so I wrote this thing over on the FEAST blog…
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When I was in treatment we did a lot of motivation building exercises. We talked about why we wanted to recover. We made a lot of lists – lists of all the good things about recovery and all the bad things about being sick, all the things we would be able to do when we were healthy, all the things ED had taken away from us, all the ways our illness hurt our loved ones, all the things ED made us lie about. Lots and lots of lists. We wrote out what a day in our life looked like now and how it would be different in recovery. Then we made action plans targeting each behavior we wanted to change, like really detailed contingency plans of how to access support and work through urges and implement coping strategies.
And I was really fucking good at those lists and plans. Like gold-star, top of the class, teacher’s pet kind of good. And yet I wasn’t recovering. In fact I was getting more and more sick. This disconnect seemed to really mystify the professionals. I said I wanted to get better. I acknowledged that being sick sucked. I knew what I needed to do. So what gives? Was I lying when I wrote pages and pages about how much I wanted to be recovered? Was I just bullshitting my way through treatment? Filling in the blanks in the action plan worksheets all the while counting down the minutes till I would go home and binge and purge and starve?
Well sort of. But its a bit more complicated than that in a way that I couldn’t articulate at the time. I was talking to someone recently who was frustrated that their loved one could say all the right things but wasn’t acting in a recovery-oriented way. I used this metaphor to try to explain it to them.
Imagine someone asking you if you wanted to be able to fly. You’d probably say yes right? Imagine them asking you to make a list of all the things that would be totally amazingly life-changing and awesome about being able to fly and all the things that suck about having to walk instead. Actually imagine you can’t even walk – imagine you can only crawl around and then compare that to flying. I bet you can come up with a lot of reasons why you would like to stop crawling and fly instead. Now imagine writing a plan about how you are going to learn to fly. Maybe it looks something like this:
1. find a flying school and sign up for classes.
2. attend flying classes
3. practice flying every day
4. read about how to fly
5. visualize yourself being able to fly
6. remind yourself how awesome life will be when you can fly – write out a list and carry it around with you so you have it when you are tempted to stop trying to fly
7. ask friends and family to support you in learning to fly, to remind you to practice and cheer you on when make progress and encourage you when its hard.
Ok so now you are going to do all of those things right? You are going to devote time and effort everyday to learning to fly. Right? Because it would be SO AWESOME. Because YOU DESERVE TO BE ABLE TO FLY. Right?
Wrong. You aren’t going to do that because its not going to work. You are never ever going to be able to fly no matter how long your lists are or how detailed your plan is. Its just not going to happen. The lists and plans are a purely academic exercise – interesting to think about maybe but not rooted in reality.
Recovery is a bit like that. Only harder and scarier and more painful. Sure if I could have snapped my fingers or clicked my heels and all of a sudden been RECOVERED I totally would have. But I didn’t believe, not with a single fiber of my being, that it was actually possible. So I wrote the lists and I made the plans and it was all a lovely fantasy. But no fucking way was I going to go throw myself off a cliff hour after hour, day after day, with no safety net in the hopes that eventually I would stop crashing into the ground and be able to fly. I couldn’t understand why everyone thought I should be doing that. It didn’t make any sense.
I’ve written before about how important caregiver and clinician confidence (real or faked) in recovery is – how they have to be able to hold the hope for the sufferer until the sufferer can hold it themselves. Keep showing that hope and confidence but don’t expect them to believe you. Know that what you are asking them to do feels impossible and painful and stupid and pointless. Know that you are taking them up to the top of that cliff and throwing them off and that your promises that one day they will be able to fly sound hollow and insane.
I know how hard it is to believe in recovery when you are sick or in the trenches fighting alongside a loved one and I’m pretty sure there is nothing I can say that will change that. But I’ll be damned if I’m not going to keep trying because I can fly now and its pretty fucking cool.
There’s something I want you to know: It is not too late. You are not too broken. There is no point of no return.
I did some pretty “bad” things when I was sick. Gross things. Embarrassing things. Dangerous things. Things that hurt other people. Things that went against my values. Things that I had sworn I would never ever do. And I remember feeling every time my behaviors escalated, that it was one more nail in my coffin, one more strike against me, and that eventually I was going to have done so many “bad” things that I would be a lost cause, that I would have gone too far and there would be no returning to the land of the living. I was sure that there was no way to pick up all the pieces I had shattered into and reassemble them into anything that resembled a real person.
I want you to know that I was wrong. I am here. I am living a real, full, happy life. I was not too broken, too bad, too fucked up. I was not un-fixable. And neither are you. I was pretty far gone and I came back. And you can too. As long as you are alive, recovery is possible.
Likewise, if you are in the beginning of your recovery journey, I want you to know that no matter how hard it is, I promise you, it does not mean that you are not on the right path. Recovery will at times be harder than you can imagine. And you will think that this is not what recovery is supposed to look like. Your illness will tell you that this amount of struggle is not normal, that it means you will fail at recovery and that you might as well just give up now. That is a lie. No amount of struggle is indicative of the fact that you cannot recover.
This is a message for family members and care givers too: your loved one is not beyond help. No matter how many interventions have “failed” in the past. No matter how long they’ve been sick and no matter what their behaviors are, they are not too sick to get better. Your confidence in this fact is a perhaps the most important thing you can give them. Show your loved one that you absolutely believe that they will get better. Lie if you need to. Tell them you have a plan b, c, and d in case plan a doesn’t work. Even if you don’t. Tell them you will never give up. Even if sometimes you want to. Tell them that other people in their situation have recovered. Even if you’re not sure. Please know that you’re loved one needs to believe that you believe this. Even when you don’t. And do not give up on yourself. Nothing that has happened in the past means that you cannot become an active part of your loved one’s recovery. No matter how many times you feel you have failed them, it is not too late to get it right. Be honest. Tell them that you know you got it wrong in the past, that you didn’t understand their illness, that you got bad advice from professionals. Tell them that you know more now and that things are going to be different. Tell them that you are not giving up, that you will never give up.
There is no point of no return.
2013 was a hard year guys. It had some great moments and some pretty shitty ones and all in all I’m not sad to see it go. My dog had cancer (super shitty although he is ok now), we got married (awesome but super stressful), I struggled through three more quarters of school (really rough but at least I am closer to being done), my husband decided to make a major career change and apply to graduate school in a new field (we feel good about this but it is stressful and means we don’t know where we will be next year), and I dealt with several episodes of depression and severe anxiety and some lapses into restriction (super shitty although I am doing well now).
2014 is going to be a big year too. I (knock on wood) will graduate college and we will most likely be leaving Seattle. Other than finishing school, my only real goals for 2014 are to keep moving forward with recovery by dealing with some lingering issues in therapy and being more honest with my husband when I am struggling. It would be great if I started blogging again, got more exercise, and went back to volunteering at the animal shelter but I’m not putting too much pressure on myself about those things.
Happy new year everyone!
I am taking an abnormal psychology class this quarter and its pretty terrible which makes me angry and frustrated and sad (and we haven’t even gotten to eating disorders yet!). A large portion of the curriculum seems to be dedicated to reducing stigma around mental illness. Which is great (although not really what I think an abnormal psych class should focus on). Its the way the professor is going about it that is getting me all stabby. Like many other mental illness awareness/stigma-reduction campaigns the focal point seems to be the idea that mental illness is not that different from normal emotional experiences and therefore that people who suffer from mental illness are just like everyone else and that everyone can understand what having a mental illness is like.
Mental illness is not just an extreme version of normal emotion and behavior. Yes, sometimes the outwardly visible symptoms of a mental illness can appear as exaggerated versions of normal behaviors but the emotional experience of the sufferer cannot be understood in those terms. Eating disorders may look like extreme dieting behavior but let me assure you having an eating disorder IS NOT in any way like the experience of dieting. You cannot take the experience of a non-eating disordered person who diets and has “normal” body image issues and multiply it by any order of magnitude and get the experience of an eating disorder. Depression is not just feeling extra sad. Anxiety disorders are not just feeling extra worried. I believe this holds true for all mental illnesses.
Now the issues of whether people with mental illnesses are just like everyone else and can lead completely normal and successful lives is a little more nuanced. I absolutely believe that with good treatment most people can go into remission from their mental illness. I like to think that I am living proof of that. My life looks – and for the most part is – very normal. And yet for many years I was completely unable to function in any way that resembled normality – unable to hold down a job, stay in school, have relationships, feed myself properly, at times unable to even get out of bed and get dressed. And for some people with mental illness, their lives may never get back to normal. When we harp on and on about the idea that people with mental illness can be totally “normal”, what are we implying about the mentally ill people who can’t? That if they just tried harder they could overcome their illness! and be normal!? To me it just reeks of victim-blaming. Because, honestly, the difference between me and the homeless, schizophrenic man on the street corner is not that big. My parents were willing and able to pay for airplane tickets home from South America and pay rent on apartments when I couldn’t. They did a lot of things wrong but they never told me I couldn’t come home. That’s all. That is the difference. There are moments I think back on when, without that financial support, without a home to come back to when I had nowhere else to go, I would have ended up on the streets, on drugs, psychotically depressed, doing god knows what. The people for whom that becomes the reality do not deserve to be thrown under the bus in the name of making the general public feel more comfortable with mental illness. These people do not deserve to have the burden of the stigma thrown entirely on their shoulders for the benefit of those of us lucky enough to come out the other side and be able to pass as “normal”.
So, no, I do not believe that people who have not experienced mental illness can truly understand what it is like. For some reason that is not entirely clear to me, this seems to be a belief that offends a lot of people. I am not saying they have never experienced anything painful or hard. I am not saying that they cannot learn about mental illness and effectively support people who do suffer. I am not saying that they cannot become wonderful, compassionate clinicians. I am not saying that loving someone with a mental illness is not a challenging and painful experience in and of itself. What I am saying is that YOU DO NOT KNOW WHAT IT IS LIKE. And that’s ok.
We do not talk about other illnesses in this way. People do not claim to understand what it is like to have cancer because something bad happened to them once. We do not conceptualize cancer as a really really exaggerated version of the flu. We do not think that our ability to treat people with physical illnesses with compassion is tied to our ability to relate to their experience. Treating physical illness or supporting someone who is ill does not require us to KNOW exactly what they are going through. We need to stop doing this with mental illness. We need to encourage an educated and compassionate view of mental illness that is not relient upon this idea that its “not that different”.
The immense power of language and how it affects how we think about eating disorders (and mental illness in general) is something I spend a lot of time thinking about. Dr. Insel, head of the National Institute for Mental Health and one of my very favorite people ever, wrote about this in this blog post. This is deeply personal subject for me because the first time I heard EDs referred to as biological brain disorders I very nearly wept with relief. It was breath of fresh air, a ray of light, and any other cliched term you care to use. In that instant my understanding of what had been happening to me for the past seven years began to shift. No, it didn’t cure me. I didn’t even start getting better for several more years. But I began to stop blaming myself and my parents and started to believe that just maybe there was hope for recovery. It led me to the information I needed to eventually find recovery. Those words changed my life.
Language is that powerful.
But is it good enough to just use the right words? Does our responsibility end with word choice? Is our job done once we have spoken/written the words? I would say no. I would say that choosing our words carefully is only the tip of the iceberg. Because, really, what we actually say matters very little in comparison to how people interpret our words. We can use the most scientifically accurate, most politically correct, best-in-every-possible-way, language and if our audience doesn’t understand what we mean it doesn’t do anyone any good.
When practitioners make comments about eating disorders without thinking about how they are going to be heard, they run the risk of doing real harm. When they say that bulimia is not as serious as anorexia because the mortality rate is thought to be lower, they need to think about whether a parents hearing that might back off on getting their child help. When they say that, unlike anorexia, bulimia is thought to be culture-bound without clarifying that that “does not mean that genes do not influence BN or that they influence BN less than AN“, they perpetuate harmful myths. When they say that ED patients are non-compliant or manipulative or untruthful, perhaps they don’t mean to imply that these are personal failing of the patient, but you can be sure that that is how patients will hear it. When they cite research that anorexic patients report more displays of negative emotion from their parents during childhood without clarifying that they mean it as an illustration of the patients’ tendency to misinterpret other’s emotions, they sure as hell sound like they are blaming parents.
Often I hear people arguing that we should avoid language that is easily misinterpreted even if it is actually the correct language to use. This comes up frequently in regards to the term “biologically based brain disorder” because it has been shown that, amongst the general public, this language actually increases stigma around mental illnesses. I am NOT saying that we should not use accurate language because of the risk of it being misunderstood. I am saying that we must be aware of this risk. We much always speak with the least educated or most vulnerable audience member in mind, especially when we put our words on the internet, where we have very little control over who the audience will be. [If you are writing a blog for clinicians or parents, please please please be aware that sufferers will read it too.]
I will be the first to admit that I am not always mindful of this. I don’t always take the time to explain the terminology I use and too often assume a common knowledge base that may not actually be there but I am going to try to be better. Because if the only people who understand what you are saying are the people who already understood the idea, what good are you doing?