A Nutritional Lobotomy?

That is exactly what I felt I would need to undergo after our son discharged from inpatient treatment.  Our world turned upside down when our son became ill with an eating disorder.  The shock,  the anger, the disorientation, and of course, the guilt.  Did I do something to cause this to happen?  Could I have prevented this?

Our journey through treatment has had its ups and downs.  There have been setbacks, but there has been real growth for our entire family in many areas.  We have tried many different strategies and have received mostly really good advice.  Sometimes, though, things have been said that just didn’t make sense to me.   They seemed to defy the principle of common sense in my mind.  I am not a particularly rigid person.  I do not subscribe to the philosophy of one size fits all in the realm of eating disorder treatment or anything else.  Eating disorders are very complicated and throughout our journey we incorporated aspects of many treatment modalities, used a variety of strategies based on research past and present, and also used a very large dose of common sense.  All of this has been within the framework and guidance of our treatment providers. Continue reading A Nutritional Lobotomy?

When Advice Crosses the Line

First published on www.psychcentral.com.

https://psychcentral.com/lib/when-advice-crosses-the-line

hands-people-woman-meetingDuring the process of my son’s recovery from his eating disorder I have received advice from many places. More often than not this advice was helpful and appreciated. Many people have shared with me their tips and creative strategies for managing eating disorders in their homes and many of them I utilized in our own home. There was, of course, that “advice” from friends or family members that was really not very helpful at all. That generally wasn’t advice though. That was usually a very ill-informed statement or comment that would sometimes make me wonder whether it was intended to be helpful at all or who it was intended to help. It often appeared to be something that the “advice giver” just wanted to get off of their chest or said to reassure them that my situation wouldn’t happen in their home. That said, I can honestly say that most of the time the advice I have received was sound and well intended.

While I have not personally been the victim of advice that crosses the line, I have witnessed many examples of this and recently have seen a tremendous increase in its occurrence. Support groups are widely available now. I have been involved in support groups that meet locally on a monthly basis and have been involved in online support groups. I have noticed for quite some time that I see much more, what I would call, dictating treatment rather than support or opinion. I frequently see such statements as, “you should dump that ED treatment team”, “Your therapist is not in touch with the current research”, “where your dietitian is missing the boat is…”, “your child should be gaining two pounds per week”, “you should not consider therapy until at least 75 percent weight restored”, “your provider is not serving your child well”, etc.

I have seen parents told that their entire family should be observing the exercise/dietary restrictions that their child is prescribed. I have seen parents venting in support groups both online and in person about something that they were told in therapy that they found difficult to accept and I have seen group members tell that parent that they are absolutely correct and that the therapist doesn’t know what they are doing coupled with a recommendation to leave that provider.

These statements listed above are irresponsible and do not have a place in a support group. While I believe that the person making those statements is very well intended and has no motive other than to be helpful, I also believe that statements such as those above can be very harmful and make assumptions that the advice giver cannot and should not assume. Irresponsible does not have to mean malicious.  There is no malice intended with the statements above and yet, they are irresponsible.

Eating Disorders are very complicated because humans are very complicated. Because we are not machines, one size does not fit all. While one approach may work very well for one family, it may not work well for another. There are so many things to be considered. The latest research is very helpful, but not dogmatic and shouldn’t be presented as such. That very same research may be refuted several months from now or it may lead to the cure; no one knows. Many treatment modalities have been designed throughout the years and many more will come, I am sure. There have been successes and failures with them all because human beings are complex. The goal of the treatment team is to develop a treatment plan that is tailored to meet the individual needs of the patient. This will vary from person to person and should be modified along the way as needed.

There are many considerations that go into a treatment plan. Obviously, when there is a medical crisis such as malnutrition the first step is the medical stabilization of the patient which is most often done on an inpatient basis. There are usually two additional steps before moving to outpatient treatment which are Partial Hospitalization (PHP) and Intensive Outpatient (IOP). Once those are completed the patient is generally stabilized on an outpatient basis. This usually involves seeing a psychiatrist, therapist, and a dietitian. Sometimes family therapy, art therapy, music therapy or other modality is incorporated as well. These clinicians develop a plan of treatment for an individual with many things in mind. Considerations such as age, history, previous treatment successes and failures, family dynamics, cultural considerations, co-morbid conditions, medical conditions, environmental stressors, financial hardships, school, occupation, trauma history, and individual coping styles must be factored into the treatment plan. These things are not the same for everyone.

When someone is venting in a support group whether on-line or in person, the listener is hearing only the perspective of the person speaking. That person may be upset by something that happened in a particular appointment that day. We don’t always hear what we want to hear in therapy. It is hard. What the listener is not hearing is the point of view of the therapist, psychiatrist, or dietitian. The listener was not present to hear the entire conversation and the listener likely does not know the entire picture the way that the particular practitioner in question does. That practitioner knows the patient and the family in a way that the listener does not. There were very likely many things discussed in that therapy session that the listener is not privy to. There may be a very reasonable explanation as to why the practitioner gave the advice, medication, or weight gain guidelines that they did. That practitioner may be quite well versed on the latest research and not only not be missing the boat, but may see it, and the bigger picture, much more clearly than the advice giver. Practitioners are not infallible and they do make mistakes. That really isn’t the point though. The point is that the advice giver was not present to hear the entire conversation between the patient and the practitioner, does not know all of the intimate details of the family, and does not have the information that the practitioner does. Whether that practitioner is correct or incorrect, the advice giver cannot know this and statements such as described above are not responsible and can be very harmful.

Such statements are harmful for other reasons as well. New families coming for the first time to a support group are very vulnerable and frightened. They are often dealing with an eating disorder for the first time. They are all ears and often want to be lead and advised what to do. Being told that the latest research indicates that a therapist shouldn’t be involved until a certain percentage of weight is restored, or that a certain treatment modality is the latest and only one that should be considered could hinder that person from getting effective treatment. Because those methods worked for the advice givers loved one does not mean that they will work for the new group member. Telling someone venting about a frustration that their providers are wrong, not following the latest research, are not serving their loved one well, or should be abandoned may well ruin a treatment relationship that is actually beneficial to that patient and family. While there might be some frustration, the treatment provider might be a very good fit for that individual and family and could well be undermined by such comment. The advice giver does not have enough information to make a judgment, much less a recommendation as that. This is especially true regarding on-line support groups. Members often live in different states or even different countries and have never met each other. The advice giver cannot know the entire situation from all perspectives.

I am in no way suggesting that healthcare providers cannot be wrong or make mistakes. They are human like the rest of us and subject to error. As parents and loved ones we may be incredibly well read and up to date on the latest research and treatment modalities. We may have years and years of experience and “on the job” training that is invaluable. We may indeed be the most qualified to be the  leader in the treatment (or “team lead” as it is commonly referred to now) for our family and our loved one. This does not make us qualified to be the “team lead” for someone else’s family. It does not give us the qualifications to dictate treatment, make dogmatic statements about when to see a therapist, advise how much weight should be gained per week, tell someone that their provider is missing the point or isn’t up to date, or recommend that someone abandon their providers altogether. This kind of advice crosses the line and is not responsible, even if it is well intended.

Support groups are wonderful and I will always continue to recommend them. The members are there to be empathic, share their wealth of knowledge and resources, lend a helping hand and support each other through a very difficult and trying time. There is nothing wrong with sharing the latest research, talking about what has worked or not worked well for your family, share likes and dislikes about programs and treatment modalities, share concerns about your family, and showing concern for other families. There is nothing wrong with listening to someone’s frustration about their providers and even suggesting that they might consider a second opinion if they are unsure they are being well served. Beware though of the advice giver that is dictating treatment to you, making dogmatic statements, or telling you why your particular providers are incorrect or failing to serve you well. That advice giver does not have the necessary information about you or your individual treatment plan to be dispensing that kind of advice and that kind of advice does indeed cross the line.

Boundaries

Long before an eating disorder entered our lives good boundaries were important to me.  They were something that I observed as a child and this carried with me into adulthood.  I have tried to impart them to my children over the years and insisted that they be observed in our home.  Never was I so grateful for this than when our son became ill with an eating disorder.  These boundaries were very helpful to his recovery and to the recovery of the rest of us as well.

When I refer to boundaries, it is a bit of a broad term for me.  Boundaries are more than just rules of behavior.  That is important and certainly where things begin, but many things flow from setting a foundation of good boundaries.   Good boundaries set the stage in many areas of our lives.  They teach us how to control our behavior, they teach us appropriate communication skills, they teach us to love and respect others, they teach us to love and respect ourselves, to have healthy relationships, how to lead and how to take direction, conflict resolution, and humility.  They help us develop a strong sense of self.  Boundaries help us to properly read people and situations.  If we know what appropriate boundaries are we readily recognize when they are absent.  Parents with good boundaries set a very good example for their children. Continue reading Boundaries

Stepping Out of the Way of the Easter Bunny

I know I said that boundaries would be the subject of the next post.  I hope you allow me to sneak this Easter post in first as the holiday is getting close………

It is hard not to love that little Easter Bunny.  He is cute, cuddly, and so full of goodies.  He makes you think of Spring, and he makes you think chocolate.   It really makes one feel a bit anti-social not to love him.  When you are the parent of a child with an eating disorder, the Easter Bunny seems a bit sinister.  I find myself annoyed at his constant presence on my TV, radio, and computer.  I cannot go into a single store without seeing that rabbit!  The unchanging reality is that I will encounter that rabbit every year at approximately this time and so will my son.  Continue reading Stepping Out of the Way of the Easter Bunny

To Name It or Not To Name It

Having been in the Eating Disorder culture for several years now, I am always interested in what works and what doesn’t work for other families.  There are so many treatment modalities and so many families have developed helpful and creative ways of managing the eating disorders within their homes.  It is clear to me that one size does not fit all and that it is often a process of trial and error to find what works best for both your child and your family.   It is with this preface that I begin talking about the topic for this post:  naming an eating disorder.  Continue reading To Name It or Not To Name It

Are the Rest of Us Restricted Too??

Recently, I came to the realization that I need to exercise and start taking care of my own body.  The truth is that this realization should have come a long time ago, and probably did, but was ignored.  The “why” it was ignored is significant and points out how much this miserable affliction has held our entire family hostage, but none more so than mom and dad, the primary caregivers or carers.  It is not the fault of our son and it is not our fault either, it is an unintended consequence of our concern and fear. I am quite sure that many of my readers can relate.

It was at a visit to my doctor that I was advised to get back to exercising.  Prior to my son’s illness I had loved walking my dogs and biking. At the word exercise my heart sank.  Exercise?!! Seriously… in my house?  There was no way.  It would totally trigger my son who over exercised to the degree that it nearly killed him.  It was simply not possible I told myself.  Continue reading Are the Rest of Us Restricted Too??

Are You Listening……..Really?

Do you listen to understand or do you listen to respond?  That is a question that I recently asked myself after some disturbing experiences involving my children.  No, it wasn’t the children, in this case, that caused my disappointment.  It was the experience that I had with their healthcare providers.

I have written on my blog about the difficulties that I had getting a diagnosis of an eating disorder for my son, who nearly died of the illness.  At the same time, my teenage daughter was virtually accused of having an eating disorder when she presented with strange symptoms that included weight loss. She had an autoimmune disease, not an eating disorder.  I remembered feeling invisible and, frankly, stupid because I didn’t feel that anything I/we said was being seriously considered.  I didn’t feel understood. Continue reading Are You Listening……..Really?

I Refuse to Debate with You, Mr. Eating Disorder

One of the things that I found through my journey as a mother of a child with an eating disorder is that I don’t always have to understand.  In fact, I don’t

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understand most of the time.  That lack of understanding doesn’t make me unqualified to help him though.  Because I don’t have an eating disorder, I cannot understand what drives my son, who does have an eating disorder, to think and behave as he does.  Even so, I can be helpful.  Continue reading I Refuse to Debate with You, Mr. Eating Disorder

When Mom and Dad Disagree

I don’t know about you, but I sure wish I had the wisdom and experience I have now about 20 years ago!  I so often realize what a blessing hindsight would have been if it had been foresight.  No where does that statement ring truer than it does in relation to our son’s eating disorder.

Eating disorders affect the entire family.  They put stress on the person suffering with the symptoms, on siblings, close friends, and certainly on parents.  Marriages are often put to the test as the parents struggle to determine the best

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way of helping their child.  Whether or not to force treatment can be a very tough decision and one that often causes disagreement between the parents.  Eating disorders are often insidious and by the time everyone recognizes them for what they are, things are often fairly far advanced.  There can be many reasons for this.  In my family it was because there was not a “typical” presentation.  The symptoms of the actual eating disorder started several years before the serious weight loss began.  The roots had a chance to get in very deep before we all recognized the seriousness of it.  Denial sometimes plays a role as well.  Our son was very good at hiding what he was doing and we were equally good at trying not to see it. Continue reading When Mom and Dad Disagree

Collateral Damage

There was a time when I would have said that an eating disorder affected primarily the person with the actual eating disorder.  I was not ignorant of the fact that families and friends were sure to be impacted, but I truly underestimated how much so.  As a mom, I have to say that I did not anticipate the impact that my son’s  eating disorder would have on his brothers and sisters.  I wish I had had hindsight as foresight in this instance. Continue reading Collateral Damage