Reading My Old Medical Records (PART 1)

Today’s post is a little bit different as I’ll be sharing a part of my history that I’ve never really shared before, that is to say, I will be reading, word-for-word, one of my old medical records from when I was trying to get help for my eating disorder.

I know there’s a lot of taboo around sharing personal medical information, but you know me – if people aren’t talking about it, I’m gonna talk about it! So much of what happens in the healthcare system – or should I say, sickcare system – is invalidating, harmful, and traumatizing.

I was talking to a client the other day in which we were joking about how all our past therapists were always in search of this “deep dark hole of trauma” that caused our eating disorder, but how “treatment” itself was the most traumatizing thing of all! My point is that these negative healthcare experiences are shared among so many people, and my aim with sharing this content is to provide hope to not only individuals struggling with the system right now, but also to parents. That no matter what you or your child has been told or what ridiculous conclusions have been drawn or how treatment was denied because you didn’t fit this perfect image of what the “professionals” had in mind, recovery IS possible for you.

Before we dive in, I want to give you something for free and that is my audio training: 3 Steps to Recovery from an Eating Disorder as an Autistic Person! In the training, I share my own personal story through recovery from an eating disorder as an autistic individual, and I guide you through 3 simple steps to give you the clarity and confidence you need to use your autistic traits to your advantage in recovery. Click here to listen to the training and without further ado, let’s read one of my old medical records!

Reason for intake:

The treatment at the past eating disorder facility has stalled. Livia and her parents noticed that the eating problems were a function for Livia and not primarily rooted in eating disorder. The system is curious what the new facility can offer.

Patient’s request for help:

Livia does not know exactly what she wants help for. She notices that she panics right away, but is not quite sure why and what exactly happens next. Livia says, "I don't know what comes from my body anymore and what comes from my head."

Parent’s request for help:

According to parents, the past eating disorder facility aggravated the symptoms. No clear help request has been formulated by parents.

Intake Summary:

From the age of 11, there are internalized problems, of which feelings of loneliness and fear are pushed away and/or created through compulsive behaviors and not eating. Rigidity and strong black-and-white thinking play a major role in this.

On the other hand, the feeling of loss of control leads to violent panic and anger outbursts. Livia recognizes that the age appropriate to her physical appearance (12 years old) seems to be a reflection of the age at which she became socially and emotionally stuck.

Differentially diagnosed, the discrepant IQ profile may well play a role in the rigidity and anxious constitution, but this does not sufficiently seem to explain the emotion regulation problems. One could think of borderline personality disorder and less likely of an autism spectrum disorder.

Conclusion:

In summary, there are indications of personality problems in a girl with low self-esteem and a very anxious constitution and a strong tendency towards rigidity and control in the form of compulsion or not eating – including parent relationship problems and parent-child relationship problems.

We recommend a treatment aimed primarily at emotion regulation and personality development, such as Dialectical Behavioral Therapy. We have emphasized that we see entry for treatment, preferably DBT, but due to the lack of a clear help request from Livia and parents, we have decided to deny treatment at our facility.

Reflection of the medical record

The first time I read above words, I became really emotional. I clearly remember this intake and how the so-called professionals kept emphasizing the “no clear help request.” It’s so frustrating to think how they literally denied me treatment because I didn’t know exactly what I needed help with. Like, if I knew, I obviously would have already done that!

The sentence that stood out most to me was “One could think of borderline personality disorder and less likely of an autism spectrum disorder.” Thankfully I was not misdiagnosed with BPD, but I think this medical record so vividly illustrates how healthcare professionals so often do misdiagnose autism and as literally stated, even discourage the possibility of autism by saying “it’s less likely”!

For this reason, I believe self diagnosis is more than valid. In fact, if you believe you are autistic and do feel that imposter syndrome or shame around diagnosing yourself, I highly highly recommend you read the post on why self diagnosis is valid.

All that being said, getting help and validation in the healthcare system can often cause more trauma, which is why it’s so important to validate yourself. If you are struggling, give yourself permission to struggle and give yourself permission to get help that’s perhaps not traditional treatment! I mean, not to toot my own horn or anything, but I started my coaching business and created my course because they’re the alternatives I wish I had when I was struggling!

Getting the right help

Professionals are often placed on a pedestal, but for what? Because they went to school and passed some exams and now can hang a shiny diploma on their wall? No amount of qualifications qualifies ANYONE to take your hope. It doesn’t matter how you get help, all that matters in the end is that you find someone who is able to help you!

One of my favorite metaphors that illustrates this is the following example of a surfer. Say, you want to learn how to surf. I absolutely don’t know how to surf, but the reason I’m bringing up this seemingly random sport is because when I was in Bali you had a lot of surfing. Anyways, you have two options for who to choose as your surfing guide.

Person A, let’s name him bookworm Wiladorm, has read every single surfing book on the planet. Anything that’s ever been written or said about surfing, you can count on him to know it! The thing about Wiladorm though, is that he’s never actually surfed before. He talks the talk, but has never walked the walk. Or even better said, he’s never surfed the surf.

Then, we have person B, let’s name him Surfer Alexander. Now, surfer Alexander has definitely done his research on surfing. He’s read quite a handful of books on surfing, but spends most of his time out in the water actually surfing. In fact, he loves surfing so much that he’s made a daily practice out of it. Surfing is so in his system, he just can’t help but want to help others internalize his techniques!

Now, if you wanted to learn how to surf, which of these two people would you want as your guide? The guy who’s only read about surfing but doesn’t have lived experience, or the person who has lived experience and is constantly reading about the newest research and techniques?

Obviously, I’m using this metaphor to illustrate that nothing beats lived experience. Although I do believe there are professionals out there who genuinely care, you will never know what it’s like to experience an eating disorder if you haven’t experienced it. When I work with clients, I often resonate so deeply with what they’re saying because more often than not, it’s something that I struggled with myself! And because I now am on the other side of an eating disorder, I would absolutely love to be your guide in helping you get to the other side as well. To book your very first call for 1-1 coaching, simply click here!