Wednesday, 26 March 2008

The differences between the US and UK health care systems

I have experienced health care on both sides of the pond, so whilst some may disagree with my opinions, I believe them to be valid.

In the UK, it's all about maximising resources, saving money, damage control/harm reduction. I've been shunted from program to program, deemed "unresponsive"/chronic and had several years of "treatment" where the primary focus was on living with my eating disorder. I was taught how to maintain a low weight in as stable a way as possible. I was taught how to minimise the damage I was doing to my body. This, to me, was great. I was tired of living in psychiatric units. I was tired of being held down and force-fed, tired of my body being controlled by others. Once I turned 21, the focus changed and in order to prevent wasting more money on treatment I wasn't making use of*, it was all about helping me to avoid medical crisis after medical crisis, and manage my condition in the community. This is fine and well. Everybody knows that eating disorders can kill people. What people don't know is that if it doesn't kill you straightaway, you live, day in and day out, within a vacuum- nothing is as important as food and weight. You think of nothing else. You have no social life because your malnourished state is causing such obsessive thinking that you cannot hold a conversation, never mind relax over drinks with friends (friends? oh- did nobody tell you that you lose them all? They have lives to live that DON'T revolve around calories/numbers). Anyway. Back to my point. I was being taught how to stay entrenched in my illness without really realising the impact this would have. It wasn't just a case of being a normal functioning human being who happens to be rather thin. It was more a case of being left to my own devices knowing that there would be some intervention only if and when I should happen to collapse in the street and somebody calls an ambulance. Fair enough. The National Health Service has spent a fortune on my treatment- money that maybe could have been better spent elsewhere. Maybe on something other than just refeeding. Or on a program better suited to an anorexic 15 year old than a juvenile detention centre (after one doctor washed his hands of me and nobody knew quite what to do with this child who would just not be normal dammit)

So, yes. I've had my fair share of NHS treatment and quite frankly, would not be alive today without it. But...there's always a but. Maybe I am being a little too 'Pollyanna'-ish about it, but I still believe that there is a better life out there for me. I don't think I have to settle for what I currently have. I don't want the life that the NHS has mapped out for me- several more years of outpatient weigh-ins/check-ins, doped up on psychiatric medications, too stuck in my own world to hold down a job/live independently/have a *gasp* life.

This train of thought was what prompted me to try a different approach. The NHS was (and remains) a closed door in terms of actual help with a true recovery for me. I looked elsewhere and was very fortunate to qualify for a research study in America. I do consider myself VERY lucky to be offered a place on this program. The treatment was free because I participated in research. From the word "go", it was clear that they KNEW recovery was possible. They weren't even going to entertain the idea that living with an eating disorder was an option. No sir-ee. This was a whole-hog "refeed/fix the brain/eat like a normal person/you can do it" program. I got to a healthy weight for the first time in about 6 years. I ate pizza and French toast. I started a part-time job, a part-time class at university, met new a life. Things were starting to take on a new and exciting form for me.

I graduated from the program, and for follow-up, attended a world-renowned treatment centre's day program. Don't let the name fool you kids- you don't always get exactly what it says on the label. This was a "wham bam thank you ma'am" program. You paid a rather disgusting amount of money just to be scrutinised as you cut your sandwich into quarters, and sat in endless hours of silence as the groups were facilitated by robotic clones who seemed brainwashed into saying little more than, "that is inappropriate conversation" should we even dare to utter the slightest reference to food/weight/body image/celebrities/men/media/fashion (hence the silence- you can only talk about the weather for so long!). The first signs of struggling, you were issued a "contract"- break the contract and you go to a higher level of care (oh, and what do you know? they even OFFER a higher level of care, at...what a surprise! An even higher cost!) I didn't technically break my contract, but it came to a point where I had "saturated my time on the program". Their explanation was that I would not get more benefit from the delights they offered. The reality was that I was paying the sliding-scale fee, and after a certain length of time, they wanted to give my space to somebody paying the full cost. Fair play. Business is business.


Business should not be *just* business when it comes to health care. What about the patient? Where do they come in? Isn't their health a priority? Nope. Not if they don't have the money or the potential to sue at some point. You have enough to pay for treatment but not for a lawyer? You're home free. You have semi-decent insurance? They'll take you, all concerned and caring, then 3 days later kick you out when insurance pulls out. All of a sudden you go from being "in desperate need of help/support/observation", to "there's no more money- pack your bags". Seriously. I've seen it happen.

Americans may read this and not bat an eyelid- it's the system they know. I was shocked. The system, in both countries, is fatally flawed. No, I am not being melodramatic here. I don't even want to imagine how many people die each year as a result of the US money-making machine that they (almost laughably) call "Health care", and the British system, whilst free, is almost as bad with the "postcode lottery" and "care in the community at any/all costs" approach they take.

Either way, it's not your illness or symptoms that determine what kind of treatment you get. Whether it's an eating disorder or something completely different (cancer, diabetes, a broken bone), in the UK it's about spending as little money as possible to stop you racking up a huge bill to the Government. In the US it's about what insurance you have and whether that person sitting at the admin desk in the insurance office decides whether or not today is your lucky day (I wonder if they use some kind of magic-8 ball system? Or a spin-the-bottle type game each time a claim comes through?..)

Don't get me wrong. There are huge benefits to both systems too. I have seen some excellent doctors in both the UK and US. I've had some superb treatment both sides of the pond. I've met genuinely caring and compassionate people who really DO want to help patients. But they sadly seem to be few and far between.

Just my $0.02. feel free to disagree.

* quite how you make use of being held down and having someone stick a tube up your nose, I don't know

Wednesday, 12 March 2008

"Live like you were dying..."

Recent events have got me thinking. The topic of death has come up in my life more than I care to think about over the last few months- kind of put things in perspective a little. Most of these people had no warning, no time to say goodbye, to prepare. I've been left feeling kind of numb an analytical over the whole situation (it's complicated and I won't go into it right now).

Death is a rather taboo topic. Something people seem scared of discussing. I don't know where the fear stems from- death is the only thing certain in life. Time is the only variable, and there isn't crystal ball you can look in and know exactly when/where/how. Perhaps that's what is so scary- how unpredictable it is.

It's made me think about how I spend my days, and how any given day could be my last. There's no way of knowing what will happen tomorrow, next week, in a month's time. I don't know how I would feel or react if I was told I was going to die- I don't think there's anything that can prepare you for that kind of news. I don't know... I know that if I died tomorrow, there are countless things that I would have liked to do, thing I have wanted to say, people I have wanted to spend more time with. I want to say that starting now it's going to be different, that I'll live each day as if it's my last- and as cliche as that sounds, I would want it to be true. The reality is that I'll probably never get around to saying those words out loud, making the time I should for the people I want to be with, following through with the plans/goals I have for my life.

I'll go back to burying my head in the sand, pretending I'm immortal and spend the rest of my days building up a mental list of "things to do before I die".

This all sounds rather morbid. I have no intention of dying anytime soon. But at the same time, neither do I see myself living forevermore. Life is really rather daunting. I like to take things as they come and focus on small, rather irrelevant, things rather than the panic about the potentially long and arduous future ahead of me.

It doesn't have to be arduous. It doesn't have to be daunting. In some ways, knowing I could die at any given time is a rather freeing train of thought to follow... But still, whilst I am alive and kicking, I feel I should be making more of my time here.

"Like tomorrow was a gift and you got eternity to think about
what�d you do with it what did you do with it
what did I do with it
what would I do with it?

Sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named fumanchu
and then I loved deeper and I spoke sweeter
and I watched an eagle as it was flying
and he said someday I hope you get the chance
to live like you were dying"

Wednesday, 5 March 2008

Reality is a difficult concept to grasp

I have a rather nasty habit of setting goals, without giving much thought to what happens once I achieve them. This in itself isn't a problem. The problem is that I focus so much on obtaining what I want, that there is, without fail, a huge anti-climax once I get to the point I have been striving towards. An anti-climax for me means I fall apart*.

I think that the key to lifting my depression has been by setting goals. Without anything to aim for, I flail wildly, not sure what to do with myself. Then I pin all my hopes on that one thing that is going to give my life meaning. It works. For a while. Then I work my ass off to get there before realising that maybe, it wasn't quite what I wanted after all. It wasn't what I thought. It wasn't as I'd planned. It didn't live up to my expectations. I spent so long fantasising about how wonderful everything would be, that it didn't occur to me that maybe my expectations verged on unrealistic.

For several years I lived and breathed for the chance to live in New York. I did *everything* to make it happen- then got there and my world came crashing down. My job was a nightmare, my apartment was hell, the city itself made me manic, and I returned home a quivering heartbroken wreck. Spent a month in bed, angry and frustrated with myself, the situation, before deciding that I had tried. I made it happen- I had a goal and I achieved it. I told myself that was a GOOD thing, and for the most part, I still believe that. I swore that I would return to New York, better prepared, and THIS time would be different. That happened too. I went back and it was different. I was different. My job was different. My apartment was different. The experience was different. Better? In some ways. Definitely not how I planned it, and that year in the big apple was disastrous on oh-so-many levels, and again, I returned, angry, frustrated and heartbroken.

I'm writing this now because I am planning on returning to New York in April. Third time lucky (or so I've been telling myself). Each time I've gone, I've learned SOMETHING. maybe this time it'll work out? And yet all day I've been planning for when it all falls apart and what self-destructive path I can then walk down. I've mentioned before that I live for external achievements. The qualification, the perfect weight, the right job, the best apartment...which goes against everything I stand for as a person. Those things don't matter to *me* and yet I have no other way to define myself. And the more I feed into the whole mindset, the more I set myself up to come crashing down again.

Reality is never going to match up to my fantasies, and that's a bitter pill to swallow. I want everything to be perfect. I want to be perfect. I just don't quite know how to define perfection.

* seems I spend a lot of my time "falling apart"... Superglue, anyone?

Monday, 3 March 2008

Whose Life Is This Anyway?..

"Serenity isn't freedom from the storm; it is peace within the storm."

I want to say that things are going really well. That life's great, my job is amazing, my social life has never been better and my creativity is soaring high, taking me to places I only ever dreamed of. None of that would be true. It seems that whilst things are going well on one level, on another, they are falling apart. I'm not sure exactly how one feeds into the other- whether or not there is some kind of correlation between things going well/me starting to crumble. My guess is that there are a hundred therapists out there that would like to say that I like to suffer and therefore "punish" myself when my life is not overly messy for once. My theory is that I am a terrible multitasker. Plain and simple. I can't do too many things at once. I can focus 100% on something and do it amazingly well, using my powers (A-HA!) for good or evil (for lack of a better word!) but as soon as I take on more than one thing, my focus switches onto my new/exciting project and I forget about the other balls I am juggling.

Example: When I've been in hospital and had nothing else to focus on but recovery, I do really well. I work hard, I do my affirmations, I eat properly, sleep well- basically become a master or everything which does not come second nature to me (for some unknown reason). Then I leave, and think, "okay- back in the real world, I'll get a job!". Fine in theory, oh-so-much harder in practice. Immediately my focus switches. MUST.EXCEL.AT.WORK. I work 24/7, go the extra mile, rush into the office 2 hours early, stay up late doing additional work. I stop sleeping ("I don't have TIME anymore") I stop eating ("far too busy to think about food"*) and eventually I wind up in a situation where I have to quit working and go back to basics. How To Eat 101.

I wonder how people do actually manage to *live*- to juggle work, social life, hobbies, relationships, responsibilities, etc, whilst also managing to get a decent amount of sleep, food, air. I feel rather dysfunctional in comparison. How they deal with the ups and downs of life without calling into work sick and walking until they crack bones in their ankles. How they deal with the hum-drum mundaneness that is so often *life* without daydreaming about starving themselves to death. How do people function? Or do they just NOT function in a slightly less obvious way?

Whose to say what's normal?

Maybe what I am doing is the same as everybody else. Maybe everyone else also feels the same inadequacies, inability to cope, utter panic and overwhelming anxiety at the future ahead of them. Maybe they just deal with it differently?.. Or maybe they don't deal with it at all? Maybe they just hope that things will work out? Maybe they are happy deep down with who they are and so nothing else really shakes them to their core.

Maybe my problem really is just that I base my entire self-worth on external aspects of life and believe that I cannot afford to do anything less than 100%- I don't matter as a person so if I stop eating/sleeping, it's not a big deal. Screwing up at work? THAT'S a big deal. Hurt somebody's feelings? DISASTER. My life really isn't about *me* at all.

* the irony is, as anyone who is familiar with the
Minnesota Starvation Study will know, a starving body/mind thinks of nothing BUT food