No easy answer: Anorexia and the right to die

A few people have asked about my opinion of this case in New Jersey where a judge ruled that a 29 year-old woman cannot be force-fed against her wishes; instead she will receive palliative care. Honestly, I have no simple opinion on this matter. It’s way too murky for me to say one way or another whether or not this is the best choice. I would love to be the optimist who says, “Anyone is capable of recovery, this woman included,” but do I really believe that? I’ll admit my overall opinion of recovery has shifted over the past several months. I used to think that everyone had a kind of a pre-destined “recovery potential” that dictated the maximum level of recovery they could ever achieve given the best case scenario. I now see things a little less black-and-white. I used to think this was about as good as it would ever get for me, and now I think differently. I believe I’m capable of more, and I hope to get there one day.

Some of my closest friends have severe eating disorders and I can’t imagine myself ever giving the “okay” for them to give in and settle for palliative care at such a young age. Part of this has to do with knowing the profound effect that malnutrition has on the brain. It’s pretty much impossible not to be intensely depressed when you’re starving. However, I’ve watched people I love make dramatic transformations through re-feeding– not just physical transformations but mental and cognitive transformations as well. I’ve also experienced this myself. When you’re drastically underweight and malnourished, simple food will have a much bigger impact on your mood and thinking than any antidepressant will (and actually, most antidepressants probably won’t work at all when your body is that compromised).

On the flip side, anorexia is an illness not unlike many physical diseases that, when determined to be terminal, have led to approved physician-assisted suicide. Have I ever felt defeated enough by my illness to wish death upon myself? Absolutely, more times than I can count throughout the course of  my eating disorder. However, I honestly don’t think any judge would have granted me permission to die (or to give up on treatment) had I asked for it at the time. As sick as I was at times, I had never done such irreversible damage to my body that it would have seemed warranted. Obviously I don’t know the details of this woman’s case, but I’m guessing her body has deteriorated to a degree that they believe she has little chance of ever making a full physical recovery. Re-feeding can be extremely dangerous when a person has gotten to such a grave physical state, so much that many hospitals won’t admit patients who are below a certain BMI. The places that can treat patients with single-digit BMIs or serious medical complications is very limited. For all I know, this woman may have exhausted all her options and is now just looking for any kind of relief– relief that only palliative care may be able to give her (I also can’t help but note that the article states she suffers from binge/purge type anorexia, which, at least in my experience, is like double the horror).

It’s depressing for me to even be writing about this. I’ve watched more than a few people die from this illness. Some of those people had clear wishes to die and others died very unexpectedly. I worry about my current friends and acquaintances with eating disorders every single day. I hate that this illness takes so many lives, whatever the circumstance, and I wish everyone could be as lucky as I’ve been to experience such a life-changing shift in perspective on the prospects of recovery.

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Therapy for the therapist (and everyone else too)

Tonight I saw a new therapist for the first time– someone who miraculously takes my insurance. I pay just a small co-pay for each visit; it’s kind of amazing. Of course I’ve only seen her once, but I think I’m really going to like her. Our first session together was different from most if not all other “first sessions” I’ve had with therapists before. We didn’t do a long detailed assessment where I felt pressure to spit out my entire life story in a span of 50 minutes. We didn’t launch right into “How are we going to fix your eating disorder/depression/anxiety?” She just let me talk about what brought me back to therapy.

It’s been over two years since I’ve been in regular one-on-one therapy. My decision to go back was largely motivated by my recent plan to apply to MFT programs and finally pursue my own dream of becoming a therapist myself. Most programs require that you be in some kind of personal therapy for at least a portion of your time in the program. Even if they didn’t require it, most agree that it’s the smart thing to do. I guess I wanted to get a head start seeing as I’m already experiencing such a wide array of feelings since making the decision to go back to school.

Nearly 12 years ago during one of my inpatient stays for my eating disorder, a fellow patient’s father came up to me during one of the weekly “Multi-family” groups and started making conversation. When he asked me what I wanted to do with my life, I said I ultimately hoped to become a therapist. When I said this he (no joke) started cracking up laughing. “A THERAPIST?!? But you’re… here. In a mental ward. How IRONIC!” um, no not really? It was weird to me that this was apparently the first time he had heard of someone with “mental issues” bad enough to be on a “mental ward” going into the helping profession. Hello nearly every person I know who has pursued this path?

This man had a strange way of saying things, but it was far from the last time I heard someone allude to the assumed distinction between “the therapist” and “the patient” as if they could never be one and the same. It makes me sad that therapy in general is still stigmatized at all. Going to therapy does not make you crazy, mentally ill, or broken. A couple weeks ago I was out with some people from work and we somehow ended up on the topic of therapy. The resulting conversation uncovered that most of us have been or are currently in “therapy.” And guess what? We’re all accomplished, intelligent, hardworking individuals. Kind of amazing.

Data Collection and Analysis: Version Real Life

For the past month, I’ve been consumed by an idea that others might find crazy (and that I found crazy at first as well). Ok, brace yourselves for this… This crazy idea would involve me going back to school to become a licensed mental health professional, most likely via an MFT or MSW program. This idea was/is crazy because:

– As I’ve mentioned many times before (even in this very blog), the clinical route was never for me. Or so I thought.

– I already have a master’s degree (in experimental psych, aka the research/stats side of psychology) that took me long enough to obtain thanks to my crazy maze of a life. I also finally have a job that I enjoy that also took me quite a while to achieve thanks to that same crazy maze of a life. So… why the need to complicate things?

For the past six months I’ve been talking a lot about eating disorders with a former colleague to help her understand them better. It’s been a really great experience– not only have I helped her gain a deeper understanding of what is a very complex disorder, but I’ve also learned some news things about myself. For example, I’ve learned that I’m capable of providing useful knowledge to others based on my own lived experience. This may sound really simple and obvious, but it was a pretty big revelation for me.

About a month ago she brought up the topic of me pursuing a career in therapy (particularly therapy for eating disorders), even though she knew it was something I had in the past rejected. At first I straight out rejected the idea again, saying it was not for me and it would never work, for a million reasons. To be honest, it surprised me that anyone would even suggest this as something for me to seriously consider, because at the time I still saw myself as this crazy f#cked up person and assumed everyone else did as well. And yet, here was this person who I really looked up to and admired telling me that she could totally see me being an amazing therapist. I almost cried tears of joy. Almost.

Just a brief recap of my career aspirations, my original goal back when first choosing psychology as my major as a college freshman a million years ago was to became a practicing therapist. At the time I actually hoped to get my PhD and become a clinical psychologist. However, as the years went by and my eating disorder grew stronger and stronger I realized this was a pretty dead end goal for me. I was never going to be mentally stable enough for that to become a reality, so I switched my focus to research instead. I got my master’s in experimental with the intention of going directly to a PhD program in clinical psych, although my focus was going to be almost purely research/teaching. I mean yeah, I would be getting clinical training whether I liked it or not in a clinical PhD program, but my end goal was to be a researcher; I was only looking to clinical programs because my research interests were clinical. (This all makes 10x more sense if you’re familiar with this field, otherwise you’re probably bored and/or confused to tears right now, haha). Anyway, I ended up frantically withdrawing all of the PhD applications I sent out 3 years ago– for several legit reasons, but also, if I’m honest, because I didn’t think I was stable enough to handle such a grueling career path at the time. I had nightmares of making all of these drastic life changes in pursuit of this path (e.g., cross-country moves, going into more debt) only to have it all come crashing down due to me falling headfirst back into my eating disorder and depression. I mean, let’s face it, that had happened several times before already. So, as the story goes, I put a halt to that plan and found work in the field instead, which is how I ended up where I am today, in a job I genuinely enjoy and feel good about.

Even though I finally feel good about what I’m doing, I’d be lying if I said I never wondered what could have been or even what could still be. Over the past couple years, as I’ve made once unimaginable progress with my eating disorder, I’ve found I’m more and more eager to  share what I’ve learned in hopes of giving other people hope that a better life may very well exist for them as well. I started this blog in March in hopes of reaching others and I’ve been talking a lot recently to fellow sufferers about how I was able to make changes that I never thought I’d be able to make.

Over the past month, I’ve reached out to many people from various parts of my life, past and present. I’ve contacted old therapists, co-workers, bosses, friends, etc. I’ve talked to people currently in the clinical field as well as people who started down that route who ultimately went in a different direction. I’ve asked them to share their own experiences with me, and perhaps a bit selfishly, I’ve asked them what they think about me ever succeeding in such a role. I really wanted to get a diverse and balanced perspective, and that’s exactly what I got. While everyone I talked to was supportive of me choosing to go down such a path if I so ultimately chose, some were more optimistic than others and many offered their real concerns and hesitations. This is exactly what I was looking for– real, honest feedback! The problem is, I’m now left with the difficult job of analyzing it all and deciding what the final conclusion is. And I know it’s not that simple. This is not my work as a research analyst; life choices like this are not a simple matter of some nifty data analysis and reporting.

I’m not looking to start a whole new career. As I’ve said before, I truly do enjoy and find fulfillment from my current line of work. I get to use some of my best skills to make data meaningful to people who can then use that data to inform practice and programs. My goal would not be to replace this but to supplement it with a new clinical skill-set. I guess ideally I would see myself continuing to work in the non-profit research sector while also holding a part-time private practice. The agency where I currently work is rife with people who maintain small private practices outside of their full-time jobs so I know it’s possible, I just wonder if it’s possible/feasible for me?

Now, I’m a very practical and risk-averse person, so to say I’ve carefully examined all the messy logistics and financials of this idea would be an understatement. I’ve kind of been obsessing over it for the past month. 😉 It would be a lot of work, none of it easy. There are programs that would allow me to continue working full-time through the first year or so (before I’d start my supervised clinical hours), but it would definitely take some adjustments. I’d have to take out more student loans, and somehow find the time and financial space to complete all my internship hours to eventually become licensed (i.e., to become licensed as an MFT you need to accumulate 3,000 supervised hours, most of which are usually unpaid while you’re still in school and very low paid once you have your degree). If I applied to programs soon for fall 2017 admittance, I’d realistically be looking at about 3 years of school and another 1-2 years before becoming licensed and able to start building my own practice, so about 5 years in all (and 6 years from now). I’d probably be 38 before I’d even have a chance of starting to live that life I’m so ideally imagining– working full-time in the non-profit research arena while also maintaining a small but thriving private practice. If it all worked that way though, it would totally be worth it to me. Hell, 38 is not that old. I’d still have several decades of working years left (and let’s face it, I’ll probably never be able to afford retirement so I’ll be working until I’m dead 😉 ).

Of course, I’m a pessimist by nature so it’s really hard for me to picture any of this working out even slightly as planned. I’ve come up with pretty much every imaginable reason why it wouldn’t work, and yet somehow, I haven’t been able to fully release the idea from my brain, which I’m starting to take as a sign that I must really want this on some deep level.

Now before I get too carried away with this, I should mention the pretty huge part that I haven’t really touched on yet, which is the question of whether I’m even in a place to be considering this, mental stability wise. This idea originally focused on working specifically with eating disorders, which was perhaps why I initially had such a strong pessimistic reaction to it. Yes, I’m doing a million times better than I have been in the past, but I’m the first to admit I’m not fully recovered, and may never will be. As someone who’s been exposed to quite a few “recovered” ED therapists, I know firsthand how important it is that these people be actually recovered. While people with lived experience have the potential to be great therapists, I’ll admit I’ve come across more people in the eating disorder world who were actually worse therapists because of this. They say or do quite triggering things without even being aware, or they inaccurately assume things about their clients’ eating disorders based on what they think is a universal experience. They fail to recognize the incredibly unique experience of each individual. When confronted with this these things, they often get defensive and even angry. I think a big part of my reluctance to consider this a serious career possibility until now has been a fear of being like these people. Yes, I want to help people and I truly believe my life experiences could be an asset, but I also know there’s a huge risk in assuming that to be true.

I would never, ever want to risk being a negative influence on my clients, so I quickly decided that I’d have to commit to being more in recovery than I currently am if I ever planned to work with clients with eating disorders. Part of this would mean finally getting to an actual healthy weight (not just “better for me” which I currently am and have been for a while, but like, actually a legit non-underweight BMI). Could I do this? I think I could, but who really knows? At first the thought of this actually made me excited… like I finally had a reason or “excuse” to loosen up my control a little bit. I could allow myself to eat more, and even if I gained a little weight, it wouldn’t be the worst thing in the world, because I’d be doing it for a greater purpose. Would it really be that easy though? Is it really wise to get better for the sake of others, especially others who I plan on legitimately helping through this very issue? And what about my own personal philosophy that I’ve been preaching for the past six months, ever since starting this blog, that “full recovery” may not be for everyone and that’s okay? So now I’m saying it actually is necessary, at least if you want to help others? Or is that even what I’m saying? Who’s to say that getting to a healthy weight would mean I was magically 100% recovered anyway? And would that be okay?

These are all complicated questions that probably no one can answer for me. The bottom line is that if I do pursue this path, I would not limit myself to the treatment of eating disorders because I’m not fully convinced I’m capable of being “recovered enough” in that area. It’s a specialty I would ultimately love to pursue, but I’m also not willing to risk the health and safety of others to make it happen. While I truly do think that starting down this path would help me take my own recovery to the next level, I know that’s not the reason to pursue anything. I would be doing this to help others, and if I happened to help myself in the process, great, but at the end of the day my goal would be to help people in the way I best felt I could, whether that be specifically with eating disorders or other issues.

Does this all sound completely out there and unrealistic? If it does, feel free to tell me. I’m still on my quest to gather as much information as I can about the feasibility and soundness of this plan. I don’t do well with indecision and the unknown so I’m hoping to make a decision about whether or not to take the next steps to make this dream a reality within the next week or so. I know the real decision is mine, but I also really enjoy and appreciate hearing so many different perspectives from the people whose opinions I value most. If you don’t feel comfortable replying directly to this blog or on Facebook, feel free to message or email me privately. I love data! The more the better! 🙂

 

“Welcome. You’ve got mail.”: Recalling the early days of online support forums

I met my best friend (K) online. We “met” on an eating disorder-specific message board in late 2008. About a month into our friendship we were already corresponding on a daily basis, through emails, texts, and phone calls. We didn’t meet in person until nearly four years later when she came to stay with me for five days shortly after I moved to Los Angeles. We were scared it might be weird, but it really wasn’t. Today, seven and a half years later, she remains one of my closest and most loyal friends.

I used to be afraid to tell people how we actually met. I even lied to some people and told them we met at gymnastics camp or at a treatment center. Both of these were actually plausible as we were both into gymnastics as kids and we both had been to some of the same treatment centers, although never at the same time. I was afraid that if I was honest about having her met online, especially on an eating disorder site, people would get the wrong idea. You’ve probably heard about the “pro anorexia” movement and their large presence online. I was never into any of that, and neither was K. Still, people hear “online” and “eating disorder” and assume you must be talking about some graphic pro-ana site where you drool over emaciated pictures and trade tips on how to lose 15 lbs in 3 days. To people with actual eating disorders, this assumption is pretty insulting. I know others may disagree, but I don’t consider those people to have real eating disorders. They’re struggling with something, surely, but that something is usually completely unlike what I and most others like me have struggled with. I don’t want to give too much attention to this topic because it’s pretty irrelevant to what this blog is about. Anorexia is not a “lifestyle” that anyone should strive for and people who treat it as such are doing everyone a disservice by perpetuating ridiculous stereotypes.

Moving on… I’m no longer ashamed to admit where I met K. I wanted to write about my many positive experiences with online connections and support because so much of the talk around this topic is about the negatives. The truth is, the online world is a completely different beast than it was 15-20 years ago. Both K and I agree that what so many people with eating disorders do online today in the name of “support” is not at all conducive to real recovery, and is in many cases harmful. I’m not talking about pro-ED forums. I’m talking about the ever-expanding “recovery community” that exists on sites like Tumblr, Instagram, and to a lesser degree, Facebook. I want to keep the focus of this blog on the positives of online support, so I’ll save my discussion of the current Tumblr/Instagram situation for a future entry.

My first encounter with eating disorders on the internet was in late 1997 when I was 13. One of my teachers had recently picked up on my eating disorder and turned me into the school nurse, who then got the school psychologist and my parents involved. It was not a fun time for anyone. I had been secretly dealing with stuff for a while, but this was the first time it was “exposed” and people were labeling it as anorexia, or an eating disorder. That alone scared the shit out of me. I knew what anorexia was and I was convinced that was not what I had. I was nothing like the girls in the Lifetime movies about eating disorders. I didn’t start losing weight to look good in my prom dress or to impress a guy. I didn’t eat 3 sticks of celery a day or faint dramatically after a run. That was not me.

I knew there was something weird/wrong about me though, so I started doing my own investigating. This was before Google, but I managed to find quite a few resources, such as the AOL “support forums” dedicated to eating disorders. Yes, AOL; this was 1997. It wasn’t long before I realized how many people out there were dealing with very similar struggles. There was a close-knit group of “regulars” who I quickly got to know well. We were girls, women, and men of all ages from around the world, but we had no problem relating on the level of our shared struggles. I started waking up early so I could “check the boards” before school and more often than not I’d go straight to the computer after school and spend several hours catching up. Some would call this isolating, and yes, it kind of was, but consider that before this I would spend this time completely alone and depressed in my room. The few friends I had from school were not people I could talk to about this, and I never wanted to burden my parents. I started seeing a therapist but it was years before I trusted her enough to really let her know what was going on. My “boardies” as we so cheesily called each other, were my biggest confidants.

AOL

The following summer I went to a routine doctor’s appointment only to be told I was being admitted to an inpatient facility that very night. They gave me an hour to go home and pack my bags. To say I was terrified would be an understatement. This would be my first encounter with out-of-home treatment and all I could think about were the horror stories I heard from my friends online about these places. “If you refuse to eat, they’ll put a tube up your nose and feed you high-calorie liquids all day. They want to make you fat. You can’t do anything unsupervised, even take a shower or go the bathroom.” This was my absolute worst nightmare; I begged everyone to give me one more chance and not make me go to such a prison.

Once I realized it was a done deal I knew I had to “check my boards” one last time before leaving. As soon as I got home I threw a bunch of clothes and (unbeknownst to me at the time) contraband in a bag and ran down to the family computer. Lucky for me, one of my closest “boardies” was on good old ICQ, which was a super old-school instant messaging system for all you youngin’s reading this. I told her what was happening and she assured me it would be okay. She told me not to believe all the horror stories about treatment; it wasn’t all that bad. Maybe I’d even get something out of it. And hey, I was finally going to have “permission” to eat! I made it through that first admission, I believe, partly thanks to the support I knew I had back home via my snail speed dial-up.

Through the years the forums themselves came and went, but I continued to find similar online support. The longest stretch of time I continued visiting any particular forum was from about 2004 to the very recent present. Many of the people I met on this board became close friends, including K, the person I consistently refer to as my best friend. I gradually stopped visiting this board over the past year or so, mostly because I found it had changed greatly from the board I originally fell in love with. Even without regular visits to the actual forum, I still remain connected to many of the people I met on this board. I actually have plans to meet up (for the first time in-person) with a long-time friend from this forum soon, as she happens to be in town.

I won’t pretend my experiences with these forums were always 100% positive. There was the inevitable competition and drama you find in any group of disordered individuals. There were the compulsive liars, the manipulators, the bullies. We also witnessed the unfortunate deaths of many; that’s what happens in a community of 900 people with eating disorders and other mental health issues. However, none of this was any different than what I would have experienced had I known these people “in real life.” That’s what a lot of people don’t seem to understand. The way we conversed online in these contexts was completely different from how people converse online today. Today people do nearly everything from their smartphones. We’re connected 24/7 and it’s not uncommon to be replying to emails in the car, in line at the store, or even while simultaneously holding several other conversations. We’re not just sending each other words but pictures and videos, often highly edited to ensure everyone sees us in our very best light.

“Back in the day,” I remember staying up until 3 and 4 in the morning on my clunky laptop having in-depth conversations with people. We didn’t have constant internet access that followed us everywhere we went. Connecting to others through this channel was a truly special and treasured thing. I got to know people online better than I knew most of my day-to-day acquaintances from school, work, or other “real life” places. I may never have met 80% of them in-person, but they were my core lifeline over many years of depression, hopelessness, and interspersed crises.

These days, most of my interaction with people is through “real-life” scenarios. I’m thankful for that because it means I’ve finally built a life for myself outside of my disorder. I no longer have to rely on secret online forums to be validated, understood, and engaged. This wasn’t always the case though, and I will never forget “where I came from” and all of the good that came from those avenues of support.

Confronting suicide: Breaking the silence around one of mental health’s biggest taboos

A couple months ago I had the wonderful opportunity to participate in the Applied Suicide Intervention Skills Training (ASIST) through my workplace. This was an intensive two-day training designed for anyone (i.e., not just mental health professionals) who wanted to learn how to deliver “suicide first aid.” In the training we learned very practical intervention skills that were based on a scientifically-proven model. One of the best things about this training was that it also allowed for honest, candid conversation about some of the controversial aspects of suicide. We openly discussed questions like, “Is suicide morally wrong?” and “Is suicide always preventable?” The discussions had me reflecting back on a lot of the attitudes I’ve encountered over the years. People tend to have very strong feelings about suicide, and I’m not here to tell anyone their opinions are wrong. I merely want to add some more context, based on my personal experiences, to some common ideas.

“Suicide is a selfish (and even, malicious) act.”

Some people really do see suicide as a completely selfish and/or even malicious act. I understand this. I actually used to believe this before I ever experienced serious suicidal ideation myself. A girl I went to school with hung herself in her front yard; her parents found her dead that way as they pulled in the driveway. This event really rattled me, and I found myself really angry at this girl. How could she do that to her family? I knew she didn’t have a great relationship with her parents, but this? It seemed so… evil. 

Fast forward a couple years and my stance really shifted. Things with my eating disorder were not getting better. Actually, they were getting a lot worse, even after countless rounds of “treatment.” I truly felt like I was destined to suffer like that forever. In 2010 I made two serious attempts to take my life and looking back I can honestly say that hurting anyone but myself was the furthest thing from my mind. I actually wasn’t in any sound state of mind; I was at a breaking point with my eating disorder. I used to describe it as “not being able to keep up with my behaviors.” There comes a point when the disease really overtakes you and you feel entirely controlled by it. I was running almost completely on adrenaline, starving and exercising all day and then binge/purging all night until the early morning hours. I slept maybe 2-3 hours a night but only when I finally passed out from exhaustion. I hated every single minute of it, but it had become this compulsive interminable routine that I could not stop. My life as I once knew it was already over, because I had no time or energy to devote to any of the people or things that once meant something to me. I saw absolutely no way out other than to kill myself. I didn’t even feel like a person anymore. I was of no value to anyone anymore (so I thought), so there was no point in sticking around.

I don’t doubt there have been people who have killed themselves with the intent of hurting others, but this certainly isn’t the norm. Many people who attempt or complete suicide are under the influence of any number of things that have significantly impaired their judgement. I’m not only referring to substances like drugs and alcohol; it could also be severe depression, starvation, sleep deprivation, trauma, psychosis, etc. I can tell you that after a few weeks of improved nutrition, sleep, and medication adjustments in the hospital I could no longer identify with the person who had attempted suicide just a few weeks prior. My eating disorder hadn’t gone away, and I wasn’t cured of my depression, but my brain was functioning well enough to be able to see things more realistically. I could see myself as a person again, a real person with real people in my life who cared about me.

“People who are serious about suicide won’t talk about it.”

This may be true for some, but it certainly is not always the case. I know in the worst of my illness I was constantly talking to my therapist about death and wishing to die. I think I probably talked about it so much that she eventually stopped reacting like she had in the beginning. I think my attempts really took her by surprise because she was so used to me just talking about it but never acting. I don’t blame her at all for not “predicting it,” I just think it’s worth pointing out that just because someone has talked about suicide for months or even years without acting, that doesn’t mean they won’t at some point reach their breaking point.

Related to this, I think it’s important not to assume that just because someone has “failed” to complete a suicide once or even several times, this doesn’t mean they weren’t serious in their intent to die, nor does it mean they won’t “succeed” in the future. I’ll never forget the time I saw my psychiatrist for the first time after my string of suicide attempts in early 2010. “Well, you’re not very good at this are you?” He said this with an obnoxious grin on his face. And yes, he had a very odd sense of humor. “Well,” I replied, “I’m clearly not very good at this ‘life’ thing either, which is why I keep trying to end it. Maybe you could help me with that instead of mocking my very real suicide attempts?” Actually, I don’t remember what I said at the time, but probably not that. 😉 This response came to me after the fact, like the best comebacks usually do.

There is no “typical suicidal person;” some people openly talk about their thoughts and plans, whereas other people give no outward signs there’s a problem at all. A person who talks about suicide may not be in immediate danger, but he/she is giving you information that should not be ignored.

“All suicides are preventable.”

I wrote the following in December 2013, after a series of eating disorder-related deaths (mostly by suicide) occurred in one of my communities:

    Over the years I’ve unfortunately witnessed many friends, friends of friends, and acquaintances die from this disease, whether it be directly or by suicide. It is of course always extremely sad. However, I think it is misguided to say things like, “how many more people have to die from this disease until the world gets it?” This implies that if only the world “understood it,” it would go away, or people would stop succumbing to it, or even that the world is somehow AT FAULT for all the suffering. I’m all for (responsibly, in the right way) educating the public simply because it is FAR more pleasant interacting with people who have a clue than with the ignorant, but even everyone in the world “getting it” wouldn’t stop the suffering. Eating disorders are complex multifaceted mental illnesses without simple causes. Can’t we just accept that recovery is really f-ing hard and not easily or at all attainable for some, even after multiple attempts and lots of “knowledge”? I’m not discrediting the importance of having supportive people in your life–people who “get it”– this is incredibly helpful, but even the best friends/family members/therapists/mentors can only do so much. I can also imagine that reading something like “when is the world going to wake up?!?” could come off as insensitive to the people who HAVE been “awake,” supportive, and knowledgable and still unable to stop horrible things from happening to the ones they love.

Two and a half years later, although slightly less cynical than I was then, I still generally feel the same way. It’s a complicated subject and I’ll admit my views are likely very colored by my own experiences, particularly in the world of eating disorders. I’ve already blogged about my views on conventional treatment and how ineffective it is for many people, especially those with chronic eating disorders. A lot of the people I’ve known who have died by suicide had been through multiple treatments, had access to some of the best doctors and therapists, and had a slew of very loving and supportive people in their lives. It often isn’t a matter of the world not understanding or caring, it’s just the sad but true fact that eating disorders (or depression, substance abuse, etc.) are powerful, unrelenting forces that sometimes can’t be taken down.

This is a tricky subject because I don’t mean to imply that anyone should ever be deemed hopeless or untreatable. What I do want to convey is that we (friends, family members, therapists) are all only human, and we can only do so much. As great as it would be to think that with enough love, effort, and knowledge we can save everyone, that’s not reality. I also think it’s important to acknowledge that it is not always in a person’s best interest to continue to engage with a chronically suicidal person, for the sake of their own mental health. I unfortunately witnessed the dissolution of a very close friendship shortly after my suicide attempts in 2010. This person had to go through the trauma of finding me unconscious one night, not knowing if I would ever wake up. She had to watch me come out of the hospital a few weeks later seemingly “so much better” (my words) only to repeat the same series of events less than a month later. This was on top of having to deal with me as a very sick and unreliable friend for many years. After an awkward attempt to reconnect shortly after these events, our communication gradually dwindled until we were no longer talking. I still miss her, but I don’t blame her for anything. She did what she needed to do to protect herself and I’m glad she did.

The ASIST training focused on the initial interactions with a person at risk, understanding their situation, and keeping them “safe for now.” Sometimes that’s all you can do. As a society, I hope we continue to talk openly about suicide. Even though knowledge alone cannot save everyone, it helps break the stigma and forces people to confront the issue instead of brushing it under the rug.

How to access treatment without breaking the bank: Part II

(For Part I of this series, click here)

Even though I’ve had my eating disorder for nearly two decades, I really just started exploring the world of support groups five years ago, when I first moved to Los Angeles. Before that, I had a pretty negative view of anything that involved interacting with a bunch of people with eating disorders. Up until then, all of my “group” experiences were from structured inpatient, residential, or partial programs. You know, the kind of places I wrote about here. I think spending so much time in close quarters with other eating disordered individuals took it’s toll. Very disordered behavior and ways of thinking became “normal” and I lost out on many adolescent and young adult milestones. In the summer of 2011 I moved to LA and had every intention of not only never attending treatment again, but also never getting involved with anyone in the eating disorder “world” ever again. At the time I really thought it was the best thing for me, and I was excited to finally move on with my life.

Well, surprise! Of course my eating disorder followed me to LA, and “just moving on” was pretty impossible. I found a therapist pretty quickly, but I couldn’t afford to see her as often as was recommended. I was living a “double life” by trying to maintain the image of a high-functioning grad student while also dealing with a very intrusive eating disorder. This is when I started to look into groups. Luckily for me I was now living in one of the most support group-saturated areas of the country. I tried out a lot of groups, and not surprisingly had various degrees of success. Some groups were great, others were “meh,” and a few left me running for the hills.

It’s important to be realistic about what you hope to get out of a group. I’ve never heard of anyone recovering from an eating disorder after attending a once-a-week support group (darn!). Depending on where you are in your ED, a group may not even make a small dent in your symptoms. However, groups can still be of value to almost anyone who shows up, even just allowing you to feel connected and not alone for 60 minutes a week.

I tend to categorize groups into three categories– (1) member-led drop-in support groups, (2) therapist-led drop-in support groups, and (3) therapist-led closed groups or what is more commonly thought of as “group therapy.”

(1) Member-led drop-in groups– These are almost always free groups led by the members themselves. Alcoholics Anonymous is probably the most widely-known group of this kind. For EDs, there are several “Anonymous” 12-step variants, including Overeater’s Anonymous (OA), Anorexics & Bulimics Anonymous (ABA), and Eating Disorders Anonymous (EDA). OA is an interesting group; by the name you would assume it was strictly for overeaters or individuals who deal with what is now classified as binge-eating disorder. However, it has long claimed to welcome all eating disorders. Cool, right? I’ve never been to an OA meeting myself, but from trusted sources who have been I’ve heard this– yes, OA members are very welcoming of those who struggle with all EDs, and you’ll find people of all sizes and disorders in any given meeting. That said, I know many professionals who advise against individuals with anorexia or bulimia attending OA groups, due to the restrictive dietary philosophy of OA. The group was originally created for overeaters, so the focus is truly on “abstaining” not only from overeating, but any food or ingredient that may trigger bingeing, such as sugar or white flour. To a person with anorexia or bulimia who is not overweight, this philosophy can be quite triggering and harmful.

I have been to both ABA and EDA meetings. I was first exposed to the principles of ABA in 2007 when a treatment center distributed the ABA manual. To be honest, I was never very sold on the whole 12-step/higher power thing. I am not religious and I see many flaws in trying to apply the 12-step model to eating disorders. However, the groups themselves can sometimes be helpful even if you do not completely buy into the 12-steps. Like AA, ABA and EDA offer a variety of types of meetings ranging from meetings that focus solely on one individual “step” (not for me) to women’s only meetings or speaker meetings (more for me). My most positive experience with one of these was a couple years ago when I attended a weekly EDA meeting in Thousand Oaks. These groups were packed, and I almost got scared off by the crowd at first. I don’t think I ever said a single word during the whole six months I attended, nor was the content of the meetings ever that profound that I walked away with any amazing new insights. What I liked was the feeling of mutual understanding. I liked knowing that as dark and hopeless as things got for me throughout the week, I would at least feel understood and connected for an hour one night a week, even while sitting there saying nothing. Regardless of the meeting type though, be prepared to sit through several minutes of official meeting business as they read the lengthy list of rules, steps, and traditions. And at the end, be prepared to hold hands and say the serenity prayer. For real, just like in the movies. 😉

(2) Therapist-led drop-in groups– These are often free or low-fee “drop-in” groups led by a licensed mental health professional. You’ll often find these groups run by treatment centers. Sometimes they may only be open to alumni, but often they’ll be open to the public. Eating disorder organizations and nonprofits such as ANAD and NEDA may also run these groups. Just like member-led groups, these groups vary in quality and target audience. I attended a group run by a treatment facility in Woodland Hills and was not overly impressed. There were a couple loudmouth “regulars” who dominated the discussion and grated on my nerves. The therapist leading the group was not very good at steering the group back or ensuring everyone got a chance to speak. When I moved to Pasadena I attended the same treatment center’s group at the center’s more local facility. To my surprise, the groups at this location were completely different. There was a better therapist leading who was able to engage the entire group, and the overall atmosphere was much more welcoming and supportive.

(3) Therapist-led closed groups– These are less likely to be free, but are often offered at a “low fee.” Therapists may choose to hold groups with their existing clients who all share a similar issue, and/or they may welcome referrals. Oftentimes there will be a brief “intake” process where the therapist talks to potential group members to determine if they are an appropriate fit for the group.

My very best group experience was one of these groups. My dietitian referred me to a group run by a therapist she knew. I was hesitant at first because this was a very small group. When I joined there were only two other people besides the therapist. There would be no hiding here! Thankfully, It turned out to be a perfect fit. In this group I actually got to process things and interact on a very personal level with the two other group members and the therapist. We “clicked” right away and I always looked forward to Tuesday nights during that time period.

Walking into a group for the first time can be scary, especially if you’re new to the whole group thing. Whenever walking into a new group I tell myself that we’re all there for a common reason. We’re all at least a little insecure. If the group is a dud, you never have to go back. If it’s truly awful, you can just get up and leave. I still regret not just up and leaving after being told by one egotistical therapist “You don’t talk to each other in this group. All feedback comes from me.” um. . .

Some other things to consider when looking into groups:

  • Some groups tend to attract many “regulars” while others are less likely to have a consistent turnout. Very large 12-step groups, for example, can bring in a very different crowd from week to week. If you’re unimpressed one week, you could have a completely different experience the next week based on who shows up. Even for smaller groups that have more “regulars,” the census will still change over time, so it’s worth re-checking out groups you may have dismissed several months or years ago.
  • If you’re looking for a small, intimate group therapy experience and are currently seeing a therapist for individual therapy, you can always ask her/him if she/he would be willing to start a group. The plus here is that the therapist already knows you and should have a good idea of who you would mesh well with.
  • If you’re convinced there are absolutely no groups in your area, you may be surprised. I’ve found a lot of groups are not publicly advertised but can be discovered though talking to local treatment professionals. For eating disorder groups, I have to mention this website. Don’t be fooled by the outdated layout; it’s actually a great resource that is updated on a daily basis. You can search for all types of treatment by state/region.

Finally, if anyone from the Los Angeles area is looking for good groups, please don’t hesitate to contact me. I know of several that are going on in various areas of LA and can help you decide which would be the best fit for you. 🙂

Fighting stigma by embracing the diversity of mental illness

“Have you ever been depressed? I mean really depressed??” A friend of mine asked me this back in the spring of 2010, just a few weeks after I returned from a 3-week involuntary stint at the state psych ward after a suicide attempt. And yes, she was aware of this. I remember thinking, “Is she serious?? Does she think I tried to kill myself because I’m happy?” Of course I had been depressed, really depressed before, and in fact I considered myself a pretty depressed person for most of the time that I knew this girl (who I met in treatment for my eating disorder). So why was she asking what seemed to me like such an obvious question? I soon realized that what she knew as “depression” was very different from what she observed in me. To her depression was staying in bed all day, going for days or even weeks without showering or brushing her teeth, skipping classes and getting fired from jobs due to excessive absences.

 

My depression has taken different forms over the years, but it never manifested in me avoiding showers or basic hygiene. Even when I felt like complete shit I would still try to fix my hair and slap on some makeup before facing the world. I wouldn’t sleep all day but would instead numb myself out with my eating disorder and avoid reality that way. I was often able to go to school and/or hold down part-time jobs without my depression interfering much from an outsider’s perspective. I showed up and did my work but only because not doing so would have made me feel a million times worse about myself. I still felt no real connection to my life though, even the things I claimed to be interested in. I was just filling the time before I could figure out a way to end things. This is not to say that I was constantly suicidal. However, for many years when things were especially intolerable with my eating disorder, I could not imagine living into my older adult years like that. I would set deadlines like “if my eating disorder (or any random accident/disease) doesn’t kill me by the time I’m (30, 35, 40, etc.), then I’ll have to do it myself.” I was just going through the motions of everything I did and the concept of making plans for the future was completely foreign to me. Sure, some days I told people I wanted to go to grad school, become a clinical psychologist, move to Seattle (haha, my childhood dream home– I loved rain!), but I was rarely serious about taking steps to make those things happen. If I was going to grow up to be just as controlled by my eating disorder, I did not want to live to see those years.

 

So yes, friend, I’d say I had been depressed, really depressed before, just like you in bed with your unbrushed teeth.

 

I realize it can be hard to imagine people who have the same illness as you having such wildly different experiences. A major therapy pet peeve of mine is when therapists make assumptions about you based on either their own experiences or those of their other clients. This can especially be a problem with therapists who have personal experience in whatever disorder or illness they’re treating. One of my most frustrating therapy memories is when a therapist told me she “didn’t believe” that I really experienced a certain pattern of behaviors in the way that I did (I don’t mean to be cryptic, it’s just too complicated to explain briefly) because she had “never, in all her 15 years of treating eating disorders” heard of someone experiencing it in that way. At first I thought she was joking. What I was explaining was hardly that unique of an experience among people with EDs, and I could probably name 8 people off the top of my head who I knew had similar experiences. But she insisted she was serious, she literally did not believe me and told me I was wrong and I must have really experienced it in the way she knew to be most common based on her 15 years of treating eating disorders. Well then! That was the last time I ever paid her (or anyone) to tell me my own experiences were wrong because they didn’t fit into some neat little mold.

 

Eating disorders in particular are very heterogenous in the ways they present. My best friend (who also has an ED) and I will often marvel about this together. How incredible that the foods some of us find the scariest are considered the safest for others? Some people feel compelled to constantly be moving and burning calories while others are perfectly content to sit in one place all day as long as they don’t go above their allotted calorie limit for the day. Alcohol = empty calories –> completely off limits. Or… maybe alcohol makes up the majority of your intake because you’ve somehow deemed it the safest. Some people with anorexia may not even have a distorted body image. Some people are obsessed with the scale; others fear and avoid it completely. WHAT IS THIS ABSURDITY?!?

 

What I’m about to write is something I hesitate to share because I usually prefer not to discuss some of the more “shameful” parts of my eating disorder, but I figured that’s kind of the point of this blog– to fight the stigma and show people there should be nothing “shameful” about having a mental illness.

 

My eating disorder began and stayed as restrictive anorexia for most of my adolescence but when I was 19 I picked up several new “behaviors” that put me in bulimic territory. In my second semester of college I had reached my highest ever weight, which was technically normal/healthy but still quite large for me, as I had been underweight ever since the start of my eating disorder. I can honestly say this was mostly a result of me trying hard to be more socially open and less rigid with food in college. I wanted so badly to be someone other than that shy awkward kid I was all through high school. I was probably more “normal” about food in those few short months than I ever was or have been since. That soon ended though, once I stopped enjoying myself long enough to realize I hated what I had become, physically. People started commenting about how “great” I was looking and how I was “finally starting to look my age.” While I’m sure they meant well, I, being the highly sensitive weirdo that I am, did not take any of it positively. I always wanted to avoid drawing any attention to my body, so this was kind of my worst nightmare. All I heard was, “You gave in and got fat. You failed. Fix it.” It was around this time that I started experimenting with purging… and then soon the binge/purging started. Fast. Seemingly out of nowhere. It was a very scary time.

 

I went back to see my old doctor who had seen me all through middle and high school. I remember being humiliated for her to see me weighing XX lbs more than she had last seen me. To my surprise she didn’t comment on my weight gain, but she did have what I perceived to be a rather flippant attitude towards my new “problem.” Like, “Oh, bulimia! The less serious eating disorder! We can handle this! We’ll just administer a few doses of trusty old CBT and you’ll be good to go!” This was back when eating disorders were still often conceptualized in very dichotomous ways. You either restricted your intake and were anorexic or you binged/purged and were therefore bulimic. Bulimics were normal or overweight because purging was not an effective means of weight loss. Right? Except… not quite. Please, eating disorder therapists and doctors of the world who are probably not reading this– do not tell your clients this. Not only is it not true, but it can be very very damaging when your clients decide they need to prove you wrong. I think by now most specialists in the field are well aware that it’s very possible to binge/purge quite frequently and intensely while maintaining very low weights. That’s why the diagnosis of anorexia-binge/purge type exists. So please, please, don’t be one of those professionals who quotes some made up statistic like “you always absorb at least half of the calories you try to purge” because it will not scare people into stopping the behavior but it will likely drive them to prove you wrong by engaging in the very dangerous purging methods that do indeed “work.”

 

In case that last paragraph didn’t give it away, I was not all better after a few trusty sessions of CBT, and my descent into these new behaviors was what I consider to be the the darkest turning point in my illness that made recovery seem all the more impossible for a very long time. In talking with fellow long-time sufferers, I have found this is often a taboo subject. Diagnostic crossover in eating disorders is extremely common, especially in those initially diagnosed with anorexia- restricting type. For my fellow data nerds out there– Eddy et al. (2008) followed 216 patients for an average of 7 years and found that of those initially diagnosed with anorexia- restricting type, 58% crossed over at some point into either anorexia- b/p type or bulimia. It can also go the other way– of those initially diagnosed with anorexia-b/p type, 44% crossed back into anorexia- restricting type. The only crossover that wasn’t nearly as common was from bulimia to anorexia, with only 14% crossing over into either subtype. I have theories as to why that’s the case but as I like to say– that’s a blog for another day!

 

The stigma is rampant– not just among the general public but also among professionals and even sufferers themselves. No one wants to talk about their symptoms when they don’t fit into the pretty little box for that particular disorder. Depression isn’t always sleeping for days and anorexia isn’t always lettuce and rice cakes. We don’t have to (and probably shouldn’t) share all of the graphic details of our struggles, but we can choose to fight the stigma by at least touching on some of the less familiar or glamorous aspects.