anecdotes and reflections on living with depression and anxiety
Fall has come.
The humid, 90-degree days have, at long last, left New England -- and good riddance, I say. The air has that crisp tinge of autumn to it, the sky an invigorating blue. I’ve gone to my first harvest festival on a farm. I’ve eaten an apple cider doughnut. I’ve worn flannel (oh, how I love to wear flannel). My social media feeds burst with back to school pictures, then with little ones picking apples and families posing in pumpkin patches. My group of friends has set a date for our annual Friendsgiving dinner, and my in-laws have booked plane tickets to come for Thanksgiving in November. My fuzzy slippers have found their way out of the back of my closet.
The other parts of fall have come, too: grey days of rain and mist, the gradual realization that the sun is setting earlier and earlier each day. In a few weeks we’ll turn our clocks back an hour, thanks to Daylight Savings. I used to love that night, the one marked by an extra hour of sleep, but now I look ahead to it warily, not craving the sleep as much as I fear how the dark evenings will begin to creep up even earlier each day, culminating with the 4:00pm dusk that we get for a few very short (and yet, very long) days a year in December.
It’s coming, that time of year that pulls me like a magnet into my bed, that makes me want to sleep for days on end, that seeps into my brain and tricks me into thinking the sun will never come out again.
You may gather from these words that I have mixed feelings about the season. Autumn has always been a time I looked forward to -- the coziness, the quaint New Englandy harvest-themed events, the return of steaming mugs of morning coffee after a summer of clinking ice cubes in my cold brew. But now, I approach September and the following months with less a sense of warm contentment and more an air of trepidation.
Because, as you might have guessed, I have seasonal affective disorder.
I’ve had about a year to digest this diagnosis. Last fall, as the days grew shorter and my mood grew dimmer, my therapist and I began talking about the likelihood that the “winter blues” I had tried to ignore for years had become (or maybe had always been) SAD. (The acronym for this thing always makes me want to laugh and then cry.) Together, we strategized ways I could deal with the rapid worsening of my mood, the deeper sense of sadness I was feeling, the sense of helplessness that pervaded my outlook of the upcoming holidays. I was most worried about how damn tired I was -- all the time, no matter whether I slept or exercised or napped or ate well. The fatigue felt like an enormous concrete wall, a monolith I just kept ramming into headfirst, day after day.
But I remember leaving my appointment that day feeling empowered to tackle this new diagnosis. Somehow having the validation of a label lit a fire in me -- I felt like I knew what was coming and I could arm myself against the impending doom and gloom (figuratively and literally).
I took vitamin D (I do this year-round, but most vigilantly in the fall and winter); I got back on fish oil. Instead of burning cozy, fall-scented candles, I stocked up on bright, summery, scents: Mango Tango, Pineapple Cilantro. I asked my husband, who gets up before I do in the mornings, to pull open the curtains and turn on lights throughout our apartment, to lessen the temptation to linger in the dark. I walked outside, even on days when I couldn’t get to it until the sky was dimming to dusk. I tried to go to bed and get up at the same time every day (but no, I was not getting up at 7am on weekends, because, weekends).
All of this helped. But it wasn’t enough.
So, after a few weeks, I did the single most effective thing I have done to fight my seasonal affective disorder. I did some research and bought a sun lamp.
If you don’t know, light therapy or phototherapy is the use of certain types of light boxes to mimic outdoor sunlight. For it to work, it has to emit 10,000 lux of light (don’t ask me what this means) and minimize UV rays. There are varying recommendations, but what has worked for me is turning it on at my desk first thing in the morning and sitting in front of it (not looking at it!) as I go about my work, for 30ish minutes (or maybe 45 on those really dark, short days).
It’s very, very bright. It’s not particularly pleasant. The one I bought isn’t particularly cute, either (cat stickers helped with this part). But holy hell, guys, it worked.
My energy lifted. My mood lightened. I felt like I could actually get through the day without sinking into my bed with an very serious announcement (to my husband, or my cat, or just myself) that I was hibernating until spring. I felt like I could do my work and then go do other stuff, without a three-hour nap first.
It wasn’t perfect. But it was better.
This year, the familiar apprehension toward the imminent shortening of days started to make itself known in early August. (As my father-in-law likes to say in a dry, faux-cheerful tone: “Summer’s all downhill after the Fourth of July!”)
I was starting to allow the seasonal affective disorder to control my plans and behaviors before it even set in, even when I was feeling well otherwise. I remembered how capable, how equipped I felt last fall once I named what I was dealing with and faced it head-on. I remembered that while I can’t control the changing of the seasons, I can absolutely control how I think about them and how I take care of myself as the leaves turn and the afternoons darken. I can make choices now that will help me take care of my future self then.
I dug the sun lamp out of my closet, set a cheery candle called “Color Me Happy” on my desk, and went for a walk on my favorite sun-splattered trail on the first day of fall.
My duo of fall game faces: sitting in front of my beloved sunlamp, and enjoying changing colors at a local swamp trail.
Hey, hi, hello.
If you haven’t been here before, then hi (with an exclamation point)! I’m excited about you! You can learn about me and this blog here and, if you want to, you can start at the beginning of my delightful mental health story here. Or you can just read this. Or you can skip around and read what you want. Really, it’s up to you. Obviously.
If you’ve been here before, let’s start with the obvious: it’s been awhile. Thanks for coming back. I’m glad you’re here, and will readily acknowledge that I disappeared from this blog the way an introvert ghosts a crowded party. (Oh wait -- I sometimes do that too. Whoops.)
So, formalities aside -- here we go. I want to tell you about why it’s been a while.
It’s been awhile because in the past, words have strung themselves together in my brain with a pressing need to be expressed and received immediately, and I would have full paragraphs in my head before I even sat down to type. I could write blog post after blog post, editing on the fly, often struggling to wait even a day between posts. And then, suddenly, it all stopped. The words just bunched all up in my head and refused to form meaningful sentences. They boycotted -- or mutinied -- or went on vacation. What had been so easy, so available to me, had vanished.
And so: silence.
I think one reason my writing slowed down at first was that I wrote a post about how easy it was to get pulled down into the spiral of depression: how you can tiptoe around it and give it a wide berth and still manage to get sucked into a vortex of aloneness and worthlessness and hopelessness.
Then, in all my wisdom, I promised a part two that would explain what it actually feels like inside that place. And hell if I could bring myself to sit down and write about that experience in any way, let alone in a cogent and articulate way that would be accessible to readers. I just couldn’t go there.
At first I couldn’t write about the dark spirally depression place because I wasn’t in it. Thank the Lord, hallelujah, I wasn’t in it. I was doing more than just getting through life: not just working and eating and sleeping, feeling bored and useless and drained, but actually finding time for the things that constitute living. I was doing things like nurturing friendships, and exercising, and cooking, and volunteering. I was sometimes enjoying my job. I had purpose. I felt like I was actually living life a little bit, and why would anyone who is thriving (or has even allowed herself to think that she might feel like she’s thriving) want to willingly put herself in that familiar, treacherous place of misery? Just for the sake of writing a few words?
And the longer I was unwilling to write about that place, for fear of venturing into it again, the more stubbornly I held back from writing at all. I’m a people pleaser, my therapist says -- always worried about what others will think, trying to anticipate how I can best live up to their expectations instead of my own -- and so having promised a part two about “the spiral,” I thought that I couldn’t write, let alone post, anything else until I wrote about that. And now, as I check the date on that last entry, I am startled to see that it has been almost 17 months since I published anything on here.
I’ve certainly thought about writing something and posting it. To be perfectly honest, I’ve thought about it almost every day. My website subscription came due and I renewed it, promising myself that it would be good motivation to actually start writing. That was months ago. It took weeks and weeks of mentally prepping myself, of talking myself up, of reminding myself that I have valid thoughts and decent words with which to articulate them. But I was afraid to come back without the content I had teased in my last post.
Finally, after months of hemming and hawing and not writing, I realized -- in the words of my wonderful therapist -- “Who cares?” (That’s her code for, “You’re a grown woman and you can do what you want and live how you want and who cares what anyone else has to say about that?” She probably says it at least once a session, and I love her for it.)
Who cares what I said I would write back then? Who cares that I took an unplanned hiatus from blogging? Who cares that now I’m back and I’m writing something different from what I said I would, a year and a half ago?
Who cares? If you’re reading this (and seriously, God bless you if you are) then you obviously have found a way to be okay with this lapse of mine. Sometimes we need to remind ourselves that others, whether they’re close friends and family or Internet strangers, are often capable of offering more grace and acceptance than we are willing to offer ourselves. I think you’re probably that kind of person. I’m pretty glad about it.
(Did I really think someone would come at me for not writing what I said I’d write? No. Do I really tend to make decisions based on what I think people want me to do? Yes. Do I still roll my eyes every time my therapist says that I should stop doing that? Yes. But only because she’s right.)
So here we are. I have some things to say and some stories to tell about living with depression and anxiety, and if you’ve made it to the end of this rambly bit of writing then you must be at least a little interested in whatever that might turn out to be. For that I’m thankful. As for the epiphany that I can write what my soul needs to write, and not what those grumpy depression thoughts tell me I “should” be writing -- for that, I’m optimistic.
“Are you spiraling?” my husband might ask, as I express that it’s been a hard day and all I want to do is go to bed. If you’re a regular reader, this phrase might be familiar to you: the concept of the “depression spiral” has worked its way deeply into my personal lexicon of mental illness descriptors. I think it works so well because it captures so accurately the momentum that depression can gain as it whirls around a person, sucking him or her closer and closer to the edge and eventually down into a deep, dark hole of apathy, sadness, hopelessness.
This is part one of a few entries I’m planning to write about the spiral. There are at least three big aspects of this thing for us to face down together, so I’m planning to address the following, in separate posts:
1. What it is this so-called spiral, and how do you manage to keep getting yourself sucked into it?
2. What’s it like inside?
3. How the hell do you get out?
So, here we’ve got part one. Bear with me, please, because we’re going to back our way into the twisty depths of depression by way of a sillier, more mundane analogy. I think it works, so I hope you do too.
As I have begun to think of myself as a person in recovery from a depressive episode, rather than a person who is presently depressed, I’ve had to start looking at how my days and weeks come together and what the pacing of everyday life looks for me in recovery.
Through this process I have somehow taught myself to recognize what a “good day” looks like and to take full advantage of it. You never know how long a good spell might last, I tell myself, so you’d better get in all the things you’ve been wanting to do before the clouds drift back over and cover you in shadows again. As a result of this (somewhat misguided) “carpe diem” attitude, these good days have begun to look a little frenzied, sometimes socially but often just around my household, and generally, for whatever reason, in the form of cleaning.
I work from home, so when I feel well and have energy and motivation to get things done, I not only perform my work tasks ably and efficiently, but feel spurred on to get things done around the house as well. I appease my Fitbit by pacing around the house as I pick up clutter, make the bed or dust a shelf or two. I use my lunch break to wash the dishes in the sink and then, as if by magic, feel antsy with desire to continue “being productive” as I finish out my work day. I might go for a walk and then come home to continue cleaning and make dinner. Once I’m in this zone, it’s hard to make me stop; I want to make sure every room in the house is straightened up before I relax. I have been known to straighten throw pillows or refold the blanket behind my husband while he sits calmly on the couch, looking at me with a bemused expression.
If you know me personally, you likely know that my home is most often in a state I like to call cheerfully cluttered -- we live here, and it looks like we do, which I think makes it comfortable. I am by no standards a neat freak. The tea towel hanging on my oven door (thanks, Mom!) proclaims, “Anyone who has time to clean isn’t reading nearly enough!” and this is a fairly apt description of my attitude toward housework. Cleaning and keeping house tend to be the first things to fall off my to-do list when I’m depressed -- where would the energy for that come from? -- so when I actually feel like doing it, and like I can do it, I make sure to do as much of it as possible, as quickly as possible. That way if tomorrow comes and it happens to be not such a great day, I have at least accomplished something in my brief respite from depression.
The problem with this kind of frantic pacing is that, often, it more or less guarantees that a good, accomplished, productive day will be followed by a listless, self-doubting, exhausted day.
Why, I asked my therapist recently, could I not expend all my positive energy in one day and wake up restored after a night’s sleep, ready to do the same thing again? Why could I not spend a day working, exercising, keeping house and cooking like a “normal” person without experiencing an almost crushing fallout the next day?
The answer she gave me, which depression often seems to give us, is simply, “because.”
Because I have an illness that impacts my energy levels.
Because my energy, despite all my efforts, does not operate on a 24-hour cycle that kindly resets each night for the following day.
Because when I allow my mind to become a whirlwind of things to do at work, things to do after work, things to do around the house, things to do over the weekend, things to do before a friend stops by -- I become exhausted.
And because exhaustion -- sometimes even productive, proud, elated exhaustion from living life -- simply creates the perfect toehold in my mind for depression to sneak back in and say, “You silly woman. You didn’t think you could actually keep up with that type of pace for more than a day or two, did you?”
So, my therapist suggested helpfully and cheerfully, maybe you clean the bathroom and straighten up the living room and then sit down and read your book or watch a show.
Maybe you leave the kitchen floors for tomorrow.
Maybe you prioritize your energy and well-being over the course of days, weeks, months, instead of cramming a week’s worth of responsibilities into a single day.
I sigh and roll my eyes and sit back, looking at her. “Is that really it?”
Yes, she says, that’s really it, and you have to look at it as a form of self-care, recognizing that treating a good day like it will be the only one you have will cause you to spend so much physical and emotional energy that then it really will be the only one you have that week.
This kind of retraining is really, really hard. But I’m trying to think of the good days as an opportunity to enjoy life, in a combination of productivity and recreation and relaxation, rather than a race to get everything done before I feel unwell again. Because the dishes and the grimy stovetop will still be there tomorrow, but this day -- a day of motivation to walk in the sunshine, of the capacity to enjoy a good book in the warm company of my husband and my cat, of unfettered gladness to be alive -- is happening now, and I’ll be damned if I don’t spend some of that precious energy learning and practicing how to enjoy that too.
I’m going to get a little extra-personal in this post, in the belief that the more honest and vulnerable I can be, the more my readers can understand the many nuances of life with mental illness.
I want to be a mother.
Of course I do. If you know me, I doubt you think any different. I have always loved children and I think I’m a pretty nurturing person. I like to take care of others. I really like holding babies. There has never been a time at which I have not thought that I would grow up to be a mom, that I would throw all my love and energy and joy and sanity into raising a family, that my husband and I would have cute babies who would grow into happy kids who would turn into sullen teenagers who, hopefully, would become the kind of adults who will love us and take care of us when we are old and creaky and grouchy. It’s always been our plan.
Ah, the plan -- that silly thing we occupy ourselves with making, and remaking, and pretending we have control over, until one day we realize that here we are, that carefully curated plan cast to the side, as we have busied ourselves with the actual, beautiful grind of just living our lives.
Before we got married, my husband told me (less than halfway joking) that he wanted to be “done having kids” by the time he was 30. Well -- almost six years later -- I am on the last legs of 29, he’s not far behind me, and there are no kids on the horizon.
I’ve grown accustomed to the questions, whether they are nosy or curious or needling or serious. “When are you thinking about having kids?” “Are you guys thinking about trying soon?” “You know if you wait until you’re ready, you’ll never actually have them.”
Please (and especially if you are a person who has asked me this yourself) don’t get me wrong. I’m not offended by the questions. We’ve been married for almost six years, and I’ve never been secretive about my desire to have kids. I’ve even offered a [very vague] time frame in the past (“oh, maybe in a year or two…”) so it seems pretty normal that as I round the base toward 30 I’d have to be at least thinking about it.
I know that I don’t need to own a home before I start a family. I know that I don’t need my finances to be in impeccable order before I think about getting pregnant. I know that nothing will actually prepare me for motherhood, because motherhood is unto itself one of the most breathtakingly difficult and wondrous things this life has to offer. I know that. Don’t tell me I shouldn’t wait to be ready; “ready” is a highly relative term.
There’s a lot of good awareness rising up lately about why it can be insensitive to ask a woman whether and when she is going to have children. She may be struggling with infertility. She may have grown up with parents who didn’t show her how love and family should be. She may have miscarried once, or twice, or so many times she can hardly count.
But did you ever think that she just might not feel that she is well enough, mentally, to responsibly bring a child into this world and care for it the way she knows she can, and longs to, and someday, hopefully, will?
Of course that’s not to say that people with mental illnesses can’t, or don’t, have happy, nurtured, cared-for children. They do! All the time! My point is simply that, just as with any other medical condition, some of us must work harder or think more carefully or wait longer to get to a healthy enough place to have kids.
On the surface, some days, I have my act together. I work full time, my house is reasonably organized and clean, I have a plan for dinner that doesn’t involve using an app on my phone to order it, I get all my errands done. I am acting like any regular adult who does these things all the time, and I think, “I’m so ready to add kids to this picture.”
Then soon, maybe the next day or the next hour even, the dark, vicious shadow starts to swirl in the air around me, encroaching on my mind, my space, my heart until it settles inside me, cloaking all of the light of my optimism, my hopes and goals in impenetrable darkness. “Of course you can’t be a mom,” the shadow tells me. “Look at you. You didn’t even shower or make your bed today. What makes you think you can be responsible for growing tiny lives and hearts and dreams when you can’t even make yourself a cup of coffee?”
Thankfully, the darkness doesn’t come as often or stay as long these days, especially compared to several months or a year ago, but it does still come. The doubts and insecurities that a healthy person might have about parenthood multiply tenfold, or more. How can someone who worries about being five minutes late for a dinner reservation possibly handle the concerns and anxieties of being a mother? How can someone who has had days of being unable to get out of bed, much less face the obligations and duties of everyday life, possibly bring a healthy child into this world and not mess it up?
Not to mention what the shadow tells me about the genetics of all of this. “Depression runs in your family. Do you really want to bring a person into the world who will experience this kind of pain and sickness? Do you think that’s a responsible thing to do? Do you think that’s fair?” No, I tell it. It sounds awful. Why would I ever knowingly give someone life when this is how they could feel once they get here? What kind of a mother would I be if I did that? What if my child had it worse than I ever have? It will be my fault. It is, in fact, desperately unfair.
Again, I beg you not to misunderstand; I don’t take these thoughts as truth. Depression lies, as we know, and it lies well, making us feel uninspired, unimportant, incapable, unworthy. I know that I will be a good mother, if I am ever blessed with that opportunity. I know that my husband will be an outstanding father. Any child we have will be showered with an absurd amount of love not only from us, but from grandparents, aunts and uncles, family, and friends. We will care for those kids, and love ‘em, and raise ‘em to the best of our ability, and no level of depression will change that. And I’m well aware that I can no more control passing on mental illness genes than I can the genes that may (or may not) pass along blonde hair and blue eyes, or near-sightedness, or the wide Finnish feet my husband’s side of the family always jokes about.
So the reason my husband and I are choosing to wait, to not have children at this exact moment of our lives and in our marriage, is not the fear that these thoughts are true. It’s the reality of the illness that causes them, the truth about where I am in my slog through the swamp of depression. I’m learning about myself, about my illness, about ways to treat myself better and cope with my emotions and change my behavior to allow for improvement in how I feel and think and live. In this way, no, I am not yet ready to become a mother. And yes, someday, hopefully soon, I will be more ready -- at least psychologically -- to step up to the task. And I need to be more ready, because there’s also the idea of what my hormones will do when I become pregnant, the need to taper off of medications I’ve come to rely on for the duration of my pregnancy, and, of course, my super-increased risk for serious postpartum depression. It’s a lot to think about, so yes, I want to be more ready than I am right now. I want that baby to grow inside a happy, healthy mama, and come out to be mothered by a woman who is strong, and graceful, and resilient, and rational, and self-loving. There are ways I can work on becoming those things for that baby now, so that I am more ready to evolve healthfully as a mother when the time comes.
But one of the biggest lies we learn from our culture, from social media, from the entertainment industry, is that life is a race -- that we must keep up with the neighbors -- that we must meet all of life’s milestones at the same time and in the same way that everyone else does.
A dear friend once shared with me the quote, “Comparison is the thief of joy.” (Google tells me that Theodore Roosevelt actually said it.) But I’m learning to live it. My children, whoever they will be and whenever they will come, will benefit far more from a mother who learned to live and grow and breathe and cope within her mental illness, rather than one who rushed into parenthood because she felt like it was supposed to be the right time. I will content myself with the knowledge that as I wait, and work on myself, my health, my recovery, my soul, I am becoming the mother that I will someday, Lord willing, actually need to be.
I’d love to be ready now. It’s hard to watch cousins and friends and former classmates announce pregnancies and start to grow their sweet families. Some days it actually really sucks. But most days it’s just another day to cherish being married to my best friend, have the chance to sleep in on weekends, be overly affectionate to my cat and focus on becoming well. “Ready” means different things to different people. Maybe these words can add a new layer of context, an extra tinge of compassion, the next time you wonder why that happily married, baby-loving couple hasn’t made their own just yet.
“This project at work is making me want to kill myself.”
“I can’t help it, I’m just so OCD about my keeping my books in alphabetical order.”
“The weather is so bipolar today. First it was pouring and now the sun is out.”
I’ve been mulling over how to write this entry for a good couple of months now. It’s an important topic for me, but I don’t want to get preachy and I definitely don’t want to patronize my readers (for whom I am unendingly grateful). I know all too well that folks are good and fed up with people telling them what to say and what not to say because someone, somewhere, might deem their words offensive or inappropriate.
But part of advocating against stigma and being a voice in the mental health community is learning when to speak up -- not for the sake of political correctness but in the spirit of helping build a society that doesn’t reduce or minimize its own members to stereotypes and tired, inaccurate analogies.
I want to note that, of course, this issue is not limited to the misuse of phrases or terms regarding mental illness. In middle school, I cringe to report, “retarded” and “sped” were two of my choice descriptors for anything I found unfavorable. I was in college when the Think Before You Speak campaign went live, explaining that it was “not cool” to call people “gay” as an insult or even as a joke. While awareness has been raised and I think we’re doing better, this stuff still happens, and I don’t think we should sit on our high horses and judge others who use this kind of language. Old habits die hard -- I know when I’m very upset about something, I have an upsetting tendency to use the gross, overused pantomime of shooting a gun into my temple. Me! Someone who lives with depression and understands clearly that suicide is the furthest thing from a joke. It can be hard to change our ways, even with the best of intentions.
But while I don’t want to be the PC police, I do believe that this is something we can help each other with. I believe that we don’t want to be a society that uses factual descriptors of disability, of sexual orientation, of mental illness, to carelessly insult others or to casually describe everyday life. It’s a tangible area that we can each work on, as individuals and as communities, to learn to build each other up instead of using our words to relegate others to the dark corners of an ill-defined and poorly understood existence.
As always, I think that the path to compassion is through information and understanding, so I want to explain why it’s such a big problem to talk this way (or to accept when others talk this way).
To understand that this language does those things is to take a step toward understanding those who live with mental illness (or disability, or any other kind of marginalization). As we understand, we become better empathizers, and we’re able to take a step toward loving others more wholly and living with them in a community of compassion and trust.
These days, does anyone think that we could use less of that?
Let’s talk about feelings, okay?
My mom has always told me that I “feel things very intensely.” Beginning in the fifth or sixth grade I began to fill notebooks with angsty, pained, (and painful to read) poems about love and loss (in all the wisdom I could muster from my 12-year-old heart). I have a distinct memory of my high school self becoming so consumed with a book on a family camping trip that I talked to no one until I finished it, and cried inconsolably for hours after I was done (in my defense, though, it was a really sad book). But I couldn’t put the book down, rejoin the real world, and walk away from how deeply it made me feel.
Then, when I began counseling in college and we had started exploring a diagnosis of depression, my therapist asked if I had always “tended toward the melancholy.” While that’s not a particularly flattering way to think of oneself (“why yes, I do identify closely with Eeyore, thank you for asking!”), I thought back on my notebooks and on my general outlook and had to admit that, at times, I did.
This tendency to see things with a bit of an overcast tone, on top of a propensity for feeling any kind of emotion intensely, means that I easily become sad -- and then, quickly, very sad. In a person with healthy coping skills and emotional regulation, this kind of sadness, whether from a book or a movie, or from a personal disappointment, or a tragic current event on the other side of the world, can be a passing feeling that might be remedied by a long walk, a talk with a friend, or a journaling session. But in my own experience with with depression, that kind of sadness -- the kind that should be faced and handled as a part of a healthy emotional life -- can trigger a deeper, more disturbing emotional response. For me, at least, the regular everyday sadness of life’s normal events can be like giving my depression a foothold in my soul, a place for it to grab on and take root.
So as I sank deeply into my depression over the past year or two, I began to avoid certain things that I knew would make me sad. I’ll read a crime thriller at the drop of a hat, but pushing myself to read something that had more emotional depth became off-limits. I can only see this in retrospect -- but I spent a good couple of years reading more far-fetched mysteries and police procedurals than I can count, while ignoring books I’d long wanted to read by favorites like Toni Morrison or John Updike because I was scared of what those beloved writers might make me feel. Likewise, I turned away from movies or TV shows that skew toward the tragic and opted either for sitcoms or, again, crime dramas. I passed by articles in the news that looked interesting and thought-provoking because they were about current events or social conditions that would make me feel sad about the state of the world.
I feared that if I allowed myself to feel unhappy in response to an appropriately sad stimulus, my depressive symptoms would take hold, that I would allow the weight of my illness to pull me further down into the spiral of despair that I experience when I am having an episode of major depression. (This spiral will be the sole subject of a future post, I promise. It will be fun.) I couldn’t let myself do it. It felt like too big a risk to give my depression even a fleeting chance to worm its way deeper into me.
I must state here that this is an observation I am making about myself only, and in retrospect only. I know that many people with depression seek out sad music or other media or news to validate their feelings and to feel less alone in their sadness. Personally, I avoided it at all costs. There’s no right way to experience mental illness (again, more on this another time).
But as I am growing and learning about self-care and becoming well, I’m working on learning the appropriate ways of dealing with normal emotional responses to sad things. I recently watched a speech that made me cry. I knew it would make me cry, and feel sad, and I was tempted to go to bed before it came on, but my husband encouraged me not to miss it and so we watched it together. (Coping skill #1: have someone with you for moral support.) I did cry, and I did feel sad, but then afterwards it felt okay. I did not feel the long, spindly fingers of depression reaching up from the depths of the spiral to grab at me. My husband showed me cat videos that made me smile. (Coping skill #2: laugh at things that are funny.)
And tonight, as I’m writing, we’ve decided to go see “Manchester-by-the-Sea,” a film set in my hometown (woot!) that is supposed to be excellent and also incredibly sad. I have asked myself, and my ever-patient husband, several times this week: “Why do we want to go see something so sad?” And also, “How am I supposed to choose to go do something for ‘fun’ that I know is going to make me cry?” Again, I imagined that after watching it I would come home in tears, emotionally wrecked and feeling devastated about fictional characters to whom fictitious sad things happened. (Coping skill #3: remember that sometimes sad things are not real.)
But I have decided, in a slow but clearly evolving way, that I am not going to be someone who misses out on life experiences like weeping at the end of an outstanding novel, or crying through a touching, phenomenally-acted film, or mourning with the people of another country who have just survived a terrible earthquake, just because it will make me have feelings. Feelings are okay. Feelings are real and raw and sometimes they hurt, and if you are mentally ill then a lot of the time they hurt, but part of life is learning to feel things as they come over you, and deciding what to do with them, and absorbing them into your human experience so that they make you a better, more insightful, more compassionate person. (Coping skill #4: remind yourself that feelings are allowed as part of your human experience.)
On hard days, or in the midst of a depressive episode, there can be wisdom in choosing to filter out some of the things that cause sadness and despair. But on healthy days, through the ins and outs of life, finding my footing as an emotionally healthy person, capable of feeling and gauging and processing my response to life, is one of the best ways to learn self-care and to grow in my understanding and capacity to care for others.
So, in that spirit, I’m headed to the movies -- with a pack of tissues.
So, you’re really sick -- like with the flu, or a stomach bug -- and you cannot leave the house. Maybe you call in to work, or text a friend to cancel plans, and they tell you to “take good care of yourself.” What does that phrase mean to you?
If you’re fighting your way through the flu, it probably means lots of rest. You might think of hunkering down on your couch or in your bed with lots of Gatorade and water, a Netflix show to binge-watch, a caring parent or significant other or roommate to bring you chicken noodle soup. You might think of all the Nyquil you’re going to pop at bedtime to try to get some sleep. You’ll cuddle up under some blankets and doze and pet your cat and groan for your loved ones to bring you tissues. You’re taking care of yourself.
Or, maybe you’re told to take care of yourself when you’re stressed, or overworked, or going through a breakup. Then you might think of soaking in a luxurious bubble bath, wine glass at hand, soothing music in the background… or, if you’re less like me and more like my husband, it could involve a long session of intense video game playing. Self-care means different things to everyone, and that’s a good thing.
The term “self-care,” though, as it’s intended in the mental health community, is a little trickier to get a handle on, and it’s important to clearly define. It’s easy to settle the idea of self-care into a cozy, comfy box that contains only the warm, fuzzy, happy things we do to take care of ourselves. And don’t misunderstand me: all the things above are absolutely forms of self-care, and valuable ones (for those with mental illness and those without)! But now I want to talk about the nitty gritty, hard-fought, hard-won self-care that those of us with mental illness need to do to really learn to value who we are, to know what we need and want, and to love ourselves. (Cheesy? yes. True? also yes.)
In my personal experience, this kind of self-care is not pretty. It’s not the steam of a comforting bowl of soup wafting up toward your face or sinking into a foot massage during a pedicure. It’s raw, and real, and painful, and it’s absolutely critical to recovery.
It’s picking up the phone, of which you are terrified, to call a therapist, whom you do not know and of whom you are also terrified, to seek help.
It’s baring your soul to said therapist, after one session or after many, many sessions, and fighting back or letting forth tears as you allow the true contents of your heart and mind to leak out into someone else’s presence.
It’s dragging yourself from your bed, with long-unchanged sheets, out of your long-unchanged pajamas, to your shower, though you’re unable to believe that you’re worthy of feeling warm and clean and presentable to the world.
It’s being brave enough to go to work, to the grocery store, to the coffee shop, despite the fear that your desperate sadness, your inexplicable hopelessness might just seep out into the world around you, poisoning the innocent people you come across, or showing them how truly indefensible you are.
It’s learning that night after night of bingeing on greasy takeout and reality TV is not indulging in self-care and comfort food, but denying your body the invigoration of a brisk walk and the decency of some vegetables, and teaching it that the many things it does for you each day are worthless and without meaning.
It’s facing the man at the running shoe store who wants you to take a test run in the shoes you’ve tried on, though you’re mortified because you haven’t run in years, because you have realized that you deserve sneakers that will let you move your body and get healthy.
It’s an acknowledgement that what your illness is making you want -- to hide from the world, to stay in bed, to eat all the ice cream, to refuse to make plans -- are not the things that your soul needs to be well. It’s a process of realizing that you are capable of doing things that are not fun. That do not feel good. That make you afraid and anxious and sad and overwhelmed. And that once you do them, you will be a step closer to being a more whole person.
It’s a new year, and thus a good time to talk about the idea of caring for ourselves in all kinds of ways. For me, this year marks a full 12 months of participating in therapy, of engaging with my mental illness, of seeking to be honest with myself about how sick I have been and how much better I want to get.
Each January I make all kinds of promises to myself surrounding self-care, but I’ve come to realize how backwards my motivation has been. I resolved to lose weight because I didn’t like the way I looked -- not because I deserve to be healthy and have more energy. I resolved to read certain books because I told myself I’m not well-read enough -- not because I just love to read. I resolved to organize some part of my house because I felt ashamed at how it looked to others -- not because I deserve to feel peaceful and comfortable in my home.
This year brings many of those same goals, but with an entirely different perspective. I still want to eat better and exercise, to lose weight, to read certain things and clean certain things and on and on. But after a year of evaluating the idea of self-care, I’m no longer doing them out of shame and guilt and embarrassment. I’m doing them to take care of myself in ways that feed my body and soul, because I am strong and I am brave and I can do them and I deserve more.
There will be days of Netflix marathons, and ice cream, and bubble baths, and greasy takeout. But they will be in the company of days of daring myself to do the hard things that I deserve to do, not because I should, but because I can, and because I will be more well because of them.
I've been feeling a little anxious and grouchy the past couple of days, and as I tried to sit with those feelings and forge my way through the day today, I think I've finally realized why: I'm actually scared.
I'm not (for once, my family and friends might think) talking about the election, or about the state of U.S. politics right now. I'm talking about the way our society is treating mental illness, every day, all the time, even as I write. Over the past few days, several events have come to my attention, one after another, that have individually affected me in degrees ranging from a stinging slap to the face to the weight of an unstoppable avalanche pouring down on top of me, pressing me helplessly and fearfully into the ground.
First: Halloween is upon us. My attitude toward this holiday is pretty mellow. I use it as an excuse to read “The Shining” by Stephen King or to watch trashy horror movies on Netflix. I’m not a big fan of dressing up, but I get that other people love it. That’s fine. Live and let live. But on Saturday night, a friend told me about an article reporting that Walmart was selling "Razor Blade Suicide Scar Wound” makeup for Halloween. I felt a pit form in my stomach. Do people think suicide is funny? Or scary? Or, worse yet, both?
I recovered well enough from that unpleasant shock, only to learn the following day that a large costume supplier is selling an "Adult Skitzo" costume that depicts a person (supposedly, I assume from the gag-inducing spelling of the name, meant to have schizophrenia) clad in an orange jumpsuit replete with chains, handcuffs, and a Hannibal Lecter-style mask. The pit in my stomach throbbed, grew, as waves of nausea passed over me. Does everyone think that people with mental illness are dangerous? Are we all criminals-in-waiting, deserving only of a hideous costume designed to make us look unhinged and in need of locking up for the good of society?
Is this who I am, to the world?
Obviously, I know that it’s not who I am. But both costumes perpetuate the idea that that people who live with depression, self harm, suicidal thoughts, or schizophrenia are scary -- scary enough to imitate on a holiday all about celebrating the horrible, the terrible, the most frightening parts of our psyches and society. The existence of costumes like these turn mental illness into a spectator sport and manage to place those who live with mental illness, like myself and so many others, into the terrifying "other" that Halloween is all about.
I know that in the past few years there’s been a lot of uproar over costumes. Personally, I think some folks are too easily offended by, and others far too insensitive to, the negative stereotypes many costumes might perpetuate. As a fairly reasonable person, I try to come down in the middle on this, but in this case, there was no mistaking the visceral reaction I was having. As my husband pointed out, how many people did these costume ideas have to get through to be planned for, made, and marketed? How many people looked at the scar makeup and the schizophrenia costume and thought, sure, these look good, make a few hundred of them and see how they sell. Seriously? How many?
But lest you think that the othering of those with mental illness is confined to the boundaries of the imagination and the world of make-believe, I'll tell you the other part of this, the part that’s making me write furiously, with shaking hands, now.
Over the weekend I learned that on October 18, New York City police shot and killed a 66-year-old mentally ill black woman named Deborah Danner, after being called by a neighbor who reported that Danner was acting irrationally. Suffering from schizophrenia, Danner was in the middle of a mental health crisis. When she waved a baseball bat, an officer shot her twice in the torso, killing her. He didn’t wait for Emergency Services to arrive or attempt to use his Taser instead.
And last night, scrolling through my Facebook newsfeed, I saw yet another disturbing headline. A 23-year-old, pregnant, Native American woman named Renee Davis was experiencing severe depression and suicidal ideation. On October 21, her sister called the local police to report that Davis was suicidal and to ask for a wellness check. Rather than helping her put down the handgun with which she was armed and getting her the help she needed, police shot and killed her.
Writing about these women makes me feel physically ill. My heart is pounding. I feel like a cat is swatting at the butterflies in my stomach. What if my illness gets to a point, someday, that I need emergency help? What if the wrong person comes to my aid? Could my story turn out like Deborah Danner’s or Renee Davis’?
Because this is what it feels like to be categorized, stigmatized, othered. And it’s not just about Halloween costumes, or about being politically correct, or about not hurting anyone’s feelings. It’s about the fact that the Halloween costumes that started this whole train of thought for me are a devastatingly accurate reflection of what is going through the minds of thousands of Americans: if you are sick, and your sickness lies in your brain, you are different. You are other. You are scary.
In extreme cases, if you are sick and your sickness lies in your brain, you are so scary that you’re actually dangerous, and you may even be killed. For being sick in a way that is, despite all our efforts and awareness-raising and painful sharing of personal stories to try to end the stigma, still unrecognizable and even less understandable to the greater population.
Because what happens when your brain is sick is that the world around you stops making sense, and you are unable to interpret the sights and circumstances and cues you face for what they are. They become blurry, ambiguous, indefinable. Maybe paranoia blocks out all sense of reason, or maybe the sudden appearance of an authority figure causes confusion or fear. Waving a baseball bat in the middle of a psychotic episode should signal that a sick person is afraid and confused. Holding a handgun in contemplation of suicide should indicate that a person is in the darkest, most painful and vulnerable point in his or her life. A person with scars on their wrists should not be inspiration for a titillating, naughty Halloween costume.
These are not signs of danger, of interpersonal violence, of fascinating gore. They are indications that we -- those who are acting or have acted in such a way -- do not feel safe. That we are not safe in our own minds. That we are still less safe in the outer world that fails to understand us. That we are scared of being labeled, and dismissed, as other.
Ultimately, these actions of irrationality indicate that we cannot recognize our allies from our demons, that our state of mind has confused the people who are our safety nets with the ones who are pushing us closer toward the ledge. And now, those blurred roles may actually be warranted, because it would appear that the rescuers supposed to come to our aid may not be able to recognize that battle going on within us. Our helpers, in these cases, can become our killers. It’s not enough that we fear being the other; we must now be scared that being other will, ultimately, be the end of us.
I have never felt that the mere fact of who I am, of my existence, is a threat to my own safety. I am a straight, white woman who grew up in a nice town and has had little chance to feel the pain, confusion and isolation of being “the other.” I have a lot of privilege in this world, and I know it. But now that I feel it -- sick, tearful, afraid, helpless -- I know that I am learning a tiny something about how other minority members of our country must feel day to day. This is beyond stigma. This is beyond stereotypes and labels.
This is about being unable to take people out of the box you’ve put them in, and instead labeling that box with a big fat word -- SCARY, or DANGEROUS, or OTHER -- and sealing it up tight, making growth and relationship and humanity impossible. It’s about making sure that everyone -- be they trick-or-treaters or family members of the mentally ill or the children whose minds we are charged with molding as they grow into our newest generation -- knows that we are not like them. That we are to be feared, to be left outside, to be permanently silenced in our bleakest moments rather than to be loved and cared for and helped to safety.
Somewhere, in all of this, we who live with mental illness have lost our ability to be safe and respected while we are sick, and instead have been made out to be dangerous.
It seems that our fellow humans have learned that it is easier to mock the pain they think is attention-seeking, and to label as dangerous the behavior they see as unreasonable, than to look with compassion on the person next to them and try to keep them safe.
We must do better.
A few months back, I was reading a few pieces on The Mighty, one of my favorite websites. It’s a platform for first-hand posts about mental illness, disability, and chronic and rare illnesses (some of my blog posts also appear on there). As I clicked on various links related to mental illness, I came across a post about something called “double depression.” I had never heard the term before, and as I read, the tiny lightbulb in my brain began to flicker and glow, until it became so bright that I wanted to shout, “Eureka!” (or something equally melodramatic). I felt like I had finally figured out why I could sometimes live in the day-to-day of my depression, while other times the illness was knocking me on my rear end so hard that I couldn’t get back up for days.
Double depression occurs when a person who has dysthymia also experiences a major depressive episode. To help us all understand what the heck this means, I’m going to explain these two different types of depression. Then I’m going to give you a ridiculous metaphor for each of them. Then we can talk about how fun it is when they join forces.
Major depressive disorder (MDD), which is what I’ve always been told I have, is characterized by all the things I’ve covered in previous blog posts. It can be emotional: sadness, hopelessness, loneliness, wanting to die. It can be physical: aches and pains, stomach problems, headaches, weight gain or loss. There can be irritability, fatigue, loss of interest in previously-loved activities. Sleeping too much or too little. Typically, those who suffer from MDD experience episodes of acute depression, during which they may feel suicidal or not, may self-harm or not, may function in their daily lives or not. But the key to MDD is that the episodes do end. They may last days, weeks, months or even years, but at some point they stop, and the depression lifts.
The type of depression I did not know about, dysthymia, I would best describe as the mellower cousin of MDD. The symptoms are similar, but while episodes of major depression are likely to come to a more tangible end, the hopelessness, low self-esteem, and disinterest that characterize dysthymia do not. That’s right -- although dysthymia is considered a milder form of depression than MDD, it is chronic. As in, it does not go away. I think one of the best popular culture examples of dysthymia is probably Eeyore -- always plodding along, always pessimistic, every adventure met with a sigh. Eeyore never seems able to pull himself entirely out of the gloom that surrounds him. That’s kind of what it's like to live with dysthymia.
Now, as promised, an absurd metaphor.
Imagine, if you will, a 600-pound gorilla (yes, Wikipedia told me that they can weigh that much) who is determined to beat the living daylight out of you. He sees you as a threat and he is going to attack you with all the weight and strength he’s got. He’ll shake you and kick you and push you around and maybe even bite you. You’re getting the crap beat out of you, but hey -- it won’t last forever. Eventually the gorilla will get bored or feel satisfied that you are no longer a threat, and he will leave you alone. You’re left to lick your wounds and eventually get back on your feet. You’ll have a few scars, but the gorilla will be gone. That’s major depression.
In contrast, dysthymia is the much smaller, cuter-by-comparison monkey that sits on your shoulder. He won’t mortally wound you, but he won’t ever go away either -- he’s always picking at your hair, screeching in your ear, smelling up your house, making your life inconvenient and chaotic and unpredictable. It’s not pretty and it’s not fun. Sometimes it’s painful, but it’s not like you’ll end up in the hospital with any broken bones. The thing is, you will never be rid of the discomfort and exhaustion you feel from dealing with him every single day. That’s dysthymia.
So, what’s double depression? Double depression is when the monkey on your back wraps its arms tight around your neck to hold on, and the gorilla comes at you swinging. You might have learned to live with the little guy -- annoying though he is, he’s your monkey, and most of the time he’s not all that bad -- but now you have to carry his weight and fend off the gorilla who is trying with all his might to kick your ass. You’re less able to defend yourself because the stupid monkey won’t let go, and you’re tired from carrying him around all the time, so the gorilla has an easier shot at you than ever. And then, guess what? When the gorilla finally decides he’s done with you, the monkey doesn’t follow after him and leave you be. He clings on, just like always, so it’s just a little harder to heal and recover. You’re perpetually swatting at the monkey, who won’t leave you alone, and meanwhile, you never know when the gorilla might come back for round two (or three, or four…).
To get back to the real world for a moment: double depression is when a major depressive episode occurs in a person with existing dysthymia. The depressive symptoms you thought you were doing pretty well living with are suddenly compounded, and you are thrown into a deeper, darker place than any you’ve been to before. Your fatigue is no longer nagging, but all-consuming. The minor aches that fade with sleep start to keep you up all night. The passing thought that maybe not much in life really matters is replaced by an unrelenting thought pattern of pervasive hopelessness.
Once I realized that I may have been living all this time with dysthymia, and that my hardest times were the ones punctuated with major depressive episodes, I spoke with my therapist and my nurse practitioner, both of whom agreed that this was the most likely scenario. I can’t say I feel relief at the diagnosis -- it feels pretty awful to be told that my light at the end of the tunnel is likely a hazier, dimmer one than I’d like it to be -- but having a label helps me better understand what I need to do to take care of myself. On the very best days, the monkey on my back lets me put him down on the couch for awhile so I can take a break. I’m learning to love those moments and use them to enjoy life, all the while preparing to pick the monkey back up, and even to face the gorilla once in awhile -- hopefully mustering up more a little spunk and optimism than Eeyore.