No pill can cure mental health stigma

November 6, 2014November 6, 2014 / marisalancione / 1 Comment

Recently at a concert at the O2 arena in London, Lady Gaga confessed to her fans that she takes antidepressants for depression: “I take medication every day for mental illness and depression and [I] don’t feel bad about it.” She then went on to serenade her fans with a rendition of her hit song “Born this Way.”

Why would she feel bad for taking an antidepressant? Stigma.

Up to 9% of Canadians take some form of antidepressants.

But how can stigma exist in Canada when Canadians are among the highest antidepressant users in the world: “with as much as 9 per cent of the population on one depression-fighting drug or another, according to a new study from the OECD.”

If 9 per cent doesn’t strike you as a lot, do the math. The Canadian population was last estimated at roughly 35 million. That’s over 3 million Canadians taking some form of psychopharmaceutical. That’s a heck of a lot of people.

Stigma about medication and mental health exists because no one talks candidly about it. It’s great that public figures like Lady Gaga are talking more and more openly about mental health, but it’s not enough. Confessing you take medication for depression is only step-one in combating stigma. The rest is talking about the nuances of what taking medication is actually like. Demystifying the belief that it’s a magic pill (it isn’t) or that antidepressants are exclusively bad (they aren’t).

Over the course of the past 10 years, I think I have taken more pharmaceuticals than the average person will take in their lifetime. I play a weird memory game with myself and I try and run through all of the prescriptions that I have filled over the years. The names of SSRIs, SNRIs, and antipsychotics have become like a mantra: Zyprexa, Ativan, Effexor, Lithium, Wellbutrin, Risperdal, Seroquel, Clonazepam, Zoloft, and Celexa.

But it hasn’t always been this easy to confess that I have taken and am taking these medications. It took me over 10 years of silent suffering to admit that I have a mental illness and that I depend on medication to function. I’ve started openly talking to friends and family about how medication makes me feel, how it intrudes on my life, how it messes with my memory and recall, and despite knowing that it manages my mood that it’s a struggle to swallow that little pill every morning and night.

To be honest, I’m embarrassed that I probably take more medication than my 80 year-old grandmother. When we have company over, I’m like a squirrel, stashing my pill bottles like nuts to keep them away from prying eyes. I spend five minutes every Sunday filling my pill dispenser that I refer to as my “pill hotel.” No one knows that I need to remember to take my medication with me if I go out. I worry about taking my pills on time. If I take a certain pill too late, I’ll never wake up the next day. If I forget a dose, I have the symptoms of a heroine addict going through withdrawal. I don’t tell people about how I worry about going through customs with all of my pill bottles in my carry-on, lest I become like this lady. My medication causes my memory to really suck. And at this very moment I’m struggling with forming sentences and articulating words.

But it’s not just these weird idiosyncratic life interruptions of taking medication. I often worry about the toll these pills are taking on the organs processing them. They all pass through the liver which is terrifying. Not only that, but most antidepressants and antipsychotics also wreak havoc on your metabolism and interfere with certain chemical receptors in your brain that cause weight gain. So, I’m about 30 pounds heavier than when I started taking psychopharmaceuticals and that’s something I’ve had to learn how to cope with. It sounds like an okay trade off — being heavier and alive versus depressed and suicidal — and I agree. But with depression comes an inherent lack of self-esteem, so it’s hard facing the mirror. And if all of that isn’t enough, one of the medications I take also negatively impacts cholesterol. So at 28, I’m worrying about cholesterol levels and have my blood taken regularly. There’s also the odd side effect of excessive sweating. Some people are lucky and it only happens at night but others are not (embarrassingly, I’m in the “are not” category). And let’s not even get into what happens if I choose to become pregnant… that issue is its own blog post.

So if it’s so shitty taking these medications, why do over 3 million of us decide to take them? Tell me what the alternative is. Therapy! Of course there’s therapy, but those in crisis (e.g. suicidal or psychotic) know that expressing how we’re feeling is basically impossible. So even if there are studies that show that antidepressants may do more harm than good and that they don’t work, if you’re in crisis and feel like ending your life, the ability to take a pill that might stop your brain from turning against itself is sometimes enough to keep you holding on.

If you are among the lucky population who does react well to medication, taking a pill may allow you to work through the problems you’re facing in therapy and hopefully you won’t have to be on medication for the rest of your life. But the reality is that for some of us suffering from chronic mental illness, therapy isn’t enough. With Bipolar Disorder, I don’t think a form of therapy exists that would allow me to manage my mood better than taking Seroquel and that’s a reality I’ve started to come to terms with. I console myself with the fact that Seroquel is a better alternative to Lithium (for me).

Living with a mental illness, whether it’s depression, anxiety, bipolar disorder, or schizophrenia, is always a balancing act. You have to balance out what’s worse, the symptoms of your illness or the side effects of the medication, and it isn’t always easy to decide. Some people decide not taking medication is the way to go, but many people decide pills are a good way to deal with their illness. Whatever your decision, never let anyone tell you that you’re weak for having a mental illness or that taking a pill is the easy way out. We’d never say this to a diabetic taking insulin or a cancer patient going through chemo. Whatever you’re facing, you’re a mental health warrior on an incredibly difficult journey that is often filled with more downs than ups.

So I urge my fellow mental health advocates to continue talking candidly about what life is really like for those of us taking medication and living with our illness. At the end of the day, it’s all about ending stigma and unfortunately there’s no pill for that.

A version of this originally appeared on Healthy Minds Canada. It was also published by Huffpost Living Canada.

Why busy is making us sick

November 6, 2014 / marisalancione / 1 Comment

I came across a blog post by Anne Thériault over at The Belle Jar where she addresses our society’s glorification of busy. She writes:

We live in a culture that praises “busy” as the best thing a person can be – both in terms of employment and personal life. We’re encouraged to cram as many experiences and events and accomplishments into a 24 hour period as possible […]. Even when you’re relaxing or having fun, you’re still often tapping into that busy mindset. “Am I sufficiently relaxed? Should I be having more fun? What can I do to optimize this experience? If I’m not feeling good, is that because I’m just not trying hard enough?”

Her words resonated with something that I have always struggled with, but am finding even more difficult since I started my sick leave. Am I busy enough? What did I accomplish today? Will I be embarrassed if someone asks me, “What did you do this weekend?”

It’s not that I don’t want to lounge on my couch all weekend binge-watching Downton Abbey, but I fear the judgement, both self-imposed and external. I’m a driven, high achieving perfectionist and the farthest thing from lazy. So, for someone to think I’m lazy because I wasn’t “busy enough” over the weekend – well that’s pretty much the worst thing ever.

Now that I’m not at work, I am struggling with the cringe-worthy question, “What do you do all day? Aren’t you bored?” To be perfectly honest, I’m not bored at all. Most days I wake up late because the increase of my medication has me in a comatose/zombie-like state in the morning. And since I’m still struggling with anxiety, I can’t have a coffee to snap me out of it.

When I do finally manage to drag myself out of bed, I’ll surf the internet and maybe schedule some tweets. If I’m lucky, the desire to write will strike me, but more often than not it doesn’t, since stringing words together has become nearly impossible. If the weather is nice, then I’ll pressure myself into going outside for a long walk (exercising is a good achievement, right?). If not, I’ll guilt myself into going to the gym (did you know cardio increases serotonin? Plus, the side effect of this medication is weight gain so I have to watch what I eat and exercise regularly).

But is this productive enough? I feel like since I’m home all day, I should be “keeping house.” That means, cleaning, doing laundry, groceries, cooking or other things that households need to operate. But there are only so many times that you can clean the bathroom before your partner starts to look at you funny. So I fill my afternoons with drawing, reading or watching movies. But who watches a movie at 3 p.m. in the afternoon? What’s the use of drawing or reading? It doesn’t fulfill a demand of something that needs to get done. It isn’t an accomplishment about which I can say at the end of the day, “Well, at least I did this.”

But why do I need to feel productive while on a sick leave? Because our society values busy. If you’re not overworked, stressed out and completely on edge, you’re not doing it right. I actually asked my therapist if she thought I was “busy enough” and she looked at me in confusion.

“What do you mean busy enough?”

“Well, like am I doing enough to stave off a depressive episode. The weather’s changing and I’m really nervous about falling into a depression. I can already feel it coming. Am I doing enough to manage my anxiety? What else could I be doing to help support this process and get back to work faster?”

“You do realize it doesn’t work like that, right?” It was my turn to look like a confused puppy, my head cocked to the side. “You’re on leave because you’re sick – not because you aren’t trying hard enough. It’s a convalescence for your mind. So the fact that you’re worried about being busy is problematic.”

I’m sick, not lazy. My body may be fully functional, but my brain isn’t. This is the problem with mental health. It’s a mind-body tug of war that I always feel like I’m on the losing end of. I’m trying to regain a healthy lifestyle and limit stress. I’m on the precarious journey of balancing my medication. So sometimes, if all I do is watch a House Hunters marathon, that’s okay.

I’m not going to say that Theriault’s blog post or my therapist have stopped stopped the nagging voice that calls me lazy. However, what has changed is the fact that I now tell it to shut up because, to quote Thériault, “Fuck busy.”

This post originally appeared on Healthy Minds Canada.

Retreat not defeat: Self-Stigma and Mental Health

November 6, 2014November 6, 2014 / marisalancione / 5 Comments

I have been stable for the past four years, but now my bipolar disorder has resurfaced. It could have been triggered by stress, meds or the weather change — or equal parts of all of these things — but the reality is that I’m unwell.

Demi Lovato can rock it, why can’t I?

Saturday highlighted this, as I was in a full hypomanic episode. Upon reflection, it had been building all week but I didn’t realize it. I had been having extreme anxiety all week and had been very agitated. I wasn’t sleeping and I was extremely volatile. By Saturday, this agitation and anxiety had turned into excessive, delirious energy that despite working out for two hours, taking anti-anxiety meds, and trying to take a calming bath, it wouldn’t go away. My speech was rapid and bouncing from one thought to the next. I couldn’t sit still. I was moving like I was on speed. I had great ideas (I saw a girl with half of her head shaved and thought that would be an awesome look for me, too. And while it might be an awesome look for me, it’s not a decision to be made while hypomanic).

It was when I said this that my husband asked if I was hypomanic. Calmly, he described my behavior and I trust his judgement enough to know that if this is what he is seeing, it’s true.

I’m equal parts frustrated, disappointed and defeated. It has been so long since my mood swings have been so volatile and explosive. It has been a long time since I felt manic. It has been a long time since I have felt so completely out of control.

Under the suggestion of my doctor and psychiatrist, I have taken a leave of absence from work. To be honest, this has been the hardest thing I have had to do in my life. I feel like I have admitted defeat to my illness. I feel like my leave of absence is showing the world that my illness makes me weak and that I can’t hack it in the real world.

Rationally, I know this is totally unsubstantiated. I have a supportive partner, family, and friends. I have previously disclosed my illness to my boss in preparation of writing this blog and she had demonstrated my illness didn’t taint her view of me. But there’s nothing I love more than feeling guilty, so I still beat myself up.

What about self-imposed stigma?

I try to situate my mental illness like someone who has cancer. If a colleague took a leave to get chemotherapy, would I judge them? Of course not. I would probably send them an email wishing them well or send flowers to their hospital room. But we don’t think of mental illness in this way because it’s symptoms are not visible. My moods are visible — I’m agitated, I’m teary, I don’t sleep — but the “proof” that the actual illness exists isn’t visible. It’s my word and a doctor’s signature on some paperwork.

We often speak of stigma in terms of external judgement — how others perceive those with mental illness. But a form of stigma we don’t often talk about is the self-imposed stigma. Will I get fired for taking a leave of absence? Will I be given less interesting projects because they’re less stressful? Will they think I’m less capable because of my illness? Do my colleagues think I’m lazy and just don’t want to work? Are people whispering about the crazy girl who had a breakdown? I am so consumed by thoughts about what other people might be thinking about me, I neglect what’s most important — what I think and need.

Last week, these self-imposed judgments were spinning in my head increasing my agitation and anxiety. In an attempt to help, my husband and I set out on a walk of undetermined length. As we walked, I explained all of these thoughts to him.

“If I look back, I am lost,” Danaerys Targaryen. A Song of Ice and Fire by George R. R. Martin.

“I’m regretting taking this leave of absence. Maybe I could take back the paperwork that had been submitted. I could go to work and have my medication readjusted — I could handle that. I didn’t really need this leave of absence at all. But on the other hand I’m so tired and angry — what if I blow up at work? I already snapped at one co-worker when I normally wouldn’t. I could lose my job. Also, I was sobbing at my desk on Tuesday. That’s not right. No, I do need this leave. It’s good for me. But on the other hand…”

After listening patiently to my rambling and often contradictory thoughts for the better part of an hour, he finally said something:

“I know deep down you know that this is the right decision. In the 10 years we have been together, this is the first time I have seen you choose yourself over other people. I’m proud of you.”

This stopped the self-stigma in its tracks. He reminded me that this leave is only a minor setback. I haven’t surrendered to my illness, I’ve just retreated. No general would continue when the battle is surely lost. A general would regroup, tend to the wounded, gather reinforcements, and re-strategize. And that’s all I’m doing. I may have lost this battle, but there’s still a war to win.

A version of this post originally appeared on Healthy Minds Canada and The Huffington Post’s Stronger Together.

My battle with depression and anxiety

November 6, 2014November 6, 2014 / marisalancione / 3 Comments

If a shoe is going to drop, please let it be a Louboutin.

Living with a chronic mental illness often feels like waiting for the other shoe to drop. Well, the proverbial shoe has dropped (it’s stylish at least). I’ve been struggling for a while, but I’m finally coming around to admitting it. Despite seeing therapists on and off for nearly 10 years, I still find it hard to communicate how I feel. But even more difficult is being honest with myself about how I am feeling. So I guess this is sort of a litmus test. Will confessing how I feel get me out of denial or will I continue to keep my head in the sand and ignore it?

I’ve been battling semi-regular panic attacks for the past six months. My first panic attack in years happened in March. As with most panic attacks, they happen at the most inopportune moments. This particular one happened during the middle of a concert. I was at a bar that was packed with drunk hipsters, tossing their bodies carelessly to the music. I began to feel claustrophobic among the ever-increasing press. The bass of the music reverberated in my chest, amplifying my pounding heart. The bar was too hot. The walls were closing in on me. I couldn’t catch my breath. My heart felt like it was going to explode out of my chest. I had to get out of there. My husband and I snaked our way through the crowded bar, each time someone bumped into me, a jolt of adrenaline coursed through me like an electric current. By the time we made it to the door, I was in the throes of a full-blown panic attack.

These situations are incredibly frustrating. As I was leaning against the building, among the smokers and couples making out, I couldn’t help but cry. I was having such a great evening before this. My husband and I enjoyed an incredible dinner before the concert. We were hanging out with friends, listening to an amazing band. And then I had to leave before they finished their set. Compounding my anxiety was the fact that the friends I was with had no idea what was happening. As we left, I mumbled excuses about having to catch the last metro.

Panic attacks are like getting the stomach flu right before an event. Except instead of knowing before that you were cancelling to puke in the safety of your home, you’re suddenly vomiting in public (lovely imagery, I know) and rushing out of the door.

After this first attack, I started seeing a therapist (who was a former psychiatrist) for the first time in about four years. She’s an incredibly lovely lady. She suggested that I exercise more and cut out caffeine and sugar. I started working out every day, reduced my caffeine (I haven’t had a coffee that wasn’t decaf in three months) and tried to avoid sugar as much as humanly possible. Except, none of this helped and the panic just got worse.

As my anxiety levels increased to nearly intolerable levels, sleep became a joke (despite already taking medication that is supposed to help me sleep). I can’t tell you the last time I have slept through the night. Finally in May, after not sleeping for about four days, I was given anti-anxiety medication. I often pair my nighttime pill with my anti-anxiety meds, but I still wake up in semi-terror, feeling like I have forgotten something important. Other nights I just toss and turn unable to sleep at all.

But lately, it’s more than panic plaguing me. An encompassing sadness has attached itself to me like a shadow — following me wherever I go, no matter what I do. I’ve had this feeling before, it’s certainly not new to me. It’s just been a while. I know it’s depression waiting in the wings. I know that if I don’t fight it hard enough, it will envelope me completely. So everyday I force myself out of bed and go to work. I force myself to keep plans and socialize because I know that if I don’t, I’d spend my weekends in bed, reading or watching TV until Monday. I know that depression is never fought by being a hermit. Sometimes it works and I end up enjoying myself out with friends but other times, I just wish I was in bed.

Nothing comes easily right now — including writing this. Stringing words together has always come easily to me and it’s frustrating to feel like there’s a dam blocking my flow of words (perhaps that’s why I resorted to a scatalogical simile earlier).

But the worst part of all of this is watching the concern on my husband’s face. I know as I stare silently into space as we watch TV, his mind is running through worst case scenarios. Is she thinking about killing herself? Is this going to result in another hospital stay? Will I catch her self-harming? How concerned do I need to be?

You may be thinking that these scenarios may seem a bit extreme, but the fact is that we’ve gone through all of them, and only four short years ago. My parents have been extremely supportive through the ups and downs of my illness, but they don’t have a choice — I’m their kid. My husband always had the option to leave and he didn’t — even when I have repeatedly encouraged him to.

Even if his worst case scenarios have happened in the past, the reality of this recent sadness (I am still reticent to name it depression, for now) is that I’m not in that headspace. I refuse to resort to self-harm at 28 years old. I’m not thinking of suicide as a viable option because I see the value of my life. And for the first time in my illness, I’m actually taking positive steps to help stave off depression.

The first step was recognizing the persisting sadness — it’s been longer than a week, this is more than a bad mood. The second step was making an appointment with my therapist. And the third, and probably the most important step, was sharing how I was feeling with my husband and parents (my main support system). This third step has always given me the most trouble.

It’s not that these steps will guarantee that I will ward off a full blown depressive episode. I’m terrified that it could still happen. I’m intimidated by the thought of changing my medications and dealing with new side effects. I’m scared that I might have to take a leave from my job. I’m horrified by the potential of another hospital stay.

But at the end of the day, even if all of this happens, at least I know I tried. And that’s something.

A version of this piece originally appeared on Healthy Minds Canada. It was also published on The Huffington Post’s Stronger Together.

Memoirs taught me more about my mental illness than doctors did

November 6, 2014November 6, 2014 / marisalancione / 1 Comment

Since I started to share my mental health story with the public, people keep telling me that I’m brave. As flattering as that is, I don’t think I’m particularly brave because many before me, and many after me, will share stories that are more compelling, filled with more struggle and told much more eloquently than my own. But the reason I chose to start sharing my story is because I found strength in other people’s; they became a life raft that I clung to when I was in a bad spot, couldn’t figure out what was happening to me or just needed to feel like someone understood where I was coming from.

The doctor is in

When I was first diagnosed with bipolar disorder, I had never heard of the illness and knew nothing about it. The psychiatrist explained it vaguely as having peaks and valleys in your moods that aren’t “typical.” He briefly described hypomania and depression, both of which I had already experienced, but he gave me no insight into how to manage these peaks and valleys or how my life could or would be forever impacted by this diagnosis. I left his office with a script for Lithium, another appointment to see if I had levelled out and a list of unanswered questions.

You’re probably saying to yourself, well maybe he was just a bad psychiatrist — and you’d be right. But frankly, I’ve never met a good one. To me, a good psychiatrist is sort of like Bigfoot or a UFO. People say they exist and have told me of their encounters with them, but I’ve still never seen one with my own eyes.

Psychiatrists have repeatedly discredited my lived-experience with depression, anxiety and bipolar disorder. One psychiatrist told me that I wasn’t really depressed because “real” depressed people didn’t shower or get out of bed. Another said that I was too calm to be experiencing panic attacks (oh, maybe I’ll just come in when I’m in the throes of a panic attack — would that prove that I’m having one?) And then there was the truly awful, which only happened about two years ago. He patronized me about pregnancy while on medication, despite my assurances that pregnancy wasn’t in the cards for a number of years. He also inferred that I shouldn’t actually have children because they could “get what I have.” (Didn’t you know that having a mental illness makes you a horrible monster who should be hidden from the world and we should be forced to become sterile? He would have fit in perfectly with the Victorian-era doctors).

So now, looking back on my psychiatrist’s lack of explanation, I’m not shocked about his unhelpfulness. But that day, I left his office completely baffled. So, like anything I don’t understand, I started to read about bipolar disorder. I armed myself with The Diagnostic and Statistical Manual of Mental Disorders (DSM). I started with the incomprehensible definition of bipolar disorder in the DSM, written in jargon by doctors for doctors. Unsatisfied with that I started to read psychology articles that explained how important sleep and exercise was or how eating a healthy diet was integral to managing your mood. Everything that I read also talked about how stress could trigger a “mood episode.” Although none of this talked about how to avoid stress in your day-to-day life, or how to speak with your spouse about your feelings or what to do if you can’t sleep.

I also read about how psychopharmaceuticals were typically marketed to women. (Did you know Valium was referred to as “Mother’s little helper”?) and that the diagnostic categories in the DSM have a long history of being extremely gendered. (Did you know that the 19th-century diagnosis of hysteria, which was almost exclusively a female malady, actually comes from the Greek hysterikos for “suffering of the womb”?)

As interesting as all of this is, none of it helped me understand myself in relation to my illness. Nothing talked about what it was like to try endless medications and have none of them work for longer than two years. They didn’t talk about how Lithium made eating dairy products unbearable or how it made me incredibly dizzy all of the time. It didn’t talk about how taking Seroquel would affect how and when I go to sleep or how crappy it is to get blood tests every couple of weeks. Or how expensive medications are. They didn’t talk about what it’s actually like to be on a psych ward or how no one can possibly understand why you’d consider suicide as a viable option. None of what I read described what I was going through.

The best thing I ever did was to leave the academic texts behind and turn to memoirs written by people who live with mental illness. I don’t know what brought me to this place — maybe some vain hope that somewhere, someone else was experiencing what I was going through. And thankfully that’s exactly what I found.

These stories are told from the front lines of mental illness from a variety of perspectives; addressing gender, occupation, socioeconomics and race. The authors write candidly about suicide and self-harm, they detail the difficulties of maintaining relationships through the ups and downs of their illnesses, they explain uncomfortable side effects of psychopharmaceuticals (my memoir will be called: “May cause excessive sweating and weight gain”). They talk about the strange camaraderie that forms on a psych ward as you trade war stories of your worst panic attack, botched suicide attempts and which medication gave you the worst side effects.

These stories made me realize that It doesn’t really matter what the DSM or the psychology articles said about me, mental health and what I should be experiencing. What was important was my experience. That is the reality of the illness.

What these memoirs gave me that the academic articles never could was a sense of community. It didn’t matter that the authors had different experiences or diagnoses from my own because I could still see myself in them — they were still telling my story. They understood. Feeling understood, even if it’s by someone you’ve never met and will probably never meet, is sometimes enough to keep going when you’re feeling frustrated and fed-up with the system.

This is why sharing our stories about mental health is crucial. Our stories could save a life or at the very least give someone the hope to keep fighting.

Interested in reading some memoirs on mental health? Check out my Mad Books.

This post was originally published at Healthy Minds Canada. A version also appeared on The Huffington Post Canada Impact.