Eating Disorder Treatment Experiences – Sheila’s Story

I live in France and have been inpatient six times for periods ranging from two weeks (I left here as I wasn’t ready) to three months (when I did really try).  There are few positives in my story.  I only stuck with the eating disorder treatment as I was also needing treatment for my mood to control my bipolar and keep me safe.  I have been an inpatient in two hospitals, four times in one and twice in another, as it was clear that the treatment in the first was seriously flawed.

There are no specialist eating disorder treatment options in the area of France I live in and it is very hard to get treatment anywhere else as local people always take priority. The closest treatment available is a hospital which already has a large mood disorders unit and is having a specialist eating disorder unit developed.  Currently there is only one specialist member of staff, the rest have no or little idea of what they should be doing and how to offer help or support for eating disorders.

The treatment here has some serious flaws which makes it pretty much impossible to achieve a full and robust recovery, these include:

– Letting the patient decide how much weight they want to gain.  This is really not wise or appropriate as I have yet to encounter anyone in the depths of a restrictive eating disorder who happily signs up for weight restoration!  Even if you really want to recover this can be very hard to commit to.  Nobody I met during my times in treatment aimed to gain more than a couple of kg.  In my opinion if you are very sick with an eating disorder, you are not in a position to make this decision.

– We weren’t encouraged to gain more;  I was told that they couldn’t have us for long enough to gain a sufficient amount of weight.  This fed the eating disordered voice telling me I could ‘recover’ in hospital without really gaining weight.

– We got to choose what we ate in the same way as people being treated for mood disorders.  Again, we were not in a place to do this in an appropriate manner: we could miss out whole food groups (I always said no to any kind of carbs) with nobody saying anything.  Even the dietician didn’t push us to really improve.

– What we ate went unmonitored and nothing happened if we didn’t finish our meals.

– There was no snacking.

– The food was unfailingly healthy.  There were no cakes, biscuits, chocolate, sweets, ice cream, crisps or chips; none of the calorie dense foods that are needed to fuel a decent recovery.  The only time I got a slice of cake was on my birthday.  This went as far as us not being allowed to join in the leaving parties held on the other, mood disorders side of the ward.  We would be dragged back if caught in case we ate any of the above treats, which were freely available for them!

– We were not encouraged to face fear foods or learn to eat ‘normally’, nothing was done about behaviours or rituals.  It was a great place to learn new ‘tricks’.

– We were allowed to exercise, the intensity depending on how ill we were deemed to be.  I was allowed to spend 45 minutes on a cross trainer a day as soon as I arrived – Bonkers!

– As long as you had got close to your agreed weight you could choose to leave.

So how was it beyond these fundamental problems?

Not great basically which isn’t really surprising when the chance of leaving recovered are pretty much zero.  Each week we had one eating disorder group therapy session, an appointment with the consultants in charge of our care (I had two, one for my eating disorder and another for bipolar) and an appointment with a psychologist, if it was deemed that you needed one.

Group therapy had useful moments but was very reductive; there was a pretty rigid idea about how eating disorders work and how to treat them.  I am not sure that I learned anything of any merit with the consultants; they followed a very psycho-analytic model and were thus very distant and cold; they didn’t ever look us in the eye.  This was clearly a deliberate ploy as the one who ran the group therapy was a completely different person in the two situations.

I found it impossible to make any progress in this working model.  I always felt like I was a child despite being in my late thirties/early forties.  I once asked if I could be treated like an adult and I was told no.  I am not sure what to make of that but it marked the end of my engagement with them.

If it was deemed that we were not gaining weight fast enough then we were prescribed supplement drinks.  This sounds good but we were neither given them or supervised; nobody had any idea if we had consumed them.  The premise was that we had to take responsibility for our intake but none of us were in a fit state to do it.  Most of us poured them down a sink and nobody gave a shit.

The staff were also complicated; none of them were trained in eating disorders and it showed;  I was repeatedly told by nurses that they wanted to look like me, that I wasn’t really sick etc.  If you complained, or even politely told the consultants then we were told off and that the staff knew best.  They had no idea how to help someone struggling with a meal.  There would be one member of staff in the room at meal times; mostly they just watched the TV; it was irrelevant anyway as it didn’t matter how much food we threw away.

They generally had no idea how to handle the mental side of eating disorders.  Some of us saw a dietician who had no training in the field.  If we were avoiding whole food groups she would tell us to try and request it to get comfortable having it on our plate, then, if we could, eat a tiny bit and take it from there.  Nobody checked that this was happening so of course none of us made any progress.  I left, even when I was in for months never having eaten more than a mouthful of pasta or rice.

During my four hospitalisations there I never gained more than a couple of kg which was always considered enough.  I had no idea how to eat.  I left as scared of my fear foods as ever and with the idea that I didn’t need to really gain weight or deal with the emotional side of eating and that I could freely exercise.  I left feeling like my health didn’t matter as we were kicked out far too early, recovery didn’t seem necessary.  People were discharged having gained no weight or even having lost – they were considered untreatable but they hadn’t even tried.  One girl was inpatient there four times without gaining a gram.

There was no tube feeding even with patients who were horrifically underweight and incapable of eating.  No tests were done to see what damage had been done to our bodies, we were told that the only thing we had to worry about was osteoporosis.  This is clearly bollocks.  I was lucky that my regular psychiatrist managed to arrange two days for me at a specialist centre several hundred km away to have a full battery of physical health tests.  Most people were not lucky enough to have this opportunity.  I was her first eating disorder patient to be treated here and she was horrified by the treatment (or lack thereof) as she had spent years working with eating disorder patients in other parts of the country.

I was allowed home for weekends (10am Saturday to 8pm Sunday) straight away which allowed me to eat as little as possible.  We were allowed to wander freely around the hospital which allowed people to purge, even if their toilet was locked.

The whole situation was ridiculous and it is questionable whether it can really be classed as treatment.  They didn’t even go as far as the ‘recovery but not too much’ model that is often seen.  I felt like a nuisance and relapsed every time, it would have been very hard not to as I had made so little progress physically or psychologically.  I would say that the only positive was that it kept me safe at times when I was having real problems with suicidal thoughts and self harm.

After the four attempts my psychiatrist and I accepted that this service was incapable of helping me (or anybody else) so I didn’t return.  The next two times I needed inpatient treatment it was primarily because of my suicide risk and depression.  The fact that I got some support with my eating disorder was a bonus.  For these two admissions I went to a psychiatric clinic and in general it was much better.

There was much support: we saw our consultant daily and psychologist as much as was needed and could request a session if we needed them.  Happily, the working model was not psychoanalysis.  The staff were much more supportive and really listened.  When it came to my eating disorder, I did make some progress.

The meals were fixed, the only things that were accommodated were being vegetarian or allergies etc.  This meant I had to face all my fear foods straight away, as well as normal portion sizes.  Both times there were only a couple of eating disorder patients and we were not allowed to sit at the same tables at mealtimes.  At first I simply didn’t eat much as it wasn’t monitored; it wasn’t a specialist service after all, but they did do their best for me.

There were surprising benefits to this system.  By eating with people with no eating issues I could finally see just how little I ate and how disordered my habits and rituals were.  I think that this was an inevitable consequence of eating with people without eating disorders week after week.  I eventually managed to eat and to eat things I hadn’t for years.  I definitely made progress; my last admission was not just to deal with my mental state, it was also to break the binge/purge cycle I had fallen into.  I had always been purely restrictive but I started bingeing uncontrollably and I was just too depleted.  It was hard but the admission did successfully break this and I have only binge / purged three times since I left and not for about four months now.  Unfortunately I also never gained more than a few kg during these admissions as it wasn’t an eating disorder centre so again I relapsed after leaving.

My regular psychologist, psychiatrist and I now accept that I need to recover outside of hospital with support from them.  I left my last admission in April of this year and this is where I am now, taking the bull by the horns and doing it myself!

 

Follow Sheila On Instagram… @Recovering_climber

And follow Sheila’s own blog:   A Mirror on Madness 

 

And if you have not done so already, please see more about the petition to appeal for a review of adult eating disorder treatment services around the world – things needs to change!

#ChangeEDTreatment Petition