My thoughts, my messengers

I have had great intentions to write for the past months and just have not – sorry again to any readers I may still have!

I recently read an interview with two women who have struggled with eating disorders. They both spoke to the idea that they will live the the ED voice in their head forever; that recovery is maximized when one chooses not to engage in what the deadly internal dictator suggests. I have said before that I believe that recover can be achieved to a degree which each individual desires and I still believe that. With proper guidance and unrelenting pursuit of what ones heart really wants (mine was a well life without fear) – anything is possible!

I didn't ever want to live simply behaviour-free but battling that voice and those thoughts on a regular basis. What a life: to look well, act well, but continue to be at war. I imagine the fight would lessen over time but to resolve to that life of struggle is, in my opinion, accepting the suboptimal still.

When I read this interview, I chose to reflect on my experience. I have had classic “eating disordered thoughts” enter my consciousness in the not-so-distant past. This doesn't mean, to me, that I am not recovered or that I am existing in a state of “in recovery”. I believe myself the be recovered – never looking back and not at risk.

To be clear, the “eating disordered thoughts” I speak of are never the kind of severe self-loathing but those of a much more simple and, dare I say, boring variety. To that extent I also wonder what woman, or human for that matter, is not acutely aware of their body at times or considers what they are eating. For sake of simplicity, I will refer to them at eating disordered thoughts because, as an ex ED patient, I am conditioned to refer to them as such.

The thoughts I have on occasion now, serve only as messengers to me. What I have realized when they arise is that I needed to take a solid look at myself and how I am living; they are an indication that I need to reflect. Questions I quickly choose to ask myself at these times are: what am I doing now that needs to be different to honour who I really am? Is there something that I am capable of changing in order to continue living authentically? And a difficult one to ask: what am I not addressing that I need to? Am I avoiding?

Once I take the time I need to reflect and choose my next move wisely, those old thoughts fall away again. 

 

This is the way I have been able to make these thoughts work for me. I did not ever wish to exist with “noise” in my head that I have to think over or fight but it seems that in current treatment, that is the standard for recovery. That is not my recovery experience. There is no “noise” or painful intrusion, just awareness.

The way I see it, is that The System primarily offers patients coping skills. It offers these skills by many names and through a plethora of therapies. I am not denying the importance of developing such skills and implementing the tools taught. Is it not human to benefit from practising mindfulness, assertiveness, distress tolerance, and acceptance? (I choose those only because they are common themes in many popular therapies.)

However, a person who enters therapy with no sense of self has no basis on which to build. If one places no worth on themselves and their life, what is the point of learning any of the above skills and techniques?

I am not criticizing The System for sake of criticism. I do not fault any helping professional or team for trying to help in whatever ways they know and feel best about. I do feel strongly about expressing my understanding of it, now, though. Professionals working with eating disorders try to use evidenced based therapies. I feel that the “evidence” of recovery they set as a goal is placing the bar too low.

Therapists and programs that I experienced in the public system assume an adult mind behind the adult body (in its varying shapes and sizes). A common, though little understood, trait of many with eating disorders is an undeveloped emotional mind. Fundamental to effective treatment is nurturing that mind (and thus the self) to maturity. From there, one can move forward on all the skills above and implement them simply as life skills!

Prior to accessing the program I did, my family doctor seemed to recognize my need for him to be “the parent” and make decisions for me. Despite not being regularly certified or forced to participate in care, I allowed him to make the calls most often. He knew, and I knew, that I was in no position to be telling anyone what I needed.

If one knows their needs and values those needs as well as their worthiness of having them met – what function would eating disorder behaviours serve? Therapies that I engaged in seemed to try to meet me at a point far beyond where I was. There seemed to be two angles. The first assumed I did not know my needs and the therapist wanted to help me identify those needs. After that, we could work on ways to have them filled. However, I had no worth in my own eyes. Helping me realize that I was hurting (and not actually “feeling fat”, for example) didn't mean I would ever ask for comfort.

Due to the deceiving strength of my rational mind – and I have seen it in many others - it was sometimes assumed that I knew my needs and just did not know how to have them met. (Example: I didn't often complain of “feeling fat” because I knew, logically, that I could not possibly be. I knew I was lost, and could say that, but didn't know what to do – so I hurt myself further and lost myself in a familiar darkness). So, sometimes I did know my needs but again, it boiled down to not believing that I deserved to have these needs met.

Give a person who has withstood starvation (or other self-induced abuse in the extreme) some skills – they will likely implement them to an extent and survive for quite some time. The will to stay alive is an amazing thing. Will it be sustained? Who can say? Some people “get by” for their whole lives relying on skills that serve them externally but never find themselves and the wonderful reason they are. Some people are able to start their work with the skills and develop themselves as they implement them. I'm not saying my way is for everyone by any means – just sharing my experience.

I remember feeling such a visceral emptiness when I thought of myself. The idea that whatever was so empty in me could possibly be helped was beyond my imagination.

What I was eventually provided with was a safe place to grow. It was like being placed in a nest for as long as I needed to be there. There were people protecting me and helping me break longstanding habits. There is an element of habit in eating disorder behaviour. It was a place where I was safe to attempt to make many behavioural changes that had been posed to me over the years as part of this idea of “recovery”. With my “structures” being deconstructed one by one, I was left with just my small, raw self. This was terrifying for me but once I accessed that, I was able to begin my real growth and development.

Slowly, I explored “me”. As my mind was ready, I discovered more of what was real. I'm not talking about finding what I like to do and how I like to do it. Though that came too, it was more about realizing that I and all that I really am, and have been since my life began. The core of me: my skills, flaws, imperfections, and talents; a make up that I could value and was deserving of nurturing and love.

Once this was established, I could go on to work on all the things people had been trying to teach me over the years. What was so amazing to me was that I was given the chance to do this in my words, on my terms, and as was right for me. Since leaving treatment I have discovered that many skills I have now are part of what conventional therapies offer. A significant difference regarding the ability to implement these ideas is that I had the time to develop a platform. All the skills taught to me are supporting the platform that is me. What I do reinforces or grows this platform of me-ness. The “me” in this had to be developed first.

I admitted that I have experienced some “eating disordered thoughts”. The difference now is that they are just indicators of the need to get back to my platform, do an inspection, and probably perform some maintenance.

If I was not given the platform of me and been able to take the time to culture love and respect for that me, I know that I would have lived at high risk for relapse if not acutely ill for lengths of time. What is there to fight for when what you think you are is worthy of tolerance at best and/or hate more often? Would you fight for you if you hated you?

I don't have any real solutions to offer regarding common treatment approaches, and that is hard.

I set out with the intention of discussing the idea that living with the mental abuse an ED voice but not acting on it does not have to be what recovery looks like. That would never have been sustainable for me but that doesn't mean it is not for others. It was not desirable to me and I want others who want more to know that “getting by” does not have to be the best that one looks towards.

I know that something vastly different is possible. I can say that the only thing I have to “learn to live with” is the awareness of how I occasionally receive messages from my intuition. I still believe that could change sometime for me. For now, it is how I am prompted to listen.

It takes an immense strength to fight against the behaviours that are offered as solutions by the negative beast in a disordered mind. With practice, that part gets better even with an underdeveloped sense of self – practice always helps! To face one's self as needed and truly, openly reflect, takes a different kind of strength. It also lends itself to a wonderful forward flow of growth and development. I know I wouldn't want to live in any other way.

My greatest wish is that each person could be placed in a nest as needed. To crack their shell and hatch; develop their wings and eventually, when they are ready - fly.

(All images uncredited - my apologies.  Random internet finds.)

Random Rant

So, I'm home, and I have lots to say about being back but today, I am going to go on a bit of a rant regarding the goings on for people seeking eating disorder treatment in Canada.

There has been an ongoing uproar from suffers about not being able to access out of province care for their illnesses. It makes sense to be looking beyond what one has tried and tried again in one's quest for recovery.

Last year, the Ministry of Health, many health authorities, and the provincial ED program took quite a beating as people with anorexia and bulimia bravely brought their struggles to the spotlight. The situation in BC infuriated me and continues to – to an extent. One thing I need to clarify, and finally have the public words to support what I knew of BC to continue this discussion, is that it is anyone's right to seek out of province care in another hospital. It is Canada, and without any sort of specialist's input, one can get a referral to, and access hospital-based care outside of their province of residence.

When I said this last year, supported with my own experience, I was attacked as badly at the ministry if not worse because it was so personal. Who was I to say anything when I had been sent to boutique treatment in Europe, right? Right. Poor little rich girl who was already getting what she needed. Rich? Who are you kidding? Desperate, and fortunate to have family and friends that were willing to sacrifice more than I will ever know to give me the opportunity to get well in the environment I needed, is more like it. I eventually shut up, then, because it wasn't a battle I needed to fight. Despite speaking from experience and with knowledge, I was told I was wrong. I still don't want to become too involved in all this, but there needs to be clarification and credit given to the people who really are trying to help the best they can. So, I quote from a canada.com article, the rest of which regards the personal story of someone else and is not pertinent to my discussion today.

“Ryan Jabs, media relations for the Ministry of Health said the ministry recognizes the tremendous challenges individuals cope with on a daily basis dealing with complex medical issues, such as an eating disorder.

"It is important that any client receives the most appropriate treatment to meet their needs, whether that is in an outpatient, residential or inpatient setting, as determined by clinical experts," said Jabs. "The ultimate goal is to help people recover and live in their own communities - and we need to ensure supports are available for people close to home.

"Clinicians work closely with all their clients and their GP to develop and maintain a care plan to maintain a healthy lifestyle, which includes psychological support, health checkups and dietician support. However - and while we will not speak to individual cases - we cannot force people into care; clients need to be willing to continue to participate in their care."
Jabs the ministry is not denying anyone the option of seeking treatment outside the province.

"Anyone can access hospital-based care for an eating disorder in another province, as long as they have been referred by a BC physician and accepted into the program," said Jabs. "B.C. will cover the cost of this treatment through our reciprocal billing agreement, and no pre-approval from the ministry is required.”"

Within these few paragraphs there is a bit of jargon and towing of party lines, but let me speak about it from my experience again.

First in Vancouver, the provincial program did what they could for me. Eventually, like Jabs mentions, they worked closely with my GP and decided that to keep me in my community was better because it allowed me access, with the frequency I needed, to inpatient care. I also had frequent access to affiliated health staff such as counsellors, an OT, and an RD. I saw my GP weekly at the very least, usually more frequently.

The “clinical experts” involved through the provincial program did their job. They admitted me to their program when my name came up on the waitlist; a couple of times they personalized it as best they could in that they gave me a longer stay or options regrading passes and/or feeding schedules. They continued to see me for follow-up clinic appointments that, although I felt were unnecessary, were part of their communication regarding my care with my GP. I was offered the residential program that is available here, they worked to prepare me, physically, for it. In the end, it did not fit for me and we all agreed on that. Though my experience and discharge were traumatic, we all tried our best.

Jabs goes onto say that they cannot force people to participate in treatment. For the 3 years I spent largely in my wee northern community, very rarely was I certified in hospital and never in the community. My GP understood the importance of having me feel like a part of the team and not governed by said team. As needed, he drew on the support he saw in the community. I was doing no one any favours by participating, except myself. I knew, that despite my emotional mind not understanding what was going on and despite how uncomfortable the ideas that were being posed to me were, I needed to let someone else know better.

Within what we had to work with, I tried. I needed to eat, we arranged individual meal support. Was it optimal? Probably not. I “got away' with many negative things but we all tried. Even when I refused to eat or tampered with my supplements, the people involved in my care knew that the regular contact with me was essential. If I was trying to put the wool over one person's eyes, I might be too exhausted in a day or two to keep up the act and therefore, someone else was able to assess my status and possibly intervene at the right moment. The commitment by those involved with me, despite the tricks I tried to pull, sent me a subconscious message that they cared about the me that was really there, inside – masked by all the negativity of an ED. Just because meal support was labelled as such, it went beyond that.

There were frustrating times. There were attempts to have me abide by contracts that told me what I needed to do to stay out of hospital. There were days where I tried to give them all the middle finger and walk away. Regardless, when I inevitably came back (sometimes hours later, days at most), they were there to help me.

Is this a common occurrence? I'm not sure. I hear people saying they've been “dumped” by their counsellors or dieticians and I have to believe that is their experience. But why? Is it that key component to being a willing participant? Was it the flexibility/fluidity with my care that kept me engaged? Partially, I expect it was. I also know that a huge part of it for me was that my team was not sticking by me just to keep me alive but to get me well. None of us knew how to do it. We did know that there was no text book answer or algorithm to follow for Julia, so we were creative – they in positive ways, and me more often in negative ways to protect my ED.

They seized the moments when more of Me was showing and worked with that. They got to know, as time went on, who was speaking at any given time – Julia or her eating disorder. They were tough years for us all, but we did it – together. There was very little force. The only thing that I felt was forced was that no one was going to give up on me.

Lastly, the ongoing saga of people applying for out of province care and declaring they have been denied funding. It is Canada. We can access hospital-based care in any province we choose if we have a referral from a doctor of any sort who feels strongly that we would benefit from something different. There are no special funding requests needed. To be clear, this is just for hospital-based care. As Jabs says, there needs to be the referral and the acceptance of the patient by the program referred to. If either of these parties feel that there is care within the province that could be tried first, one needs to go through the motions.

When people saw me going off to a world-class treatment centre overseas, of course they had emotional reactions. So did I, as I felt so completely unworthy. Part of me knew, however, that it was the last stop for me. It was going to work or I was as good as dead. I also knew that I had done my best within my country and worked as hard as my sick mind would allow me. I tried the provincial program repeatedly inpatient and the residential program. I tried community based care. I tried out patient in Vancouver. I requested to try the program in Edmonton and that was facilitated within 6 weeks from referral (from my GP and acceptance to the program by the director there) to walking through the doors of the U of A hospital. Nothing fit or provided lasting change/relief from my illness.

I look back with pride in myself for working as hard as I did with the little strength I had. I applaud the teams in each place that worked with each other to provide the best care they could for me. I sometimes proclaimed that x, y, or z would not help me but even with that resistance, I knew I had to try because I was aware that I couldn't not try something new/different.

Hospitals in all provinces do the best they can to treat these complex illnesses. I know that not everyone has access to the degree of compassion I received from my practitioners. I do know that every Canadian citizen regardless of diagnosis, has a right to the provision of care that best suits their needs as is available. A key part of all of this, is the willingness that Jabs speaks about. I have heard it referred to as “readiness” and for me, that was the wrong word. I never felt ready because I had no idea what was on the other side of the hell I knew I had to walk through but I was willing to try and to try again. Yes, eventually I reached a very hopeless place but it was at that time when I was able to access when I needed and what worked. For someone else, to keep trying something new, to keep working with whatever few resources they have, something might click sooner or in a different way. What works for them will manifest itself as the time is right.

The purpose of my rant, today, was to bring light to the availability of hospital-based care for all Canadian citizens but also to encourage people to work hard with whatever they have. Keep communicating even if the possible result scares you. I've been there, I've had to tell people exactly how I was feeling emotionally or physically with the understanding that I could lose my rights to anything in a flash because of my honesty; I've had to do the same thing over and over with little tweaks to try and achieve a different result; I've worked with creative teams to try and make things different with the resources we had.

There is not a person out there who cannot say I didn't try everything I could. Yes, I bailed on treatment a few times because I knew (the real me) that it was not for me but that didn't stop my search for something that might work and even trying what I was fairly sure, wouldn't. I believe it was partially that commitment on my part that kept my practitioners engaged. Also, please don't fall prey to the idea that only “specialists” know how to deal with people with eating disorders. That is far from reality. My team learned from me and with me about what might work for me and that kept me going.

If one really thinks that a set of four different pastel coloured walls are going to make a difference – possibly. There are a few variations in programs around the country, yes. Beyond the program is the possibility to meet people who will work for any individual. I also believe that those people are available in any program, hospital, or community. Those people are available in day to day life – let them be there.

So, yes, keep exploring options and remember, it's not always as difficult as some people make it seem, to access different treatment. The actual process is difficult and painful; lonely and can feel unbearable – but that doesn't change with location. In the end, willingness is key and from there, the possibilities are endless.