During 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.