when happiness is work

One of the odd roles I’ve taken on in a lot of my friendships and other relationships has been “the happy one.”

The first time someone told me that I was the “happy one” in our particular group of friends, I was…well, let’s say “confused,” rather than “offended,” because it sounds nicer. It wasn’t that being happy is a bad thing–it’s obviously not, and the work I’ve been doing on my happiness project is part of my effort to move toward the whole happiness thing–but that I’ve just never thought of myself as an especially happy person. I didn’t (and often still don’t) think of myself as unhappy, either, just not super happy.

At the time, I asked my friend what she meant by that, and she shrugged. “You look on the bright side of things,” she said. “You find good things in people. You smile a lot. You just come off as a happy person.”

Okay. All fairly true things–I will totally admit to being the sort of warm and fuzzy person who hopes that the person tailgating me on the highway is speeding to deliver a baby and not just being a dick, I have one of those weird smiles that seems to prompt people to talk to me and tell me about their feelings (basically the opposite of resting bitch face. Resting therapist face?), I don’t like cutting people off when what they’re saying seems important. But does that really make me seem like a happy person?

Apparently yes, because over the course of the next several years, more people in various walks of life–coworkers, friends, clients, relatives–commented on my positivity, my bright mood, my smile, my idealism, all that jazz. Meanwhile, there I am, looking around in confusion, because my head feels like a jumble of depression, anxiety, chronic pain, and brain fog, and all the happiness that everyone else seems to see coming off me just doesn’t feel visible to me. In fact, I usually feel like I have to force it to show up.

Spending most of my working years in various “helping” fields, from childcare to higher education to mental health, means that I’ve rather inadvertently put myself in professions that require me to be more emotionally “on” than, say…I don’t know, working in accounting or something (sorry, accountants. I just assume that spreadsheets don’t bring that many feelings to the game). For most of my day, whatever my actual mood might be, I needed to be plugged in to the feelings of the people around me to offer support, advice, problem-solving, insight, etc. I’ve been lucky to work at places where I can be a little more “off” when not interacting with whoever the client base happened to be (students, campers, mental health clients, etc), but it still involves a significant amount of emotional labor on a day to day level that can get incredibly draining, especially when the positive emotions you’re expected to display might not be entirely reflective of your genuine feelings. But when people start taking your manufactured happiness as real, they start to expect it, and then you start to assume that you have to project that happiness at all times.

Being and looking happy, then, turns into a job. This is a problem that other women have talked about all over the internet and I won’t repeat their very good points, mostly because this is more about my personal experience than about my feminism, but then, it can be hard to separate the two. Would I be feeling so nervous about not feeling the happiness I project if gender norms didn’t expect me to be smiling and cheerful to every person I meet? I don’t know.

The big question I’ve always had for myself, though, is whether there’s a difference in my mood when I’m not making the effort to act positive compared to when I am. There is something to be said for the “fake it till you make it” effect, and I found that out the hard way over the past few weeks.

I haven’t been shy on this blog about my struggles with chronic pain and depression. Living with chronic physical and mental health issues isn’t a walk in the park, but they’re my everyday existence, and I find myself generally able, for the most part, take a bunch of meds, put some product in my hair, smack a smile onto my face (HELLO HAPPINESS IT’S SHELLY HOW ARE YOU TODAY) and get out the door. But that’s the thing about chronic issues–they’re chronic. You get used to them. You know what to expect, you know what they feel like, you get a feel for your bodies aches and pains and occasional-oh-hey-it-feels-like-there’s-acid-on-my-skin moments. But when you get something else on top of your usual chronic illness (for example, the ass-kicker of a flu I came down with two and a half weeks ago and am still getting over), all bets are off. The things that usually work stop working. All the energy you’ve saved up to get you over the hump of compensating for crummy joints or nerves or serotonin receptors is suddenly gone, and the spoons you’re used to having to get through your day promptly disappear.

Over the last two weeks, all of the positive energy I usually try to summon up to project my happy attitude–to be “the happy one”–went out the window. No more Shelly happy face. I was stuffy and cranky and sleepless and exhausted; I was coughing constantly and couldn’t breathe through my nose (my nose! the only part of my body that I can usually rely on to work! wtf??), I was, in conclusion, a mess. I meandered from my bed to my couch to my bathtub, I slept constantly, I mustered a few smiles for my nephews and family but overall didn’t really even try to be sociable during our Passover seders with my in-laws. I was cranky toward my husband and often asked to just be left alone, and didn’t take much of time to ask how he was doing (except for the occasional thank-you for the many, many sweet things that he did for me while I was being a brat toward him).

It sucked.

But now that I’m finally on the mend and had a bit of my spark back yesterday and today, I’ve started to realize that what sucked about it wasn’t that I felt like crap, but that I was wallowing in feeling like crap. Don’t get me wrong, the flu is miserable, and I think everyone’s entitled to a few “woe is me” days through the worst of it. And in all honesty, throwing a crappy flu on top of an already messed-up body should probably earn me a few extra days. I didn’t bother with any of the usual self-care I took on even on my worst fibro flare days, and losing that probably made things worse. I took baths, but spent them just staring at the wall instead of lighting something that smelled nice and putting on an audiobook or some music. I put the same pajamas on again and again. I didn’t brush my teeth. I didn’t eat and barely drank any water. It felt a lot more like a bad depressive episode than a physical illness, and I think that my total lack of attempt to do anything to take care of myself because I was just in such a bad mood could have very nearly turned it into one.

It’s still strange to think of myself as the “happy one,” as I continue to struggle with the same health issues (both physical and mental), but the past few weeks gave me some insight into just how much I miss that positivity, mostly manufactured or not, when it’s not there. I don’t know if the positive attitude and forward-focused mindset I project are becoming parts of my personality that I like more than I resent, but my time spent feeling miserable and sorry for myself certainly didn’t help me with my healing process.

When we’re kids, no one really tells us that happiness can feel like work, and that sometimes you have to make your own, and that sometimes it sort of feels forced. But I think that I’ll take a little bit of manufactured happiness over my self-sustained misery bubble any day.

It might be faking it until I make it, but I think the faking it helps.

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a grateful letter to my body

Dear Body,

So, the last few days have been pretty rough on all of us. After we went on our Super Fun Big City Adventure last week, you basically crashed. Friday to Sunday was a non-stop disaster of exhaustion, poor sleep at night and constant inability to stay awake during the day, bone-deep physical weariness, emotional and mental fog, and delirious stumbling around the house unable to really think, hold things, eat real food, or drink more than water. It was a pretty miserable experience all around.

I guess I should probably apologize. I put you through a hell of a ringer last week–we did a lot of travel in a seriously short amount of time, and you don’t tend to do super well with travel, late nights, lots of walking, and huge amounts of physical/mental engagement and stimuli happening all at once. That’s my bad, and you were a champ for putting up with all that craziness. I knew your limits, and I pushed you past them. I’m sorry for that.

We’re on the mend now, or getting there. We had another rough night’s sleep last night, but I think we broke five hours, which is pretty great. And we even managed to get a cup of coffee into our system today, and had the mental energy to see our clients and even do some writing when we got home. Let’s keep our fingers crossed for decent sleep tonight!

Body, I want to express some gratitude to you. I don’t do that very often because I’m often so frustrated with you. We’re in our mid-twenties, what feels like it’s supposed to be the healthiest time of our life, and instead I often feel overwhelmed with irritation and frustration at my inability to travel, to run, to keep plans with friends, to tolerate certain fabrics and temperatures. But you are my body, the only one that I have, and even though you are often exhausted and in pain, I owe you my thanks.

Thank you, body, for the ability you give me to experience the world. You are the gateway of my senses, and without you I would not be able to see the smiles of my friends and family, to hear music or laughter, to touch my dog’s soft fur, to smell freshly brewed coffee in the morning, to taste cool, sweet water. Thank you for being the conduit through which I feel the sun on my face and the wind in my hair.

Thank you, body, for carrying me through my life. Sometimes our steps are slow, sometimes they are halting, sometimes we feel like we are not moving at all, but nonetheless we are taking steps. Thank you for the press of my feet to the ground, holding me to the earth and keeping me moving.

Thank you, body, for helping me to learn my limits. Your warnings let me know when I am pushing myself too hard, and you tell me, clearly, when I have crossed a line. I don’t listen to you like I should, and I owe you better.

Thank you, body, for being my ally in this adventure of health and illness. We have changed so very much together, and have sometimes fought against one another, angry and frustrated and sad and frightened, but I think that we are learning, slowly, to find a peace. Thank you for continuing to teach me and guide me, even when I don’t listen to your lessons.

Thank you, body, for holding my heart, that has received so much love. Thank you for my hands, for helping me to write stories into existence from nothing more than dreams, for allowing me to craft the narrative of my life in pen and ink. Thank you for my toes, which have wiggled in sand and mud and grass and water. Thank you for my arms, which for all their aches have nonetheless held so many embraces. Thank you for my back, which for all its pain allows me to carry my head and my mind. Thank you for my head, where my migraines and fogs and confusions still make room for thoughts and dreams and questions and goals.

Thank you, body, for growing with me. Thank you for your ability to change and heal and endure.

Thank you for being mine.

Love,

Shelly

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#readingwednesday: is it me or my meds?

“On Prozac, Sisyphus might well push the boulder back up the mountain with more enthusiasm and creativity. I do not want to deny the benefits of psychoactive medication. I just want to point out that Sisyphus is not a patient with a mental health problem. To see him as a patient with a mental health problem is to ignore certain larger aspects of his predicament connected to boulders, mountains, and eternity”

– Carl Elliott

 

I’ve had a complicated relationship with psychotropic medication.

 

When I was in college, I spent a lot of time being not-so-gently nudged into therapy by multiple people (my family, my friends, my then-boyfriend who is now my husband). While it might sound odd coming from a now-therapist, I really wasn’t into it. It seemed very weird to be talking to a stranger about my problems (cue ironic trombone noise), and I didn’t like the idea of doing it–it set off major alarm bells with what I now know is my anxiety. But hey, hindsight is 20/20, right?

 

While I wasn’t in therapy in college, my sophomore year was when I started seeking medication to specifically deal with my fibromyalgia and migraines, and suddenly found myself on a series of antidepressants. I didn’t realize it then, but SSRIs and SNRIs are often used to treat physical  conditions as well as psychiatric ones, and that meant dealing with all of the many side effects, some of which exacerbated the very conditions they were supposed to be treating.

 

Now, working as a mental health therapist for a child and adolescent agency, I often find myself referring clients for medication evaluations with our psychiatrists and psychiatric nurses–sometimes at their request, sometimes at the request of their parent or guardian. In our practice, clients receiving medication are, with some rare exceptions, also required to be in counseling with a therapist. I would estimate that probably about 60% of the clients in our practice take psychotropic medications, which leads to a lot of questions about the nature of how we refer kids for meds, how we decide when they need meds, and what it means to use psychotropic medications on young, still-developing personalities and minds.

 

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I first read David Karp’s Is It Me or My Meds? for a sociology course in college, but found myself drifting back to it a few weeks ago after having a conversation with a teenage client about her difficulty in deciding whether or not she wanted to give meds a try to manage her depressive cycles. Part interview report, part research project, Karp’s text explores the relationship between “pills and personhood”, looking at the ways in which people of different ages, backgrounds, and mental illnesses relate to their diagnoses and prescriptions.

 

When I read this book back in college, my knee-jerk reaction was almost to recoil. It freaked me out to learn about the ways that psychotropic medications changed the way people think and feel. I didn’t like how easily it seemed that psych meds were prescribed and the high rates of people–especially kids and teens–on multiple meds at once. (In all honesty, this is something that still worries me–the CDC reports that one in thirteen American kids between the ages of six and seventeen takes at least one psychotropic medication, and rates of psych medication prescription soars when kids are involved in the special education, foster, and juvenile justice systems.) That said, even in my first read-through back in college, I could see that Karp is careful to take a nuanced approach to understanding psychotropic medications, and for good reason–Karp discloses in his preface that he himself has taken antidepressants for years, and had spent a significant amount of time struggling with the changes he noticed in himself when he began taking medication.

 

Reading the book again as an adult and a therapist, I have a different experience. I’m more appreciative of the way that Karp works to understand the entire system of each person he interviews–looking at the whole person, the context of their experiences. In the work I do now, I’d estimate that eighty-five to ninety percent of my clients come to me with a trauma history–some kind of experience of pain or fear that had a significant impact on the way they currently function. I’ve learned the way that trauma can disguise itself as ADHD and Oppositional Defiant Disorder and depression and anxiety, and while I deeply appreciate the ways in which psychotropic medications allow my clients to function while we work through the underlying issues that contribute to their symptoms, I also understand that without the therapeutic component of their treatment, medication alone would not be sufficient to keep most of them functioning.

 

There’s a reason why the recommended treatment for most mental health disorders is to utilize a combination of medication and psychotherapy. Two of the many medications I take currently to manage my physical chronic health conditions are psychotropic, and even though those meds aren’t prescribed for to treat my anxiety and depression, I’ve found that I do considerably better managing those symptoms when in therapy than I do while taking those same medications without therapy. Is It Me or My Meds? isn’t the most academic or always-engaging of texts, but it is a great read for anyone who is trying to explore the decision to start medication, and I would absolutely recommend it for clinicians who want to improve their insight into what their clients might go through when they make the decision to start–or to stop–psychiatric medication.

 

Karp’s book asks its main question right in the title, and in all honesty, it doesn’t find a real answer. As clinicians, we tell our clients that medication can help them be the best, safest version of themselves; as patients, we do our best to hope that medication isn’t changing who we are. There is no single experience with psychotropic medication, but each person who takes them makes that decision carefully, and often uncertainly. If nothing else, what I take away from this book–and back to my clients and myself–is that medication is a step on a journey to living as one’s best self.

 

It’s not the destination.

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For more great images about conquering the mountain of mental illness, check out The Doodle Chronicles on Tumblr.

world mental health day 2015

Days that draw attention to mental health and mental illness are bittersweet for me.

Working in the mental health field means that I am, on a daily basis, on the front lines of helping others on the road to recovery, whether that means teaching and practicing coping skills for depression and anxiety, processing and overcoming trauma, finding alternatives to self-harm or restrictive eating or substance use, or any other number of therapeutic activities. My clients range from five to twenty, and each of them has their own story, their own journey, and they’re all at different points on that journey. I feel so blessed, every day, to be there to watch them grow and change as they learn more about themselves and take steps—slow steps, baby steps, whatever is the right pace for them—to get to a place where they are safe, and comfortable, and ultimately, hopefully, happy. As stressful and infuriating as my job can be, I deeply love the work that I do.

For me, the part of World Mental Health Day that is the most difficult is the part that is personal.

To be a therapist with mental illness is to feel like a walking contradiction on good days and a hypocrite on bad ones. It’s constantly wondering whether or not it’s safe to self-disclose, not to clients, but to co-workers and supervisors, wondering if they’ll treat you differently if they know that you might be closer to clients at the beginning of their therapeutic journey than to those at the end. It’s teaching coping skills and feeling hope for your clients and frustration with yourself, the constant questioning of why these skills don’t work for you, or at the very least, why you can’t just teach them to yourself.

A note: You can’t practice CBT on your own brain. It doesn’t work.

I don’t know exactly what DSM codes my own therapist has on her paperwork for me, and I don’t spend my own time with that brick of a book diagnosing myself. I know enough about my own mind to acknowledge that I have struggled with depression and anxiety for years, likely for longer than I’ve understood the concepts. It’s only been in the last few years that I’ve realized that the way my mind works isn’t typical. It’s not typical to have to spend five minutes taking deep breaths to work up the courage to make a phone call, to lie awake at night terrified that a conversation in fourth grade might come back to haunt you, to be suddenly struck, in the middle of a perfectly lovely day, by a wave of thoughts that everything you’ve done amounts to nothing, and that you’ll never be the person you thought you could be when you were little. It’s not typical to have to force yourself through things like taking a shower or getting dressed because the very idea of movement seems overwhelming and exhausting, to burst into tears at the smallest provocation, to sit in a bathtub and wonder what would happen if you just put your head under water and let it stay there. It’s not typical to wonder what the world would be like without you in it, to glance at telephone poles and road dividers and wonder what would happen if your car slid on wet pavement or ice. To not want to kill yourself per se, but to think, sometimes, that it would be okay to fall asleep, and stay that way.

Combining all of this with a chronic physical illness compounded things over the past few years. Study after study has found correlations between chronic pain and depressive disorders, and they’re so wrapped up together that it’s impossible to distinguish cause and effect. The addition of pain to existing depressive and anxious symptoms can take an okay day to one where leaving a bed is impossible. Guilt runs rampant; you tell yourself, you should be able to do this, you’re weak, you’re letting everyone down. This is why no one wants to spend time with you.

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(The rational therapist’s mind knows that these are intrusive thoughts, but an anxious mind is louder, a depressive mind more poetic, and the rational mind has a soft voice and is easily overpowered.)

This year, I took the radical step of putting myself into therapy, and that step in and of itself was terrifying. I was scared that a therapist would tell me that I wasn’t fit to work with clients, that until I got my own shit under control that there was no way I could practice as a clinician. After the brief, horrific therapy attempt I made in college, trying again, in a clinical community as small as the one in Berkshire County, made my skin crawl. I’ve been hugely lucky to find a therapist who is kind and comforting and candid, who allows me to take of my therapist hat while using my own background and knowledge to help me understand the way my own mind works—or rather, doesn’t. These last few months in therapy have been terrifying in their vulnerability, but I feel so, so glad that I’ve taken that step.

But even therapists aren’t immune from stigma, from repeating the same harmful statements that keep people who could benefit from treatment from seeking it. I recently had a conversation with a professional who’s been in the field longer than I’ve been alive, and her offhand comment of “Well, there are some people who can solve their own problems, and others who need someone to help them do it, but it really shouldn’t be for everyone” made me feel nauseous and judged. I still feel my heart jump into my throat when I mention my therapist to a co-worker, and I watch their micro-expressions for the tiniest hint of judgment or disappointment. I put on a façade of functionality, because even I have convinced myself that there is a time and place to acknowledge my own mental health needs, and those times are limited, those places few.

I hesitated before writing or posting this tonight, and part of that hesitation came from the internalized stigma I’m still trying to overcome. But World Mental Health Day is important. It’s so important that we tell these stories, that we take these thoughts and feelings out of the darkness and bring them forward so that people know that they are not alone. Depression and anxiety are still daily struggles for me, and will almost certainly remain so for a long time, but even compared to a few short months ago, I feel safer, more prepared to manage those feelings simply by acknowledging that they are there.

For any of my friends who are struggling with mental illness, I urge you to take a step—however small—to move to a safer place. Confide in someone. Start a journal. Reflect on the positive moments in your day, whether it was a hot cup of coffee or snuggles from a pet. Visit a therapist, if that’s something you can do. Ask for help, if you’re feeling unsafe. But know that you are not alone. That however loud anxiety brain shouts, whatever poetic words of despair depression feeds you, that you are loved, and cared for, and the world wants you to stay.

Walking On The Earth

on doing happiness (shelly’s happiness project, part 1)

Over the last several months, I’ve had a lot of changes and transitions. Many of those were quite positive–Husband and I moved south to be much closer to our families, both of us started new jobs, we got a brand-new baby nephew. Lots of good things! At the same time, there was  a lot of stress. My health has been up and down over the last few months, as is the nature of chronic illness, and the constant hectic-ness of our schedule has meant that I found myself spending almost all of my free time crashing on the couch with a laptop and a blanket.

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As wonderful as laptop internet time is (and it really is wonderful), I started noticing that by the end of each weekend, I felt like I hadn’t really done anything positive with my time. And at the end of each month, when I would try to reflect back on how I’d used my days and weeks, I started to realize that doing nothing wasn’t making me feel relaxed or refreshed, but frustrated and defeated. There’s a big difference, I’ve found, between the delighted sigh of “I did nothing this weekend!” and the unhappy realization of “oh…I did nothing this weekend.” The former is a great feeling! And sometimes it’s the feeling we really need to have, especially those of us with chronic illnesses and limited spoons. But the more days of non-activity that passed by, the more I started to realize that I just wasn’t happy with what I was doing with my time. I wasn’t happy with a lot of things.

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I think I should stop for a moment and say that I wasn’t unhappy in the general sense of the world. Many things that were happening made me very happy. I have a wonderful marriage to a partner who is supportive, caring, and understanding of my needs and limits. I have a silly and adorable dog who is effortlessly able to make me smile. I do good work with my clients. I get to spend far more time with my family members than I could over the last few years. We were financially stable and secure. My life was very, very full of love and blessings. The unhappiness I was feeling was very much localized in my own activities and emotional engagement, and the changes I wanted to make were almost entirely focused on my own behaviors.

When I started to realize that I wasn’t feeling happy, I sat down to make myself a list of things that I thought would make me happier. About ten minutes into this little exercise, it occurred to me that everything I was writing down was vague and noncommittal: “more exercise”, “less screen time”, “socialize more often.” I was basing my list on a definition of happiness that doesn’t really fit what I need to make my life feel more positive. “Being happy” felt very passive to me, and it was too vague to feel meaningful.

Once this actually clicked, I started trying to figure out a definition of happiness that worked for me. Was happiness a feeling? A process? An activity in and of itself? There was a lot of variability, and I wasn’t sure how to conceptualize it in a way that made sense to me. In the end, I still haven’t quite figured out how to define happiness, but I’ve definitely concluded that happiness needs to be something that is actively practiced, not achieved. (Sidebar: I’ve had this epiphany about other things in life that are normally thought of as nouns as well, particularly marriage. Marriage as a process = constantly evolving, changing, and improving. Marriage as a noun = ALL DONE EFFORT FOREVER, GOODBYE PANTS AND SHOWERS. I may be over-simplifying, but you get the idea.)

So for me, happiness is something that you do. Great. From there, it was a matter of figuring out how to actually “practice” happiness in a way that would actually make a difference to my emotional health. Strangely enough, this was actually easier than figuring out what I wanted happiness to be in the first place–I already knew about the areas where I was unhappy, so it was just a matter of identifying what I wanted to change about those different things. In the end, I narrowed things down to a few tasks I could do throughout the days and weeks to bring some more positive engagement with life into my daily behaviors.

My plan for the next several blog entries is to write a bit about some of the different changes–whether behavioral, environmental, emotional, or mental–I’ve tried to make at home and at work to improve my happiness practice. It’s entirely possible that these reads will be extremely boring for anyone that’s not me, but maybe some of you will find them interesting, or even start working on your own happiness practice! 🙂

can we spoon?

Over the last few years of cohabitation, my husband and I have developed a fairly comprehensive evening to-do list to prep for the next morning, inspired by UnFuckYourHabitat. It’s stuck to the refrigerator on a piece of notebook paper, and reads:

  • Pack school/work bags for tomorrow
  • Wash dishes in sink
  • Set up coffee/tea/breakfast
  • Make lunch and put it in an obvious place
  • Put keys in an obvious place
  • (For me) Pick out clothes for tomorrow, including accessories

Our friends tend to look at this and make comments about how organized our system is, which is great as an ego boost, because we are, in fact, pretty organized. The down side here is that we don’t have this system to be organized.

We have this system because on any given night, we don’t know how I’ll be feeling the next morning. The nature of chronic illness, especially pain disorders like fibromyalgia (which is a party, let me tell you), is one of unpredictability. You never feel great, but there are definitely days when you wake up and, before you even open your eyes, you know it’s going to be a bad one.

Our system is in place because we have no idea if, in the morning, I’ll be able to roll out of bed and get things done, or if my husband is going to spend the forty minutes before he leaves for school walking the dog, feeding her breakfast, and then rushing through his own morning routine because I’m going to be spending every one of those forty minutes convincing my body to get out of bed and trying to figure out what my level of functioning will be. Am I feeling dizzy? Will that disappear after I take my meds? What hurts today? Can I wear the outfit that I picked out last night? (Which is a whole different adventure, and could probably be its own blog post. Sore back? Say goodbye to those heels. Oversensitive skin? No tight or abrasive fabric. There’s a reason my wardrobe has shifted from skinny jeans to bohemian dresses/tops and gentle-top leggings over the last few years, and it is 100% due to pain issues.) Can I drive? Can I type? Can I do my job?

Hence the streamlined routine. If my brain is in a total fibro fog, I’m not going to be able to go on a search for my keys, organize a lunch, etc. I tried once and ended up with a Tupperware of tofurkey (not a sandwich. Just the tofurkey.) and a red bell pepper. Needless to say, I ended up with Subway. If I’m having a bad day—even a “medium” day—I need to be able to move through morning steps as easily and smoothly as possible.

Sometimes I wake up, and I know it’s going to be a good day. When this happens, it’s a treat, and it’s nice to still be able to have a predictable morning routine, and I usually end up having time to sit and relax and watch last night’s Daily Show or something. That being said, I’m not going to plan every day around the schedule I get on a good day, because then the bad days would go like this:

The thing about chronic illness is that things that used to be easy—such as, y’know, getting up and making coffee—suddenly become tasks that need to be planned and organized. Energy that used to be endless now needs to be carefully rationed to get you through the day. Christine Miserandino of But You Don’t Look Sick (a truly fantastic blog) talks about this in The Spoon Theory, which boils down to this:

At the beginning of the day, you have a finite number of spoons. As you move through the day, doing various tasks that cost energy or cause pain, you spend your spoons. Sometimes you can borrow from tomorrow’s spoons, but then you have to get through tomorrow with fewer spoons. And we’re not talking major tasks like heavy lifting or being chased by a bear. These are tasks like showering (changes in temperature plus water pressure on oversensitive skin equals pain), getting dressed (have fun with those buttons and your stiff fingers), going up and down stairs (woo, knees), concentrating (when your brain feels like it’s moving through sludge, long bouts of concentration are exhausting). Congrats, you’ve gotten to work and you’re down four spoons. How many do you think you have left? It takes budgeting to a whole new level.

What this means is that when you do have, shall we say, high-spoon things to do, you spend your spoons really quickly, and it takes a long time to get them back.

For example: moving.

Moving is a huge process, with multiple stages, especially if you’re doing it yourself (sans moving professionals). It’s packing. Then it’s carrying all the things you’ve packed into your car. Then it’s doing your best to clean up your previous abode. Then it’s driving to your new abode (or, in our case, our temporary abode while we waited for the previous tenants to vacate our new abode), however many minutes or hours that takes (for us, it was a 7-hour drive, not counting stops). Then it’s carrying all your stuff into your new abode (stairs!). Then it’s unpacking. And organizing. All this combined with the mental energy of planning, adjusting to a new place, breaking your emotional connection to your old place, and trying to figure out how to call the new place “home.”

Needless to say, moving as someone with chronic illness is exhausting. You end up borrowing so many spoons from future days to get through the process that by the time there’s any downtime whatsoever, you end up on your back. I left my first home on a Friday and we moved into our new apartment on a Wednesday, and I spent most of Friday through Sunday curled up on the couch feeling miserable and thanking my lucky stars, individually and by name, for my dog’s ability to sense when mom doesn’t have the energy to play and my husband’s ability to comprehend that “fibro day” is essentially code for “I am so sorry but moving is just not going to happen today.”

(The dude deserves an award; seriously, I’m going to make him one. Maybe on a paper plate. Most Understanding of Chronic Illness, A++, Would Marry Again.)

And when it’s all over, you pick yourself up. Because what else can you do? You put on your war paint, whatever it might be—makeup, cardigan, winged eyeliner (major shoutout to spoonies who can get their shit together enough to get winged eyeliner; you are champions)—and you go out into the world.

Because here’s the thing about invisible illnesses: they are, as the name implies, invisible. When you break a leg, there’s a visible aspect of that: you have a cast, you have crutches, people can look at you and go “oh, crap, that person’s got a broken leg, I should help them!” With invisible illnesses, you have to tell people all the time—and, more often than not, the response is, “Oh, that’s not better yet?” Or, even more likely, “but you look so healthy!” And, of course, the reason you look healthy is because you’re doing your best to make sure people can’t see that you’re falling apart, so you can do things like, I don’t know, get a job.

And what this leads to is a sort of paradox. You want people to know you’re sick, because if you don’t, there’s no way they can understand why you can’t do something that seems to them to be a simple task, or why you can’t go out with them after a day at the office, or why you can’t be as active as you once were. But on the other hand, you want to keep some things hidden—partially because you don’t want to be “the sick one”, but also because we live in a world that is profoundly difficult to navigate when one is disabled, particularly invisibly disabled. We want to be seen as strong and capable and functional because those are characteristics that are valued by society. Even in our closest support systems—our friends, our families—the admission of disability is nerve-wracking, because we don’t want to change the way people think of us. This is especially true with our parents: we have spent our whole lives attempting to show our parents that we are capable and independent and “totally grown up now, jeez!” and to admit that no, we can’t do the things we used to do so easily, that tasks that once were taken for granted are now borderline impossible. We have to navigate the fragile balance wanting to preserve our independence and wanting to call for sympathy and comfort food.

(And, because I know she reads my blog: Hi, Mom! Can you bring some Annie’s with you when you come to visit? And some veggie chicken nuggets?)

Perhaps the most frustrating part of this is the never-ending aspect of it. Chronic illnesses are, in fact, chronic: they don’t go away. Often, they just get worse. So the balance between feeling awful and trying to look healthy, act healthy; the budgeting of spoons, the disclosures, the anxiety of looking at big tasks and trying to figure out just how to get through them while attempting to project, constantly, an image of ability—these things are our realities, our partners’ realities, our families’ realities. Permanently.

Last week, I had lunch with a dear friend of mine with EDS, another chronic pain disorder. Our conversation turned to living with chronic illness. “It’s funny,” she told me. “When you’re a kid, you fake being sick so that you can stay home from school. Now, we fake being healthy so that we can get jobs, go to school, and just…function.”

“And then we shoot ourselves in the foot,” I said. “Because we don’t look sick enough.”

“So it goes,” she said.

So it goes.

if you’re going through hell (keep going)

As someone who has always favored stability over uncertainty, I’ve been feeling totally unbalanced by the number of changes that have happened over the past few months. Some of these changes have been truly amazing (marrying the love of my life, starting (and almost finishing) an awesome internship working with some of the most wonderful, supportive people I have ever met, adopting a crazy but adorable dog) and others less amazing (losing my modest but important income at the end of my grad assistantship in May, having my chronic pain go from “manageable” to “barely tolerable”, having my marriage be a bit more long-distance than originally planned, losing some of the function in my hand thanks to some broken bones and torn ligaments), but change in general can make me feel like I’m treading water and barely keeping my head afloat.

A week from Friday, I’ll be leaving my amazing internship and heading up to Maine. I’ll be going from having a lovely little place to live and a job (well, an unpaid internship) to, as of now, a friend’s couch and a continuing job search. This means more changes–lots of them–very quickly: destabilizing my living conditions, figuring out how to move more stuff (wedding gifts: awesome, yet so bulky!) with less space in the car (because dog), trying to find an apartment without (as of this writing) a job offer to figure out the budget, finding a new vet, trying to see my own doctor to figure out the cluster-you-know-what of my own health, adjusting the pup to a new place and a new routine as Husband heads back to school and I (hopefully!) head into work, trying to re-establish a support system of friends so that we don’t all go off the walls. Needless to say, my anxiety is through the roof, bringing my stress-induced pain levels along with it. I’m holding regularly-scheduled prayer circles to hold off the stress-induced migraines; all are welcome to join in.

UnFortunately, there is a time and place for showing how anxious you are, and (fun fact) working as a therapist with traumatized children is really not one of them. My general rule of thumb: these kids have been through enough crap, so they definitely do not need my crap on top of it. Noooope nope nope they do not. So there might be a lot of this going on in the moment from when they leave my office to when I close the door behind them:

but the rule is that from the minute they enter the office to the moment they leave, my problems are not in the room. I’m there for them, they’re what matters, etc, etc. That’s how it works. My job is to be there for my kids, to listen to them, and to let them feel like they’re first. They have had plenty of time being second (or third or fourth or fifth or not even listed) priority, and I want to make sure they have at least one hour of the week where someone is there just for them.

To help out on this venture and to get more positive thinking into my life, I went and downloaded the Transform Your Life: A Year of Awareness app. It’s a nifty little app that gives you an inspiring quote and a daily assignment to try and incorporate the quote into your life for that day. Cheesy? Yep, 100%, but it gives me a moment of thoughtfulness in the mornings when the alarm chimes and I read the quote or think about the daily message. And I’m getting to the point where a few moments of positivity are enough to give me a boost for at least an hour or two, which can be the difference between actually getting some progress notes done or just putting my head down on my desk and being dead for a few minutes. So, yes. Mindfulness. Hooray.

On August 5th, the quote was one from good ol’ Winston Churchill: “If you’re going through hell, keep going.” The day’s assignment: “Today, whatever you’re going through, keep going–and smile!”

toothless2bsmilez

(AM I SMILING YET. AM I DOING THE THING.)

Being told to smile when I’m not happy is one of those things that makes me want to hit my head against a desk. I have always been of the belief that you don’t owe anyone a smile. Now, again, given my line of work, I’m also not going to go around looking like Grumpy Cat (who is apparently totally misunderstood, poor critter), but putting a big smile on my face that a kid who is hyper-alert (which almost all my clients are) is going to see through in a millisecond and then get suspicious over isn’t the solution, either. But the first part of the assignment, I like.

In health fields, particularly mental health and trauma fields, we talk a lot about resilience. There’s a lot of back-and-forth about the definition of resilience–is it a construct, a characteristic, a process, an outcome, etc–but to me, what it really boils down to is the essence of that quote: resilience is going on when you’re going through hell. And “hell” comes in all shapes and sizes–medical trauma, social trauma, emotional trauma, physical trauma, illness, abuse, mental health, adjustments, pain, relationships, conflicts, the list goes on forever–but to be resilient is to go through it. And that doesn’t always mean taking on your issues head on, solving every problem you’re facing all at once. Sometimes it’s taking a breath before you respond to a statement that made you angry. Sometimes it’s going to work even though your body hurts and your social anxiety is through the roof. Sometimes it’s making it home and watching Netflix instead of having a cigarette or a drink. Sometimes it’s having one glass of wine instead of four. Sometimes, it’s just getting out of bed.

There’s a sense of freedom that comes with acknowledging the quiet forms resilience can take. We put a lot of emphasis on boldly tackling issues, even in the language we use to describe resilience: “power through” your problems, “face your problems head-on”, etc. In fact, acknowledging personal struggle without also providing a list of the things you’re doing to counteract those struggles is often seen as asking for sympathy, or just whining. For those with chronic struggles, people get sick of hearing about the same things: “Aren’t you over that, yet?” To own the softer forms of resistance, to say, honestly, “I can’t solve this, but I am still trying, and I’m getting through every day, and that’s enough” gives a certain sense of release, like letting out a breath you’ve been holding so long your chest has started to hurt. It’s a good feeling, even though your ribs still hurt for a few moments until you’ve really started breathing again, and then you wonder why you ever stopped.

Last week, I was sitting with one of my clients, working on a puzzle, nursing a headache and trying not to think about the epic to-do list that’s been building up in the margins of my planner.  After a few moments of working in silence–my usually-quiet client had just spoken for almost four minutes straight, and was taking some time to recover from her surprising moment of verbosity–my client said, “Miss Shelly, you seem tired today.”

In clinical practice, there’s a line between appropriate and inappropriate self-disclosure. When working with kids, you need to be even more careful about this line. But kids are often more perceptive than adults, and if you’re trying to hide something from a kid who’s hyper-vigilant, they’ll figure it out, and it’ll hurt their feelings. This particular client has had to deal with a lot of dishonest adults, and I didn’t want to be one more of those. I put my puzzle piece down. “I am tired,” I said. “There’s some stuff going on for me at home that is a little stressful, and it makes me feel tired.”

My client looked at me. “I feel that sometimes, too,” she said. Apparently satisfied with this part of the conversation, she turned back to working on the puzzle.

A few moments later, she turned back to me. “What do you do when you can’t fix it?”

“You do your best,” I said. I handed her another puzzle piece and she tried to slot it into place upside-down, then reversed it and put it into the picture correctly. “And then you try again.”