You Can Rely on Meds

I’m angry. Honestly, deeply, really angry. And worse than that, I’m angry about something that I wanted to like and support.

The New York Times is currently running a series in their Opinionator column about one women’s experiences choosing to go off her meds (with the help and support of her doctor). The first few pieces of the series I enjoyed a great deal. I understood her reasons for going off meds (they had some side effects she wasn’t too happy with, and she felt that her mood was stable enough without them), but in the most recent piece she doesn’t really describe the process of going off meds, what she describes is just having depression. Seriously, full on episode, cannot leave the house for days at a time depression.

Now don’t get me wrong, I am in support of pieces that describe what it’s like to live with depression. Too often the disease is misunderstood or swept under the table and I want to cheer when people openly speak about what it means to be depressed. But where this piece makes me angry is that the point of it is to talk about what it’s like to be at a stage of recovery that you feel you can go without meds. Now the author is describing what appears to be a relapse, and based on the information available to the reader, no one is helping her, she is not seeing a therapist or her doctor again, and she is not considering bumping her dose up a small amount until she has better skills available to her.

New York Times, that is irresponsible. In the first article, the author says that she isn’t in therapy and doesn’t want to go to therapy. That means that all the improvement she was seeing was at the hands of her meds. I cannot believe that the New York Times thought it was appropriate to watch one of their authors make this incredibly personal choice with little to no support from either a family and friends network or a therapist, and asked her to write about it. I can’t believe that no one has jumped in to say that if you don’t have the skills and techniques to handle serious anxiety and depression, then maybe you still need your meds. And I especially can’t believe that no one, anywhere, has said that it’s ok if you need to stay on meds for the rest of your life.

I don’t want to condemn this individual for making a choice based on what was important to them in their life. Everyone has the right to choose to either take or not take meds, go to therapy or not go to therapy. Meds have all kinds of side effects and can seriously impact your life (in good and bad ways), although I would also throw out that meds for many chronic illnesses have side effects but if it keeps you alive and functioning it’s still considered a good choice to take them indefinitely.

What I do want to question is the narratives that get published, especially in places that are respected and widely read like the New York Times. Because more often than not, those narratives include medication as a temporary measure, with no consideration of the fact that it is entirely ok and for some people great to rely on meds for life, as well as little recognition of the importance of an integrated approach to treatment that includes therapy, meds, and sometimes even a primary care physician checking out any physical health issues that might be contributing. What I want to question is the inevitability of going off meds, the necessity of going off meds, and the requirement that one go all the way off meds if the withdrawal process is going poorly.

That is literally the exact reason why you shouldn’t go off your meds without the supervision of a doctor, because sometimes it has unexpected side effects and it’s a really good idea to have someone around who can coach you through whether or not you might need to plateau or try a different drug instead or get in to see a therapist. It’s also a really, really good idea not to take away the main thing that you’re relying on to cope with a mental illness without adding anything else to replace it.

Certainly the articles aren’t painting a rosy picture. In the first article, the author says “But at this point, I care less about my anxiety and depression worsening, and more about getting back to being me,” finishing up with “I’ve got this, my body is telling me lately. Let me show you I’ve got this.” For an individual person, these are choices that you get to make without criticism. But to publish these as insights in a major newspaper sends the message that what’s important isn’t dealing with a horrific illness, it’s being true to yourself. And that plays right into all the stereotypes about the evils of medications and how depression and anxiety aren’t that big of a deal.

That makes me angry. It makes me angry that a newspaper is publishing this woman’s real time descent into a depressive episode. It makes me angry that no one has said “stop, this isn’t healthy for you, please go talk to your doctor/therapist/anyone again.” It’s ok to need medication. It’s ok to be a different person when you’re treating your mental illness than you are when you’re not. It’s ok to never go off your medication or leave your therapist. Depression and anxiety are chronic diseases, and they need to be treated like it. They don’t need to be portrayed as little experiments in a kind of sadness porn that makes the NYT a lot of money off of one woman’s pain.

Memory Loss and Recovery

There are lots of side effects to extreme calorie restriction, widely documented among people with eating disorders. They include memory loss, fatigue, loss of concentration, emotional dysregulation, heart problems, and many others. One of the symptoms that I experienced most acutely while I was in the midst of my eating disorder was memory loss. In my freshman year of college, I was trying to study for a Latin final. I spent hours looking over the same passages, trying to remember exactly what they meant, but when the test came I only scraped out a B (which was not normal for me).

The incompetent feeling that comes with not being able to remember anything doesn’t help when it comes to treating yourself better and feeling worthy. Unfortunately, not all of these side effects disappear the moment that you start to increase your caloric intake again. Even if your body starts to look and feel healthier again, there are some lasting impacts, most particularly fatigue (does it ever go away? Please say it goes away) and difficulties with focus and memory.

One of the skills that lots of therapists and therapy techniques promote is building mastery. The idea is that if you learn how to do something relatively well, you start to feel more confident of yourself. That radiates across lots of different aspects of your life, and especially if you work to become better at things on a regular basis, your mood will probably improve across the board. From my personal experience, I’ve found it a very helpful skill, especially when I can take the time to recognize that I’ve become good or competent at something. The feeling of realizing I know how to do something without any help or instruction is basically the best, and it’s a big part of what keeps me going on a daily basis. I start to know who I am a little more, I start to understand that I don’t need someone else to tell me if I’m doing alright, but that I know myself because I can see that I am capable.

The problem is that my brain is hazy and my body is tired. I was learning a new process for work today, but no matter how hard I tried to concentrate, my eyes kept slipping in and out of focus, and I would miss sentences, jumping back into the explanation and desperately trying to backfill the information I had missed. I felt like a failure. I wrote a blog post last week in which I completely forgot to add citations, the whole thing sliding out of my fingers in a blur without any real realization of what I was doing. And then there are the days that I fight with myself about exercise and movement, trying to get my body up and out the door to go to the climbing gym or for a run. I know I won’t get better if I don’t do it, but my eyes can barely stay open. It seems as if I can’t learn anything, I can’t remember anything. I swear I did this before, but what did I do?

Trying to build your life and identity into something that feels like self after an eating disorder is hard enough. It becomes even harder when your mind and body don’t cooperate to let you learn and grow, establish your abilities, and feel able of taking on the world. Failure is one of the fastest ways to set off depression, anxiety, or perfectionistic tendencies, all of which are quick ways to trigger a relapse into eating disordered behaviors. All of that means that the disorder itself is set up to keep you from getting better: you’re less competent after you’ve starved yourself, so you convince yourself that you’re incompetent, a failure, a loser, you don’t deserve food, and so you refuse to eat further. It’s vicious, and even when you start to get out of the cycle it takes time for your brain and body to catch up in the recovery process.

I suppose this all should serve as a reminder that certain skills need to be used with care until you reach a more stable state. Relying on external successes might not be the most important factor in building up an identity and self confidence at the beginning of recovery. It’s also a reminder that mastering a skill has to come in the context of where we’re starting and the resources we have available. For me right now, running 3 miles is a success. For lots of other people, or if I were healthier, that might be almost nothing. But at this moment, it is building a skill that I didn’t have before, and that still counts as growing and learning.

All of it still counts, no matter how much harder it is now.

You Can’t Turn Off An Eating Disordered Brain

Massive trigger warning for eating disorders

For about the past nine months I’ve been feeling pretty good when it comes to my body and my food intake. I still have a few hangups, mostly surrounding times when I should eat, but overall I was getting a decent number of calories and feeling fairly energized. I had stopped thinking about what my body looked like every day, and I had even stopped adding up the totals of what I had eaten each day to try to decide if I was allowed another item (or if I needed to go work out).

It was a massive relief to not have those scripts playing in my head anymore. But recently, somewhat out of nowhere, they’ve started to play again.

I have a lot more tools available to me now. I have more friends to ask for help, a better idea of what I want out of my life and why an eating disorder isn’t compatible with that, a fuzzy kitten to distract me, and a variety of strategies about what makes me feel good in the moment, but none of these things have managed to turn off the voices or the accompanying anxiety. They are enormously helpful when I need to choose a better behavior than restriction, purging, or overexercise, but no matter how often I try to ignore the bad suggestions my brain keeps giving me, it comes back louder.

This is what a lot of people refer to when they say that you never really recover from an eating disorder. The disordered brain will linger on and on and on. And while outsiders might suggest distracting yourself or challenging the thoughts, what they don’t understand is how incessant it is. When you wake up in the morning you wonder about what you’ll eat that day and think about whether yesterday was a “good” day (ran a calorie deficit). You go to put on clothes and are left with the quandary of what fits and what doesn’t, what you can convince your brain is acceptable. You go outside and now it’s the comparison game, who’s smaller than you are, who will see you as acceptable, does everyone see how big you are or do they care?

It goes on endlessly. You cannot turn it off (or at least no one has figured out the magic switch yet except constantly choosing a different behavior and working to focus on something else).

What no one tells you about jerkbrains, whether they’re eating disordered or OCD or depressed or anxious is that they will exhaust you. They don’t tell you that the worst part isn’t the full on meltdowns, but the normal days where you thought you were ok but instead have to spend half of your energy fighting with yourself.

It’s discouraging. While it is realistic to know that someone with a disorder that is highly linked to genetics will probably always have to be on the lookout against a recurrence of symptoms, it makes life feel like a neverending Sisyphean endeavor, even moreso than it might for someone who just has to get out of bed and drag themselves to the office each morning.

Even writing this feels like a repeat of things that I’ve said far too many times. It certainly puts more importance into the question of whether genetics are destiny. But pushing against all of the woe and angst and “determinism means it just doesn’t matter!” is the fact that I know I have changed. The eating disordered brain remains, but there is something in there or in me that can adjust. I make different choices, and the lows come further and further apart. I hate inspiration porn, especially when it comes to mental health, so I have to admit that I have no idea if there’s a relapse in my future or what it means for the quality of my life that self hatred is an essential ingredient of every day. But I am also done with wallowing in the unhappiness, so I also have to say that I have hope. There is the possibility of joy.

Liz Lemon Is No Tina Belcher

I’m a bit behind on the times, but I’m finally getting around to watching 30 Rock. Unsurprisingly, I deeply enjoy it and also appreciate that Liz Lemon is unabashedly interested in promoting women. But there’s one little thing that drives me crazy every time I watch the show.

Tina Fey is a conventionally attractive woman. She is skinny, white, has a pretty face, dresses perfectly well in the show and elsewhere, is able bodied and cis. There is really nothing about Tina Fey that falls into the unattractive category. She also is a pretty normal person. Her weirdest habits are such odd things as eating, not going to the gym, and working too much. So why are there comments nearly every episode about how Liz Lemon is fat, how she’ll never get a boyfriend, and how she’s really weird?

There’s an entire plot line about how she needs to settle instead of holding out for her ideal man, because she’s already over the hill (at the age of 40, which is younger than my parents had me). How damaging is it to see a beautiful, skinny woman called ugly and fat over and over? I know that personally when I watch the show, I walk away feeling more self conscious and more worried about my appearance because any body is apparently fair game for criticism, even in shows that are purportedly feminist.

Of course there’s nothing wrong with being not conventionally attractive, or honest to goodness full on weird. See other feminist idol Tina Belcher, the teenage heroine of Bob’s Burgers who is voiced by a man, drawn almost entirely with straight lines, and basically incapable of human interaction. She writes erotic stories about zombies. But Tina is not ashamed. Tina loves who she is, and no one gives her crap about it in the show.

The contrast in 30 Rock is uncomfortable. Liz isn’t doing anything wrong. She’s perfectly competent at her job, and yet she’s sexually harassed, teased, mocked for her weight and her body, and told she needs to stop eating as much. She seems ashamed of her behaviors, which is a weird choice for the writers and for Tina Fey as Liz is supposed to be a strong (although flawed) woman. We don’t need anymore women with stereotypical, unrealistic flaws. We don’t need anymore women whose flaws are that they work too hard and don’t clean enough and have high standards when it comes to dating and like to eat. I’m getting really sick of the “very pretty person portrays nerd/ugly person” trope, as it reinforces over and over again that a. ugly people shouldn’t be ugly because it’s wrong in some fashion and b. that if you actually aren’t conventionally attractive then you’re full on hideous.

This is hardly a new complaint. We see it in a lot of the geek to pretty girl movies like The Princess Diaries or She’s All That. Except that in this case it’s a show that’s heralded as being good for women, and it’s not nearly as obvious. There’s no one telling Liz that she directly needs to change in order to get something, just mocking. We can do better. We can have more Tina Belchers.

Bad Feelings Are Not Bad

For a long time, I have subscribed to a basically utilitarian ethics, one that is predicated on harm reduction. When I first started thinking about ethics in any sort of real way, my brain was not in a healthy place, and so I came to the conclusion that if I ever caused harm, what I had done was bad. In particular I never wanted to cause bad feelings in anyone else, especially by bothering them, annoying them, taking up too much of their time, being demanding, or unintentionally stepping on their toes in some fashion. I wanted to take up less space so that I would never inadvertently cause someone to feel bad feelings.

In large part, I attribute this to the fact that my own ability to tolerate distress was complete crap. Nearly every bad feeling I had felt overwhelming, and all I could think about was how much I wanted there to be less of those distressing feelings in the world. I had no idea how to have a “negative” feeling without it ruining my day, and so I assumed that every time I influenced or impacted another person, it meant that they would remember and feel that negativity forever. I was convinced that any time I made a mistake I was actively harming the world around me and making life worse for other people. This very quickly led into a perfectionism predicated on the idea that if I wasn’t perfect then I was seriously hurting people and hurting people in any way was completely unacceptable.

Let’s take a metaphor for a minute (it’s fun, I promise). Say you’re in a crowded room and you bump into someone. You step on their toes a little bit because the crowd was shifting or you lost your balance or you just didn’t quite see them. No big deal. You move and apologize, and for most people that’s the end of it. The person that you stepped on really probably hasn’t had their life impacted in any serious way, and part of being around people is the knowledge that sometimes they’ll be in your bubble. Almost no one in the world would suggest that if there’s a possibility you might step on someone’s toe you should not go out at all. Instead, we take reasonable precautions, like not wearing stilettos in situations where everyone else is barefoot, and trying to keep an eye out around us, and apologizing if we mess up. In terms of quality of life, I would much rather go out and get bumped than stay in for fear of getting bumped.

Most of the time, the little mistakes we make like saying something mildly offensive or accidentally insulting someone are a lot like getting your toes stepped on. It’s annoying and might be mildly painful, but as long as the other person stops and apologizes it really doesn’t matter. Sometimes you have to let people know they’re stepping on your toes (especially if you have sensitive spots that are a little out of the ordinary), and sometimes if you have an especially tender point you have to let someone know that it might look like stepping on toes but for you is jumping on a broken foot (I may be taking this metaphor too far). The point is, most people are more than resilient enough to make it through a few social hiccups without it affecting the overall quality of their life. Even more than that, the benefits of socializing far outweigh the small slip ups that do happen.

This is the secret: bad feelings are not bad. They are not immoral. It is not even immoral to cause them. Sometimes they are entirely healthy, good, and important things to feel, even if they are somewhat unpleasant. Emotions like anger, sadness, frustration, or other so called negative emotions really exist to give us information. Most of the time they’re pretty in tune with what’s happening around us, so if someone violates a boundary, if we lose something we care about, if we cannot reach our goals, or if there’s something else that requires our attention or action, we feel an emotion in response. Good. It’s just like pain letting us know that something is not healthy.

Not all kinds of pain are things that we want to have happen, but some kinds of pain are good and important and necessary. They come from change or trying new things or growing in some fashion. Take a child moving away to college. Both the parent and the child will likely feel some sadness as they are to some extent losing each other. No one would suggest that this is a reason for a child to never leave home. We have these emotions to give us information, but sometimes they give us information we already know or can do nothing about or don’t want to do anything about. So the feeling is just there. And that’s ok. It’s not a bad feeling. It doesn’t ruin someone’s life or even day or week. Just like sometimes I get headaches and that’s annoying, sometimes I get sad and that’s annoying. Sometimes other people are the source of both of those events. In neither case do I think that means whoever caused it is a bad person that I don’t want to be around.

I do still like the idea of minimizing harm, but we also have to recognize that it is impossible to do no harm, and that it’s ok. Other people are more resilient than you might expect. And those moments of sadness or anger? They’re really not all that bad a lot of the time. Negative feelings are an entirely acceptable part of human reality.

Disclaimer: this does not mean that intentionally hurting other people is ok. It also does not mean that feelings that cause serious distress or harm are great and awesome. It means that some negative feelings sometimes are acceptable.

Is “Functioning” A Useful Mental Health Framework?

One of the sets of terms that gets thrown around a lot in therapy and psychology circles is high functioning vs. low functioning. I’ve seen it most often when referring to people with autism, but it gets used in many contexts. High functioning individuals with mental illness are usually considered those who can hold down relationships, a job, look presentable, and live independently. Low functioning individuals are defined as those who need help with basic tasks.

There are a lot of problems with this terminology, many of which Leah Harris identifies at Mad in America. It tends to divide people into absolute groups rather than recognizing that people have strengths and weaknesses, it doesn’t allow for change, it can easily set apart high functioning (and not worthy of treatment) from low functioning (and not competent to advocate for themselves or have voices that we hear). More often than not the definition of functioning is related to capitalism: can you work and contribute to a capitalistic society?

“Functioning” terminology does a lot of disservices to people with mental illnesses and leaves a lot of people who have mental illnesses stuck on the outside of conversations about treatment and policy. But it has a pretty strong pull for a lot of people. It makes an intuitive kind of sense. Some people seem to be getting through life better than other people in terms of their relationships, their distress, their overall levels of happiness. Shouldn’t we be able to talk about that? Shouldn’t we be able to talk about the fact that some people need more support than other people?

Yes and no. Functioning can mean a lot of things depending upon what it is the aim is. If the aim is functioning within typical societal structures and capitalistic expectations, then the functioning model is deeply unhelpful. But what might be helpful is understanding that mental illness can deeply impact an individual’s ability to function as they would like. It can keep them from reaching their own goals, or pull them into behaviors that violate their values. One of the framings that DBT provides is the idea of effectiveness: will your action be effective at helping you reach your goals and bringing your life more in line with what you imagine you’d like it to be?

Functioning can run parallel to that in many ways. And this points to a larger problem with how our society conceives of the purpose of people. Society tends to see people as cogs in the larger machine rather than individuals who have different goals and wants. There is no singular good life, which means that there is no single way to function correctly. Even more than that, people are considered to be functional or non functional rather than societies. Individuals are not the only ones who can and should make adjustments to reach a better level of functioning.

Neurodiversity has been positioned as an alternative to the model of functioning by some people, but I don’t think that the two have to be diametrically opposed if we reframe what it is that an individual is functional at. Neurodiversity allows for a variety of paths and goals, and measuring functionality within that framework allows us to talk about how much support an individual might need or how far along a road to recovery they might be without silencing anyone.

I’d like for us to reconsider our aims when it comes to treatment of mental illness. Is it to create people who can fit into the society that we already have without rocking the boat, or is it to help individuals be satisfied with their lives and live in ways that are fulfilling to them? I vote for the latter.

 

Between A Rock and a Hard Place: Triggers

Yesterday I was hanging out with my partner’s family having lunch and chatting. I generally like Partner’s family, and they’re very kind people. But I’ve only known them for a few months and I haven’t established a very close bond with them yet. That means they’re mostly unaware of my mental illness. It’s not uncommon for people with mental illnesses to be around others that have this level of acquaintance: you know them, you care about what they think, you respect their opinions, and you want the relationship to grow. But they don’t know about your mental illness.

Most of the time that’s totally fine, especially since it’s not too hard to decide that if someone is a total butthead about mental illnesses and runs around spewing stuff like “it’s all in your head” or “just smile more” you can decide that you simply don’t want to invest in the relationship and stop hanging around them. But sometimes you end up in a circumstance in which someone that you want and need to build a relationship with inadvertently starts triggering you.

So yesterday when the conversation turned to calories and weight loss, I really wasn’t sure what to do. These conversations are nearly always triggering to me, to one degree or another. Sometimes I can keep my reaction under control, but usually it means that I’ll spend the next hour to day thinking about calories and weight loss and fighting with myself over my own caloric intake.

What do you do when you’re in a situation in which you can’t disclose your discomfort without outing a whole other pile of things, but you can’t leave without harming a relationship? Are there tools available? Sure I could have set a boundary by just saying “Hey, I really don’t think weight is that important. Could we talk about something else?” or just changing the subject, but when you’re not in a position of power or comfort, that can be extremely difficult. There are all sorts of situations where it’s nearly impossible to set boundaries like that without risking social repercussions.

There are lots of distress tolerance skills that seem really applicable here, things like breathing exercises, soothing oneself with nice sensory experiences (finding the soft blanket in the room and cuddling it), taking a brief mental vacation until the topic of conversation is over, distracting yourself in some fashion (if there are kids around it’s always a good excuse to say you’re just going to go play with them). It’s hard, and it might require limiting time around people you’re not sure you can trust with your mental and emotional health, but as relationships get closer you can start setting clearer boundaries.

The problem in my mind is that it’s still considered socially unacceptable to discuss your mental health in a casual way. It creates situations like these where there will always be unspoken needs because we’re not allowed to speak of mental illness. While physical illnesses aren’t always treated much better, it isn’t considered totally weird or unacceptable to say “hey, can we not have nuts for dinner since I’m deathly allergic and will have a horrible reaction.” It’s considered healthy, logical, and reasonable, rather than oversharing, being demanding, or straining a relationship. For some reason saying “I have the equivalent of a mental allergy to this conversation, can we please stop talking about it?” is awkward and unacceptable, something that opens you up to questions about whether your problems actually exist, or even can lead others to purposefully trigger you.

This might be one of the smaller areas in which mental illness stigma exists. It’s the little times that you have to bite your tongue and just deal with other people metaphorically standing on your feet by discussing triggering or difficult things. But those little moments add up. Each time they happen you have to have an internal dialogue about what you’ll do and how you’ll cope. It uses up important resources. And it normalizes the idea that you don’t deserve to be able to ask for things, even if others aren’t directly sending that message. The unspoken rules of relationships say that until you know each other well, you act polite.

I’m going to try to make a promise to myself that I will attempt to be better at boundary setting, even in situations like these where it’s possible that it will harm the relationship. I don’t have to be rude, mean, or demanding, but letting people know what is harmful to me can go a long way towards normalizing the idea that it’s completely ok to have needs and wants, as well as openly express those needs and wants. It’s even ok to just say that you have a mental illness and invite no further discussion.

This kind of rock and hard place situation doesn’t have to exist. There is no logical reason that disclosing an emotional need should be inappropriate or unwise. So I am going to change something I don’t like by changing my own behavior.