What the ED community needs...

...is a page like this:

Why Schizophrenia Patients Are Difficult to Treat

It explains the issues in a clear, non-blaming, but easy-to-understand format. For many of these (with the potential exception of homelessness as a major issue for many ED patients), replace "schizophrenia" with "eating disorder" and you are probably pretty correct.

Certainly some things I would include:

Chronic ED sufferers often lack social supports that improve the likelihood of recovery.

An ED sufferer often lacks insight into the seriousness of their condition, which makes it difficult to engage in treatment.

EDs can be egosyntonic, which means that the person likes having their disorder. It's hard to work on getting rid of something you like.

Addictions and other co-morbid conditions can complicate ED treatment.

Our culture often praises ED symptoms and normalizes food and weight obsessions.

Insurance and/or national health systems don't provide adequate care.

Now it's your turn: is there anything else that you think makes ED treatment difficult? Share your thoughts in the comments section!

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Anonymous said...

Despite popular belief current evidence shows that most EDs are not caused by parents or chosen by sufferers. Patients and their families do best when they are not blamed for the illness it viewed as part of the solution.

hm said...

Many (most?) ed sufferers are painfully sensitive to criticism/rejection. All therapists are human. All humans experience frustration. Treating ed sufferers is frustrating for both the therapist and the client- it is full of ups and downs. Many (...most?) ed sufferers are sensitive and empathic, and pick up on the slightest hint of frustration (hidden or overt) in their treatment team members. This leads to treatment setbacks.

Not to mention the effect of the blatant frustration exhibited by the untrained family members and friends whenever there is a bump in the road- and there are so many bumps.

Anonymous said...

You are right! Yesterday, my T. yawned and I felt bad. "I am being boring -talking about the same things." "He could be resting, but he's stuck with me" etc...

I also start to cry if my T. ask me confrontation style questions. I can't handle confrontation.

I also have problems with concentration and it's so hard to express myself. (I can't form the words.)

Cost of medication! Refeeding can cause problems with digestion and acid reflux. My Nexium costs $50.00!

Patterns. Patterns...
I told my T. that it's hard to make decisions. He said that I made a decision to come to therapy. I said I wasn't making a decision -I was following the pattern of seeing him every two weeks ;)

Anonymous said...

For many eating disorders, there is a lot of shame associated. And there exists a feeling that even if a person wants healing that they should be able to heal themselves with self-control. There is an oversimplification of healing--for anorexics, people think they just need to eat more. For bulimics or binge eaters, people think they just need to eat less...

Carrie Arnold said...

Great thoughts, everyone! Keep sharing!

Jess said...

Chances are, some part of the environment or living situation that the patient had prior to and during their eating disorder likely contributed to it on some level, or perpetuated it. So by JUST changing behaviors and nothing else, and putting them back into the same situation as before, they will likely fall back into the same patterns. Other changes need to happen, whether it be in their living arrangements, or education/therapeutic guidance for their loved ones/support people.

Jess said...

Also, eating disorders are lonely illnesses. Not only do patients tend to isolate BECAUSE of their illness, the fact that they isolate only perpetuates it. They want to be alone. It's hard to convince someone who, in their disorder-wants to be alone, that they need to and should reach out for help. Things that are good for us, like social support and structured time to get out and do something scare the CRAP out of us, and threaten our disordered desire to isolate.

Agrace12 said...

Patients often feel like they become their ED and they will lose their identity if they give up the ED. This makes it so much more difficult to give it up. Losing the ED identity. Something I am struggling with!

HikerRD said...

Agreed, agreed, agreed! What complicates things is that there is no single etiology, or single disorder. And therefore there is no single treatment. Strangely, there's a parallel with MS which I live with--I don't "look" like those with MS--the non-ambulatory, extreme cases, and that can make treatment more difficult to get--unless someone's looking on the inside, at scans. For the eating disordered, the "inside" might be the psychological workings/thought disturbance/biochemical underpinnings that must be addressed, vs solely the outside picture.

Anonymous said...

There are a couple of other reasons I think EDs are hard to treat and overcome.
Although EDs are not "about" food and weight, food is a crucial part of the recovery process. There would be few other conditions where the very thing that defines the disorder is also the medication (so to speak). Those who have never experienced an ED can't conceive of how one of the basics for life can cause me so much distress and why I can't just eat. I must relearn how to nourish myself, maintain a healthy weight and manage my feelings in other ways. For a while, I know that I can't trust my body's signals and no matter how I feel, I must eat. I must eat things that other people avoid (like full fat products)which is really hard when every "health" message contradicts this. Also, whilst I try to find other ways to manage my feelings, I still have to come back and think about food!
I agree with earlier statements about the positive reinforcement that I experience making it hard to concentrate on recovery. Many times people, including those who should know better, have said that they wish they had my willpower or a little bit of my "anorexia thing". So now it becomes OK for them not to eat but I have to.....WTF??
By far the hardest thing that I had to realise in order to move forward was that no matter how much cognitive work I do, I can't be well AND have ED behaviours. I have a high stress job and am always calm, assertive and confident in the work environment. These attributes often won me praise from my colleagues and clients. I believed that I was managing well until it dawned on me that outside work, I would still restrict my food, exercise excessively and use laxatives. That was how I was managing at work. I had a very effective method of diffusing my stress when I came home. I was thinking that I was well but I was quite deluded! Because no one else knew about all of the ED behaviours, I could kind of ignore them. I have been slowly reducing these unhealthy behaviours by reminding myself that I CAN'T BE WELL AND HAVE AN ED and that I just have to do what I know is right, not what I might feel is right.
(I must also say, Carrie, that your blog has been one of the most important, inspirational tools I've found to help me keep on track. So here is yet another thing that makes recovery difficult - lack of mentors like you!)

Unknown said...

Great list: important list!

I would add that parents are not well-equipped to understand or ACT. Not traditionally, not logistically, not legally.

Anonymous said...

Thank you for this. I struggle from eds for over 10 years now, and always think It would be easier to deal wih a different kind of addiction,... You need food to live, so you can't exactly go "cold turkey"! Every day feels like an immense struggle to find a balance.

I also have an older brother who lost his entire healh and personality to schizophrenia. Being stuck in a non stop struggle w Ed, and feeling like its impossible to ever recover, I still am much, much, much more heartbroken by schizophrenia.

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote


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