I have wanted to write about my experiences in the hospital system for a while now. I think it’s very important for people to read about them – because there’s a lot that could be improved, a lot that should never have happened. There have also been a lot of ‘gifts’ – people I’ve met, experiences and insights gained, and the not-at-all-little-fact that I’m alive – here and now. With all that’s happened, I should not be alive. I owe my life to the hospital and the people who work there, and I will be forever grateful to them for this.
There is no way I could ever write about all of it without writing a huge thick novel, because so much has happened over so many years. I thought it might be helpful to write an introduction post so that all the boring details are gotten out there in the beginning and when I post about my experiences, I don’t have to keep explaining those details quite as much. It also might help to just set the scene a bit, and so this post is really just an overview. There will be more posts in the near future on topics such as – what is an average day like? What are meal times like? What happens in ward rounds? etc – also I will write about experiences that I personally had, that stayed with me. I will endeavor to keep the hospital and the people involved anonymous, although if you live locally to me, you will probably recognize places and even people.
Over a period of approximately fifteen years, I had over 150 hospital admissions – as documented in my hospital files – at what I’ll just call ‘the hospital’ for my eating disorder. (I am sure there must be errors, because that is too high a number even for those years, despite the continual admissions). Most of these were on their eating disorders unit, which is comprised of four to five beds within a 25-bed psychiatric unit that also houses the Geriatrics and the overflow patients from the other psych wards. It’s a locked ward, meaning bars on windows, very strict security, body and belongings searches, confiscation of items that might be used as a weapon (you would be surprised what could be made into a weapon – desperate people become very resourceful) and the majority of the patients are there against their will.
I also had admissions to the medical wards for eating disorder complications – including general wards, ICU, CCU, and the infectious diseases ward (as a result of having dangerously low white cell counts). Mostly, the ED unit kept me there when I was medically unwell. When I was having TPN, all of the nurses learnt how to manage it specifically so they could keep me there instead of sending me to a medical ward. I think it’s because they have decided there is a huge danger of an ED patient on a medical ward being able to engage in ‘tricks’ that might ultimately end their own life, and I’m grateful that they went to all that trouble for me and those who might need TPN in the future.
The ED ward at this hospital treats more acutely ill patients since there are so few beds to go around – those beds are to cater for the entire state, with a population of now approximately 4.6 million people. In our state, there is one other ED unit – a very small private hospital a few suburbs away with approximately 12 beds. They don’t cater for patients who are medically too ill, and they require you to be ‘ready’ to recover – if you aren’t, you are kicked out. I have never been inpatient at that hospital as I can’t afford insurance, I wouldn’t have been able to stay there anyway as I’ve always been too medically ill and too non-compliant up until about 2 years ago.
I always have, and still do, carry a lot of guilt for how much I needed these scant resources. My being there meant that someone else missed out, and it’s part of what motivates me to stay out now – so as not to ruin any more people’s chances of getting help.
These resources however are far too rare, especially for the population they are meant to support. There are states in Australia where this ratio of ED hospital beds to population is even worse. We also have issues like patients not being accepted as they fall outside a catchment area of a certain hospital – you can’t pick and choose which hospital you will go to unless you are going to a private one, and many people just can’t afford that, even public health isn’t free here any more. WE NEED MORE TREATMENT OPTIONS for people with eating disorders. Desperately so.
I’ve no idea what the average length of stay for patients here is – but they are usually at least a few weeks to months. I know patients who have had over a year’s continuous admission there. My longest was approximately 10 months, my shortest, two weeks. My usual length of admission was 3 months. Many times, I didn’t even have an entire week at home before being readmitted for weight loss. I was on an involuntary treatment order for almost ten years continuously, so I had no choice about being hospitalized, and no choice about my treatment. At one point I tried to take out a Do Not Resuscitate order in the fear that like a friend of mine, I would be resuscitated after a heart attack resulting in badly crushed chest and agony for whatever lifetime I had left, to be told that because I was a mental patient, I wasn’t even permitted that dignity.
This hospital, to it’s credit, has tried it’s best to develop it’s eating disorders program over the years, and since I’ve been there over that time, I’ve noticed the changes. When I first started to be admitted, it was a very lax program. There was a lot more freedom and not many rules. Groups were pretty non-existant, but there was a more ‘family’-like feel, with the ED unit becoming a safe haven from the world where patients came for support even after discharge, with an unofficial day/drop in program. We were given a lot more responsibility for helping ourselves, even down to prepping and setting up our own nasogastric feeds and putting down our own tubes every night. (Of course this led to sabotage.)
Things these days are far more strict. Nowadays you are strictly controlled for every minute of your day. You eat what they make you eat, you can’t have any special requests. You eat when they make you, for a set amount of time, and you can’t eat at all outside those times. You sit with the staff or are in group for an hour after every meal, and they do their best to have groups – even if most of them become just watching old Glee DVDs because while the program is great on paper, there isn’t the staffing to carry it out.
You can’t get out of the weight gain either – if you even eat all but just one bite of a meal, you are supplemented for the entire meal. They do force – there is simply no way out. There is a large and well trained security force at this hospital and the staff will call them up to the ward regularly to restrain people.
They’ve become more knowledgeable about the various tricks and ways to sabotage and every loophole possible has been closed off. In terms of identifying it’s weaknesses and doing it’s best to rectify them, this hospital has come a long way.
After years of continual admissions, I was allocated a case manager at our mental health clinic, separate from the hospital campus. Instead of going to the weekly ED clinics to be weighed and see the dietician etc – I would see my case manager/s (sometimes I had two of them) and a consultant psychiatrist. I preferred this. The focus was now on trying to give me a better quality of life with the time I had left – and to treat me in the community rather than always inpatient. I still spent as much time inpatient, but had more support in between – all week instead of once weekly.
As my health deteriorated I really needed the continual support as I became unable to care for myself a lot of the time. I did come very close to needing to be institutionalized in a nursing home or similar and I’m so glad that didn’t happen. I’m especially grateful to the home and community care team in my city who for years have helped me be able to stay at home by helping me with self care, shopping, cleaning, etc. If I’d been institutionalized I probably would only have gotten sicker and inevitably died.
Two years ago, I finally was able to put on a bit more weight and to keep myself there, enough to stay out. I am now still a community patient with the same team as I’ve had for admissions – I just don’t need to be admitted any more. Hopefully over time, I will need this team less too. In fact, I wish to be independent and responsible for myself some day. I never want to go back there again.
However, if I do – you know what to get for me: (and you would win the internets and my heart if it was Shalimar in there!)
I hope this hasn’t been too boring – please let me know if there is anything I can improve. There will be more – hopefully less boring – soon.