Recovered does not mean ‘Eating Disorder Expert’

I am seeing a trend in the area that goes like this: “I have recovered from an eating disorder, therefore I am an eating disorder expert.”   How scary is that?  That’s like saying- I had brain surgery therefore I am an expert in brain surgery, or I had cancer therefore I am an expert in cancer, or I lost weight therefore I am a weight loss specialist (that one’s all too common) or I flew on an airplane therefore I know how to fly one.  Of course when we look at it that way, it’s ridiculous!  When I think about the fact that eating disorders are the deadliest mental illness and that “the risk of death is three times higher than in depression, schizophrenia, or alcoholism and 12 times higher than in the general population”¹ it really scares me.  It scares me for all those individuals seeking help who end up in offices or gyms or who knows where else that don’t get the help they need.  You might not think it’s a big deal, but it is and here’s why.

1.     Having an experience does not make you an expert. 

Think of it like this- I had my wisdom teeth taken out about 10 years ago.  According to the logic that having an experience makes you an expert- then I am an expert in wisdom teeth removal.  That’s a scary thought.  I am certainly no expert, and you would not want me attempting to take your wisdom teeth out.  BUT what I can do is share my experience with you and let you know what I found really helpful and what wasn’t.  I can refer you to my amazing oral surgeon who can professionally take your wisdom teeth out, but that’s about it.  Your experience having your wisdom teeth taken out will be unique to you.  It won’t be the same as mine.  You might have similar experiences or it might be completely different.  If I only give you my point of view then it could be completely wrong and unhelpful.   At the end of the day having an experience does not make you an expert in that area.

2.     Treatment should be about the client.

Sharing about recovery in the treatment of an eating disorder can be a valuable and helpful tool when used wisely.  However, to do so it is imperative that this information is shared in a timely and recovery oriented manner.  Sharing should serve a purpose to your recovery process.  As the client, treatment should be about YOU.  It should NEVER be about the professional.  A true professional will internally evaluate their reason for sharing and make sure it is appropriate to the situation.  If they are talking more about themselves than focusing on you- that’s a big warning sign!

For example, I had a new client come in who struggled with an eating disorder for years.  They had received treatment on and off from different professionals in the area and really suffered from the “I had an eating disorder therefore I am an expert” mentality.  I will never forget when she told me about how she went to see a local “nutritionist” who at her first appointment pulled out her photo album of pictures of her own recovery process and showed the client triggering images of herself at a low weight with newspaper clippings and then proceeded to tell her all about recovery from her own personal eating disorder.  Yikes.

3.     Your experience will be different and providing one point of view could do more harm than good.

Although there are similarities among eating disorders, no eating disorder is identical, and no recovery process is the same.   Recently, a client shared with me about meeting with a family friend who had struggled with an eating disorder as a teenager.   The family friend told my client about her experience and said that tracking what she ate with emotions and thoughts was really helpful.  My client tried doing this, but it wasn’t helpful for her.  Instead of feeling attuned with her eating she was focusing on food more and felt guilty that her situation wasn’t the same as her family friend.  Luckily she was working with a treatment team (including myself and a therapist) and she was able to process this and discover what was helpful for her.

When someone bases their knowledge on their experience alone they are unable to assess the situation and provide individualized care that meets your specific needs. Instead you end up with a cookie cutter approach, which may work for some, but be incredibly dangerous for others.  A professional who has received extensive training, whether recovered or not, will evaluate the situation to see what is best for you- not just tell you about their experience and “treat” all clients the same.

4.     Eating disorders are life threatening.

It seems like this would go without saying, but it is extremely overlooked.  Eating disorders are deadly, they have significant medical side effects, and they should be treated by a TEAM of professionals.  Just like you can’t look at someone and know if they have an eating disorder, you can’t look at someone who has an eating disorder and know that they are medically stable or “fine” for treatment.  Bradycardia, osteoporosis, heart arrthymias, electrolyte imbalances, hypoglycemia, hypotension, dehydration, depression, anxiety, OCD and suicidality are all things that cannot be seen.  A medical doctor must assess if someone is medically stable and work as part of a treatment team.  Several months ago I had a trainer call me and ask about eating disorder treatment for a client at their gym.  From listening to her describe the situation it sounded like the client was at significant risk of refeeding syndrome.  She and the nutritionist at their gym had no idea what refeeding syndrome was.  (FYI- refeeding syndrome is a potentially lethal condition that occurs when previously malnourished individuals are provided nutrition resulting in electrolyte and fluid shifts with metabolic abnormalities.)  Risky?  Absolutely! That is why a professional will refer to other professionals and will work as part of a treatment team- a medical doctor, a therapist, and a registered dietitian (at a minimum).   A team could also include a psychiatrist, an endocrinologist, a cardiologist, a gastroenterologist, a family therapist, a personal trainer, a dentist, and the list could go on depending on the situation.

I personally think there is great value in recovered individuals sharing their experience with others and providing support.  It can be a great comfort to others by letting them know that they are not alone and can be an excellent source of motivation for someone to finally reach out for help.  There are wonderful platforms where this can be done either locally through testimonials or online with NEDA Navigators, MENTORconnect, or social media.  However, there are limitations and the line is crossed is when a non-professional attempts to provide treatment and assumes that their experience is the only training in eating disorders they need to work with others.  That is extremely dangerous.

Let me also add, that I think professionals in recovery who have training in eating disorders are amazing and can provide such value to treatment.  And likewise, I think professionals who never had an eating disorder but who have received training also provide exceptional treatment and value.  The kicker is not if someone did or did not have an eating disorder- it’s if they did the work to receive the training for a specialized area of practice.

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1.  http://www.aedweb.org/web/index.php/education/eating-disorder-information/eating-disorder-information-14.