Not too Sick, Not too Well: Treatment Barrier

We recently met with a client who had just completed treatment at an outpatient eating disorder recovery program.  We asked her how it went and she described being “traumatized”.  When asked why, she said she felt like she was punished for having symptoms of her eating disorder while in treatment.  Instead of her care team seeing that her ability to share about her symptoms indicated that she was struggling and needed more support and strategies to overcome her eating disorder, she was told to simply stop having symptoms and that if she continued to do so, they would have to discharge her from the program.  As a result, instead of receiving supportive strategies for symptom interruption, she was put in a position where she had to withhold information about her illness from her care team in order to continue receiving eating disorder treatment.  

Unfortunately this is not a one off story. 

With over a decade of time spent working in eating disorder recovery, we hear many of these stories each week.

Such as:

• A child in inpatient hospital care who disclosed about self harm and as a result got discharged from the inpatient eating disorder recovery program.

• A teen who continued to relapse after returning home from inpatient hospital care and so was labeled as “treatment resistant” and told to learn to live with her eating disorder and work on not getting more sick,  instead of continuing to try and get well.  

We have a really hard time accepting this.  

Imagine this happening for any other illness: 

• What if you had a cavity, and instead of the dentist filling it for you, you were told to first go home and modify your diet and learn to brush your teeth better before you would get treated? 

• What if you are a smoker and got bronchitis, and when you went to the doctor you were told to quit smoking before receiving a prescription for antibiotics and that if you ever smoked again you would not be able to receive medical care? 

I know these examples sound silly and perhaps dramatic, but this is what is happening every day for individuals with eating disorders seeking support.  

• They are told to regain a certain amount of weight on their own before getting treated.  

• They are getting discharged from care when disclosing about self harm. 

• They are getting discharged from care when disclosing about engaging in the very symptoms of the illness they are seeking care for (such as binge eating or purging or using laxatives or restricting their food or hiding food).  

• They are having to lie about their illness and what symptoms are or aren’t happening still in order to remain in care instead of getting the support needed for the symptoms they are struggling with.  

• They are being told they are either too well to receive care, or not the correct weight to receive care (even though weight doesn’t indicate severity of the illness), or that they are too sick/ too high risk to receive care.   

At The Holistic ED Recovery Center we do not subscribe to this.  

• We know that you cannot simply turn your eating disorder symptoms off.  If you could, you wouldn’t have an eating disorder.  

• We know that attempting to refeed or weight restore to a certain degree on your own is one of the most difficult things someone could ask you to do. 

• We know that self harm is a concurrent behavior with many eating disorders and that the ability to share about it to your care team and/ or loved ones indicates a desire for support in stopping the behavior and/ or a desire for your hurt to be seen and supported.  

• We know that eating disorder recovery is not linear.  You do not simply get incrementally more well each day and engage in less and less symptoms each day.  It is up and down, there is ebb and flow and it is certainly not black and white.  

• We know that weight does not indicate health or lack thereof, in and of itself.  (Read more about non- weight indicators of health here).  

• We know that eating disorders live in secret and that sharing about the symptoms you are engaging in (such as binge eating, purging, restricting, over exercising, or hiding food) brings it into the light and allows space to challenge the eating disorder.  If you did not have some desire to be well, you would not share what you feel most shameful about and seek support for it.  This should be celebrated and supported, not punished. 

We believe there is a level of nuance needed in eating disorder recovery.  Nothing in life is black or white and this is no exception.  There is a gray area between knowing you need to stop engaging in symptoms to be well, and supporting your journey towards that goal.  There is a way to create trust, care and openness, without making space for the eating disorder and its symptoms.  There is room to be both firm and kind. 

We know this because we have both been there.  We have been the ones being treated for eating disorders, feeling ashamed of our symptoms, feeling worse off for sharing, and feeling like we were not getting the support we needed when we needed it.  

This is why we created The Holistic ED Recovery Center, and believe deeply in personalized and holistic care for eating disorder recovery. A space to be supported in real time when and how you need it (text, email or call us anytime- truly!), a space to receive a customized treatment plan fully personalized to your needs (family life, health, recovery goals, time), and a space where you can know 100% that you will never get released from care for having the illness that you are seeking support for.  THAT is just right.