Wednesday, 7 August 2013

'Non-compliance' with ED treatment

I have heard from many patients that they were kicked out of treatment because they were 'non-compliant' with their treatment. For some, this was what they wanted because they did not want treatment anymore. But for others, this wrecked their recovery and left them hopeless.

First, what does 'non-compliant' mean? Technically, it means that you are unwilling to do what your treatment plan/team says you should do to get better. In ED treatment, doctors refer to a patient as being non-compliant if she/he does not eat enough, does not gain weight, or does not suddenyl have amazing thoughts and high self-esteem. But, is this non-compliance? Or is just part of the illness?

My first time in therapy was when I was in grade 12. Let me tell you - I hated it. It was with some therapist that my father found because 'she was the best with EDs'. I won't get into that part much, but I will just say that I absolutely hated it. No offense. Anyways, this therapist worked with me for a while. But after my weight started to plateau, she brought me in for a serious talk. Basically, she told me that since I was not trying hard enough to gain weight, I was being non-compliant with treatment. If I did not gain weight and get back into recovery mode, she said that I could not see her for therapy anymore.

That really hit me hard. I was not trying to NOT gain weight. I was just scared of it. And I felt so weak and tired of gaining and eating. I was frightened, and I felt as though I did not have enough support and love around me. And now this therapist was telling me that I was being NON-COMPLIANT?! I'd prefer to call it scared. I was sick with ED, an illness that despises food and weight gain. Of course I would have moments when I would not want to gain and eat! But this therapist was acting as though as a consequence for my illness, she was letting me go.

Let's rephrase the situation: what if I had cancer, and chemotherapy did not stop the tumour from growing? What if, even after chemo, my cancer continued to grow. Would my doctors kick me out of chemo because I was being non-compliant? No. Of course not. Because it woud not be my fault. The same thing goes for patients with ED. While some people believe that patients with ED are purposefully being non-compliant, we need to realize that they are scared of what recovery will bring and that this is a symptom of their illness. Would a doctor who was treating a patient with chemotherapy blame the patient for their cancer? No. Then why do we blame ED victims for ED?

Maybe 'non-compliance' is actually used in the ED treatment world for 'not going as I had hoped'. For example, maybe therapists tell their patients that they are being non-complaint when really, it is the therapy that is not working out so well. Or maybe the treatment approach needs to change. Or perhpas the patient needs to realize that recovery is really what they want. Helping patients stick to recovery is important - they need support, love, and motivation. They need to realize that even though eating and gaining weight is hard, recovery is worth it and it will get easier. So, perhaps, we need to stop using the word 'non-compliant' as an excuse for failure of treatment and start seeing where the real problem is. It could be motivation, treatment approaches, or something else. But blaming the patient and calling them non-compliant is unfair and unacceptable. My message to treatment providers is this: stop blaming the patient and calling them non-compliant simply because your treatment plan and strategies are not working as you had planned. Start acting like a real professional and find out where the real problem is. Then, make a new plan with the patient. Do not be harsh and treat the patient as if it is their fault that they are not improving. This is part of the illness. ED is tough to treat - ED will not go away quickly. So let's stop blaming the patient for failure of treatment and therapy and srtart finding new and better ways to help the patient overcome this illness.

17 comments:

  1. I am so sorry that your therapist was harsh on you and instead of trying to motivate you, engage you and support you by calming your anxiety and dissipating your fears and dismissing the negative thoughts of ED who was trying to scar the hill out of you.
    Your therapist failed to motivate you and help you making your own choices.
    Your therapist was blaming you and not the ED.
    Your therapist had little experience and so she/he abandoned you but to avoid feeling inferior and incompetent ,put the blame on you and telling you that you were incompliant.

    Now you prove to everybody that you are complaint and pioneer in ED treatment and you are setting a good example for all ED to follow if they choose recovery.

    Kelly W
    Toronto

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    1. Thanks, Kelly. I know that you are an amazing therapist who actually 'gets it'. God bless you!

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  2. No one can say it better that what you said.
    No blame, no judge as this hurt and you blaming the victim not the criminal.

    Magaly

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    Replies
    1. And no one can say that better than you!

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    2. I appreciate your reply.
      Thanks again

      Magaly

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  3. Marina
    I was kicked of the program 4 times for same reasons. I am relieved to hear you saying that they did this to cover their failure and incompetence to treat us and instead of admitting their plan not working and they must change it ,they just blame ED victims for what they say non compliance .
    The last time I was treated ,I struggled hard and did every thing I could do as I was sick and tired of this illness and here I am ,without relapse for more than 6 years.


    Recovered ED victim

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    1. Your story is also inspiring. I am also sorry for any pain or hurt you got while seeking help for ED. But again, you took control and showed others how strong you are. It is a shame that some treatment professionals still treat patients this way...

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    2. We suffered a lot from this terrible disease and We deserve respect ,smile and comfort but not blame.
      Thanks for replying to me

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  4. Oh BOy Marina Marina
    I do not know how therapist dare to do that to you.
    Didn't she know how to comfort and support someone running into tough time??
    As I told you I owe my recovery to you ,even I did spend one whole year in and outpatient .I did see 3 while I was in signed AMA and 4 kicked out for compliance reasons and same number kicked or dropped out during my outpatient journey.
    I sustained all the hassle,humiliation by nurses(nurses by name not like you Marina) and I tolerated all of this and did everything they asked for because I was determined to get better once and for all.I felt really I can not live with disease and this my opportunity to get rid of it completely.
    Haven't had this determination and motivation and your blog that gave me heads up to all what I expected ,I would have to admit ,I would have been kicked out also.

    I am still not sure why program director do not change their plan and help victims without label them as non compliant.
    It is contradictory to me when they teach us DBT and focus on validating ourself and perk our self esteem and at same time do not address problems like treatment failure and just blame victims.

    Strange isn't it!!

    Good new you and me and many others able to choose recovery and help themselves with or without in or outpatient.

    Anne

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    1. Anne, I am deeply sorry for all your pain, but look how far you have come! it is really unforunate that some treatment centres are like this, but all I can say is that if you cannot change others, try making a change in yourself. this is definitely what you did - and look at you today! your story is so inspiring and touching. I am beyond proud of you!

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  5. Even though I made the change myself and I am committed to it body and soul but you are the one who inspired me and woke me up. I thought I had very trivial problem.

    Thanks Marina so much.

    Anne

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  6. Hi Marina
    I am so sorry that therapists or health care providers blame clients rather than looking at reasons for the failed plan and fix it.
    I do admit that sometimes nurses and team describe in their notes that client is non compliant when they forget their medication or not heeding the instructions or not showing up for their appointment etc.
    Good news now most health care providers endorse the concept of empowering the client to take control on their health, motivate them to make the necessary change and work with them to make the plan that they are able to follow and it works.
    Look at you Marina and look at Anne ,because you believed in recovery and took your own responsibility ,that is why both of you succeed in what many clients failed to do despite the hospital admit ion and many providers visits.

    CJ
    RN

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  7. Let me urge every person especially therapist please do no harm and this is the least.
    If you are able to do more ,please do. You can support,listen,encourage ,send positive message and show understanding.

    Lenus

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  8. Marina you pushed on the right button.
    Blaming blaming and blaming that what I had heard for years.
    Family and friends used to blame me for not caring for my body and ignoring my health. This was harsh on me .
    Now while I am recovering ,no body dare to blame me any more.
    I wish I can get an apology
    I wish all ED victims receive a formal apology from program directors and hospital administrators for the harm they done when blaming ill people and send them home without complete recovery

    Nanaraj

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  9. Marina
    It is a shame that they kick sick people out of treatemnet even if they are not compliant.How human it is to deny people treatment and help.Why can not help them to comply or understand why not complaint and help them.
    Please people be human and support those are suffering.
    So Marina you made the right choice when you choose to leave the failing program with all its negativity and you have managing your own treatment with amazing success and now you advisng others and give others tips from your experience
    WOW

    Mays

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  10. Shame on therapist or doctors who blame patient or who do not try to understand their problems and help solving it.
    I know doctors now tend to follow patients lead and have patient take charge of their health but patients need support,advise and guidannce from thier doctors.
    I sorry for having you Marina to struggle with non helpful therapist.

    Gerry

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  11. I can not understand how hospitals and programs kick people out and they are still sick and put the blame on them rather than admitting ignorance and failure of their plan.

    Lillian

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