-( The latter was my sophomore roommate and I came very close to relapsing myself. When all the girls around you are picking at salads with dressing on the side, it's hard to be the one chowing down on a burger.

    Living at home and enrolling part-time at a local college is IMHO a much better option for ED patients.

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  5. I would like to provide an alternative view...

    I got out of treatment in March 2008 and promptly lost 32lbs -- I was so afraid to go to school. . .

    I left for school at a BMI of 14.5 and my parents were terrified. My team was recommending inpatient but my therapist and I agreed that going back IP and then going to live at home was going to do little more than put me bak in the cycle that got me to that point.

    I did university. I finished first year with a 4.0 average and I gained 16lbs. I am not yet weight restored, however,I am VERY happy that I finished first year. I was able to make progress in my life and recovery simetaneously.

    This is obviously not for everyone. I was on an inpatient waiting list just in case I decided I needed more help and I travelled 2 hours home by train weekly to see my team/family -- but it did work.

    University gave me the motivation I needed to shake off my ED. . . I needed a new and stimulating environment and I realized learning was much more satisfying than my eating disorder.

    I agree with you Laura in most cases, but I dno't think your statment is an absolute.

    A:)

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  6. I went to college when I was not fully recovered.

    I ended up losing more weight, picking up new behaviors, and becoming triggered with all the girls. I had to withdraw before the semester.

    What were my parents thinking???

    The University Library had shelves and shelves of eating disorder, dieting and nursing books. I had access to the gym and the running track was always open.

    The University Cafteria was buffet style which strangely enough had no restrooms.

    They built a newer cafteria with restrooms in the building. But they have a camera and a security station right ouside the door!
    They also conviently moved the counseling center across the cafeteria.

    Right now, almost every other post on the LiveJournal pages are about girls getting ready to go to college with the intention of hiding this disorder.

    The new way of looking for a roomate with the same disorder is requesting one who is vegan.

    For the parents who want to send their child off to university:

    Go the university and sit on a bench at night; that's when the girls go running. I told the security officer I was an athlete and was never questioned again.

    Our meal plan charged the same for each meal. I could have gotten a pickle and water (to go) and my parents wouldn't have know.

    The parenting books are great but watch the movie: For the Love of Nancy on Youtube or read the book Wasted. They are about the first semester of college.

    A strange thing happens when you start to eat again; you get the most intense hunger pangs all the time.

    I think parents start to see their child eating again and think they are ready. I think this is when we are the most sickest.

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  7. "And the treatment team believes that the young person needs some time and maturation and, frankly, some separation from parents."

    I think that patients who are successfully treated with the FBT are probably not the patients who would benefit/need separation from their family to recover.

    I don't think that separation from parents is itself "an effective method of treating eating disorders" but I do believe that in some cases the home environment isn't the best place to recover. Personally, my home environment wasn't conducive to recovery, in part due to my parents but also the abject lack of resources in my extremely rural hometown.

    However, if a person is making significant strides towards health, I agree w/Laura's point-- why the hell would you risk that?!

    When I think about my career & academic goals, I have to concede that my recovery from my eating disorder is the single biggest determinant of my success or failures. Yeah, school is important-- but I can't do any of that well without recovering. [Not to mention the impact recovery has on the other areas of my life. Like, you know, the being alive part.]

    While in college I found a really good treatment team off campus and actually recovered there. I also had supportive friends and advisors. I was in a place where there was so much else going on it was easy for me to see what I was missing out on by being eating disordered.

    [The constant threat of being kicked outta school or off the team if I slipped kind of helped too, though I really hate the way counseling worked at my college...you pretty much couldn't ask for help with a psych problem without being asked to take a one year leave.]

    For me, as weird as this sounds, being surrounded by so many actively eating disordered people wasn't almost the reverse of triggering. So much of my ED'd mindset was predicated upon this weird egosyntonicity... I felt uniquely in control for being able to restrict, etc.

    Seeing it all over campus made me realize how incredibly common it was-- it took away the specialness/possessive part of the ED. Watching other bright young women throw their lives away in this disorder gave me an opportunity to step outside myself for a minute & understand my ED in a different light.

    It's still very sad that EDs are so prevalent, and I only know one friend from college who's fully recovered. I've watched a lot of others go through periods of relative health, enrolling in law/med/grad schools only to drop out with evasive FB status updates about treatment woes.

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  8. My daughter left school in December 2008 of her sophomore year. She had been accepted into the nursing program. We managed to get her to the end of that semester by going up on weekends and feeding her. By New Years eve she was medically fragile and we were fortunate enough to get her into a treatment facility for 60 days. She has been with us since early March, and will remain with us atleast for the next year. She made the decision (fully supported by us) to not return to school. She holds down job in a childrens clothing store and they have asked her to become an assistant manager. It is not a college degree...but at this point in time, it is all she can handle. recovery is first....college will always be there.

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  9. I went to college highly underweight and very much involved in my eating disorder.

    College was NOT good for me... on any level. I took on way too much (21 credit hours a semester) and flipped out when my eating disorder did not go away as I thought it would by getting out of the house.

    The change of atmosphere (10+ hours away from where I went to high school) did not free me from my eating disorder... it helped me become more entrenched in it. It did morph from anorexia to bulimia in college - I think do to the change from feeling deprived to living a life of excess, but that's just a theory, however, it did not go away.

    It got to the point where I was too weak and dehydrated from laxative abuse to pull myself out of bed to go to class on days on than exam days... which aided in me sinking further into the e.d. because my grades were not the perfect scores I had been used to thus far. Partially because I could not concentration, partly because I sometimes would have to leave during the exam - still experiencing the after effects of laxatives, and mainly because I could not physically get out of bed to go to class.

    I had instructors comment on how ill I was getting, but obviously no one called my parents.

    Then when I made the decision finally to go seek help after thinking I was going to die from a horridly high combo of laxatives and diet pills it did not work out well, because my parents were not there to see how sick I was. I continued...

    I wound up getting sexually assaulted - I honestly believe it would not have happened had I not been so altered from the eating disorder - that I would not have put myself into that position.

    Long story short, college nearly killed me, I would say 90% of my memories of college are eating disorder related... meaning bathrooms, buying smaller clothes, scales, weights, etc.

    help is going to have to happen, so I wholeheartedly agree, do it before college so as not to allow yourself or your child to get worse. Is delaying admittance really so terrible as to take a chance on your life instead?

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  10. What is your opinion on a recovering anorexic attending the local community college for three hours in the morning?

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  11. To Anonymous:

    I am not Collen but like I said above, college made my situation worse.

    3 hours at college on the surface seems safe.

    But the reality is: she is going to have to get dressed and deal with her clothes fitting tight.

    She is going to see others who are like her. Girls and boys who are skinnier.

    Usually in a 3 hour class, the professors here in our College (although not required) give us a break to buy a snack and a restroom break.

    Is she ready to buy a snack from the vending machine and eat it in front of strangers?
    P.S. The cool kids don't bring snacks :(


    Then it depends on what she is studying. Is the subject matter going to be triggering?

    ****
    If you send her and she is not ready, then she has to take a "medical leave of absence"

    That's what I did. It goes on her transcript and when she wants to enroll again, she will have to prove that she is medically stable enough to return.

    ***
    The truth is, that when you have this, It's really hard to concentrate and our thoughts are all over the place.

    If you could, check out her writing patterns. Does she space them out and are they all over the place? The way I am doing.


    **
    Kathy from the previous post mentioned a great way to help her daughter.

    **
    If you decide not to send her, you can still talk to the professor and do two things:

    Ask him/her to give you a copy of the syllabus. Request a list of the reading materials.

    Work with her for the next couple of months and do the assigments at home. (She will not get credit for the work.)

    Then you can enroll her in the Spring. She will be a little more ready because she did the work at home.

    **
    I did this. I showed up to the first day of class, got all the info. Then, I emailed the professor and explained that I was not ready to take the class this semester but would take it in the Spring.

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  12. I am a current college student struggling with an eating disorder. It started in high school, but I kept it a secret until my sophomore year of college. I began seeing a counselor, but my parents were too far away to know how it severe it had gotten. I have a scholarship that covers tuition, room, and board and any remaining costs I cover myself, so my parents hold no financial sway over me. But they have taken a hands-off approach which I have seen as a double-edged sword. My therapist convinced me to go to a few weeks of treatment before this semester begins (2, most definitely not enough, but it was all I would concede). Despite the insistence of my hospital and outpatient treatments teams that I needed much longer, my parents have allowed me to return to my solitary living situation at college. I don't know that living at home would be the greatest thing for me, but school (my final pre-med year, filled with classes and applications) is probably not the best for me either. School (and particularly my current apartment) are where I really solidified my eating disorder habits and I am finding it nearly impossible to continue my recovery after returning.
    I know that I would not willingly take time off, but in a way I wish that my parents would have taken charge and insisted that I return to treatment and delay school if needed, despite their lack of consequences if I disagreed. I'm too scared to tell them how serious it is and that I really need more support, but I'm also incredibly scared to face yet another year of school with this disorder...not to mention getting through med school interviews without letting it show...

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  13. Lisa,
    My heart breaks for you... I know how hard it will be to tell your parents you need more support than you're currently getting, but you need to do it. That means, though, actually listening if they tell you not to go back to school- when you're in a situation where you're not financially dependent on your parents at all, it can be very difficult for parents to make you do anything- stay at home, get treatment, etc. even though they may badly want to. In the end, you'll have to choose to do what they're asking you to do. I think for someone at your stage with an eating disorder the best decision is to let your parents make the decisions that are best for your health for a little while.
    My biggest piece of advice, though, is DO NOT START MEDICAL SCHOOL until the problem is 100% taken care of. I've seen several people develop eating disorders in medical school. The high stress levels tend to bring out whatever genetic tendencies you already have- whether towards depression, anxiety, substance abuse, eating disorders, etc.
    I went into medical school with some unresolved issues from my past (not eating related at all), and it's been a much more difficult path than it would have been otherwise.
    Maybe Laura Collins, who runs the blog, could put your parents in touch with parents who have done the Maudsley approach (parents in charge of refeeding) in your situation (already out of the nest, so to speak)...
    Feel free to email me at salukimed@gmail.com

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  14. I am, ALWAYS, happy to help caregivers learn about options, information, and connect with other parents. It would be an honor.

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  15. My daughter will be a senior in high school, so we are looking toward questions about college next year. We just had a one-day intensive program to introduce us to FBT and I have taken over her food, and her life is stopping until she gains 10 pounds to take her out of the danger zone.

    Our approach now is that she can look at schools up to a day's drive away from home (same restriction as her older sister), but must also have some possibilities within 1 hour. There is also a local branch of the state university in our town. We figure that she can apply wherever, but when the decision time comes (April 2010), we'll have a better picture of what we think she can handle.

    My biggest question is "what do you do about health insurance for her?" My family plan will cover my children up to age 22 as long as they are enrolled full-time in a course of higher education. Though we get precious little reimbursement for her therapist or nutritionist, at least her medical needs (AN related and not) are covered.

    Do you all just go without?

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  16. Good news! The laws on this recently changed - see the F.E.A.S.T. page on insurance and look for the link on the right saying:

    Michelle's Law protects college student insurance during medical leave

    http://feast-ed.org/insurancemoneyissues.html

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  17. So true, Laura. I re-posted this entry to my own blog.

    I could have saved myself a world of trouble, including 2 hospitalizations, if I had put myself and not school first. And yet I still managed to graduate EARLY! ED can really make you do insane things when it is in the driver's seat. Recovery first. You don't see people with cancer, doing chemo, or re-learning how to walk after an accident still trying to attend college while healing!

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