What anti-stigma really means

Call this one a brilliant thought that I had in the shower the other day.

There are plenty of anti-stigma campaigns related to mental health.  In many cases, the goal of these campaigns is simple, noble and necessary: to defeat “mental health challenges in the workplace and at home.”  This is vitally important work.

There’s good news related to that though.  In many areas, anti-stigma campaigns have already done their job.  For example, a poll taken in my home state of Pennsylvania (March 2017) shows high levels of comfort in terms of working with someone with a mental illness, a vast improvement over previous levels.  While there is still a long way to go, this poll shows significant movement in the area of mental illness.

I was thinking about this poll the other day, and it had me thinking: What does anti-stigma really mean?  Obviously we need to continue to work on critical areas like discrimination and access to healthcare, but I’d argue there’s more than that.

My argument is this: The most powerful sense of stigma is self-stigma.

Consider this 2012 article, which describes self-stigma as when “patients agree with and internalize social stereotypes,” resulting in:

•Patients often think that their illness is a sign of character weakness or incompetence.
•Patients develop feelings of low self-esteem and become less willing to seek or adhere to treatment.
• Patients anticipate that they will be discriminated against, and to protect themselves they limit their social interactions and fail to pursue work and housing opportunities.

As a result, patients find themselves less willing to seek treatment and social support, leading to lower rates of recovery.

This realization has had me rethinking how I approach the notion of anti-stigma campaigns.  Of course they should be focused on ensuring that all of society views people with mental illness not as sick freaks who are weak, but as real people suffering from real disorders that can be treated like any physical illness.  I want to push society to a place where all of us – those with mental illness and those without – view people who are suffering from a mental illness the same way that someone views a cancer patient.  No one who suffers from a mental illness should do so in fear, shame or silence.  They should talk about their therapy appointments the same way a cancer patient discusses chemo or someone with a broken leg discusses physical therapy.

I suppose, then, that what I am saying is this: Anti-stigma campaigns shouldn’t just address societal stigma.  They should address self-stigma as well.

As always, I welcome your thoughts – am I onto something here?  More importantly, have you found any anti-stigma campaigns that fulfill what I am describing?  Let me know what in the comments!

The importance of telling your story

This is a bit of a different entry: Partially standard, but also partially self-promotional.  Fair warning!

As I’ve discussed before, I made a very conscious decision, about three years ago, to tell my story about my experiences with anxiety and depression.  I made this decision because I thought it was important to put a face to these two largely misunderstood and under-discussed disorders, and because I realized that doing so would help fight the stigma that still surrounds both of these illnesses.  A good friend of mine also told me that going public would change my career in a very dramatic way – he was completely right, in ways that I totally failed to anticipate.

Three years later, this public conversation has evolved into something more.  I’ve always enjoyed writing, but had basically given up the art of writing fiction.  That changed around 2015, when, during one of my down periods, I decided to try it again, remembering the joy and therapeutic value I got from it.  Reading Fan Girl by Rainbow Rowell at around the same time certainly helped remind me!

That, in essence, was the start of Redemption, my fiction book that will be premiering in the first half of 2017.  I’ll have more to say as the book gets closer to release.  The basic plot is this: A group of young adults find themselves transported onto a spaceship, and they have to save the world. What makes this one a bit different is the main character, who suffers from anxiety and depression. Sounds familiar, right?

If you are interested, I discuss the book, my own battles and the importance of telling your story in this podcast with my friend Kim Plyler of Sahl Communications.

Obviously I wrote this book to tell a story, and I think it’s an important one: Depression and anxiety are real, they are treatable, but they don’t have to stop you from doing important things and living/enjoying your life.  I discuss all that and more in the podcast, and I hope it’s something you can listen to!

Reimagining Electroconvulsive Therapy

I had the pleasure of attending an event earlier this week in which another local elected official personally discussed his own experiences with anxiety, all in the name of an anti-stigma campaign by our local chapter of the National Alliance for Mental Illness.  One of the speakers at the press conference was a psychiatrist who discussed stigma surrounding mental illness, but he got a little bit more specific: He discussed ECT, or Electroconvulsive Therapy.

Electroconvulsive Therapy was once one of the cruelest treatments for mental illness imaginable.  It’s common use in American began in the 1950s and was largely brought into public view by the film One Flew Over the Cuckoo’s Nest.  It became a controversial treatment option, and with good reason: Patients were often treated against their will and with dangerously high doses.

That being said, that’s no longer the case.  Indeed, to say that the therapy has changed is an understatement.  From the Mayo Clinic:

Electroconvulsive therapy (ECT) is a procedure, done under general anesthesia, in which small electric currents are passed through the brain, intentionally triggering a brief seizure. ECT seems to cause changes in brain chemistry that can quickly reverse symptoms of certain mental illnesses.

The article goes on to note that ECT is used when other treatment – medication and therapy – is less effective.

Is it still risky?  Sure, like any therapy, there is the potential for side effects, including confusion, memory loss and other complications.  That sounds bad, but most of those side effects are also temporary.  That, and let’s be honest: Can you find an effective drug without potentially problematic side effects at this point?  Nope.

How effective is ECT?  Well, according to this article from Psychiatric Times, very: 60-90% of people have a positive response.

If you’ve ever read this blog before, you know that the basic gist of my entire mental health crusade is anti-stigma oriented.  It didn’t really hit me until the press conference I attended how that stigma remains powerful when it comes to specific treatment modalities.  Multiple studies proved that ECT is an effective way of treating depression and mania that is otherwise treatment resistant, but older forms of its operation have convinced many people that it’s a terrifying and dangerous way of trying to rid yourself of depression.  Science has evolved to the point that this is no longer the case, and it is vitally important that we recognize this truth.

What you should know if you love someone with depression or anxiety

In the course of my +15 year battle with mental illness, I’ve experienced many emotions that aren’t directly related to the actual depression/anxiety.

One of the most prominent of those is a tremendous feeling of guilt.

I’ll be honest: Loving someone with depression, anxiety or any mental illness sucks.  It just does, and I’ve experienced it from both ends.  You feel so helpless, you don’t know what to do, what to say, you always feel like you are walking on eggshells…it just plain sucks.  And I’ve always felt so bad for my wife and for my kids, who have seen me at some of my worst moments.

I’ve been lucky: I think most of the relationships I’ve had over the course of my life have been healthy ones, and that’s to say nothing of my wonderful wife.  In an effort to figure out how to better help me with my mental illness, she once came with me to my therapist in order to get a better grasp on how to pull me out of an anxiety attack.  This is one of the kindest things I think she ever did for me.

Mental illness is a difficult thing to describe.  It’s hard to convey the hopelessness of depression, the sheer terror of an anxiety attack, the slavery of addiction.  It’s even harder to explain it if you are actively in the throws of it.  When I’ve been at my worst, there have been so many things I’ve wanted to say to the people who love me or care for me, but haven’t been able to find the words.  So here are a few.

First: Don’t think you can make us better.  Suffering from depression has sometimes felt like flinging out a lifeline to someone, anyone, searching for hope before drowning…but it’s still okay.  We don’t expect you to heal us…at least we shouldn’t.  That’s not your job, and even if someone you love does expect that, that’s not fair.  No one should expect you to cure them, to save them.  Love and support is all you can give, and that’s all anyone can reasonably expect of you.

Second: You don’t have to understand.  You don’t have to know everything that we are going through, largely because we may not be able to communicate it at that particular moment.  That can be one of the most difficult things, knowing that someone you love is in pain and not quite being sure why.  As difficult as it can be, let that part go.  Just focus on trying to get someone through that difficult moment.

Third: Your primary job needs to be to get someone through a crisis.  From there, turn to the professionals.  I can’t emphasize this enough.  You may feel incredible guilt and pain at not being able to heal the person you love.  Say it with me, over and over again: It is not your job to fix what is broken.  Support is the only thing anyone can reasonably expect.

Fourth: We’re not always going to be up for talking about it.  But that doesn’t mean we don’t want you there.  Sometimes, sitting there, holding our hand is the best and only thing you can do.

Fifth: Mental illness is not an excuse – ever – for poor treatment.  Understand this.  Mental illness is never an excuse for bad behavior – it may be the reason, but not an excuse.  If someone is making a legitimate effort to find their way out of the darkness, they deserve your love and support.  If they refuse to seek help, it becomes an entirely different matter.

Sixth: Everything you have to offer may not be enough.  Despite your best efforts, despite herculean levels of love, support, care and affection, it may not be enough.  You have to understand that the mental state of the person you love may continue to decline, and that isn’t your fault.  You cannot hold yourself responsible for the declining mental state of someone you love and someone who is ill.

Seventh: Don’t be afraid to reach out for help.  You alone may not be enough to get someone through a crisis, but if someone else is there, don’t hesitate to reach out.  When I’ve had some of my worst moments, my wife connected with my family and friends – if the option is available to you, do the same.

Eigth: Odds are, we’re really, really sorry.  Like I said earlier, I can’t tell you how badly I’ve felt for the lack of control I’ve endured for my own emotions, how that has effected my life and my behavior.  Trust me, it sucks every day to know that my own mental illness may lead to my kids having their own challenges one day.  That being said, if you love someone with mental illness and they’ve experienced these feelings of guilt, I’d encourage you to ask the person you love the same thing my wife has asked me: “So, what are you going to do about it?”  I may not be able to help the way I feel, the disorder I suffer from, but I can control my decision to seek treatment as necessary.  Tell the person you love to get help.  Tell them you love them.  Tell them to use those feelings of guilt as a motivator to be better, for themselves, and for you.

There’s more, but this is just my perspective, my thoughts.  I’d love to hear yours.  Please comment below, from either perspective – that of someone who is mentally ill, or someone who loves someone who is.  What do you wish you knew, or want to communicate?

Fangirl: The book that reminded me that Writing = Therapy

As I’ve said before, one of the things that has helped me cope with my anxiety/depression issues.  There’s a few reasons for this, and I’ll get into that shortly, but I wanted to write what basically amounts to a thank you note to Rainbow Rowell, author of Fangirl, and talk a little bit about how I found a wonderful creative outlet…and, maybe, how you can too.

First, my personal history.  Ever since 8th grade, I’ve loved to write.  Like most young, male teenage authors, the first thing I ever wrote was…uhh, Star Wars fan fiction.  It was terrible, but that’s completely besides the point.  At the time, it made me extremely happy, and why not?  It gave me the opportunity to create, and feel like I was part of a franchise that I adored.  During my teenage years, writing continued – I wrote two full-length novels (unpublished, of course, probably because they were pretty bad).  In college, as the anxiety and stress continued, I tried my hand at poetry.  Again, it gave me…something.  The chance to express what I was feeling, and in putting it on paper, leave a piece of it behind.

What I remember the most about these novels, even more than their plot, is that they helped me cope.  Novel number one was about my family history, the loneliness that came with it and just being a teenager in general.  Number two was working through some of the challenges I had in my family at the time.

Both novels gave me hope.  They gave me a sense of control.  And in my worst, most loneliest moments, they gave me something to hold onto.  Not for nothing, but novel #2 never made it through revisions.  Once I came to peace with what was happening in my life, I more or less stopped writing it.

This was all in high school.  Fast forward fifteen years: I’m married, two wonderful kids and a State Representative.  To my surprise, I managed to achieve a dream and become a published author, but a non-fiction book: Tweets and Consequences.  

It was around the first half of 2015 that I hit a rough patch with my depression, arguably one of the rougher ones I had hit in years, maybe even since college, when my depression and anxiety really first began/exploded onto the scene.  At the time, I remember feeling misreable and just so helpless, searching desperately for a way out that I just couldn’t find.

What wound up pushing me to a better place was writing.  And what helped get me there was Fangirl by Rainbow Rowell.  From the book:

In Rainbow Rowell’s Fangirl, Cath is a Simon Snow fan. Okay, the whole world is a Simon Snow fan, but for Cath, being a fan is her life-and she’s really good at it. She and her twin sister, Wren, ensconced themselves in the Simon Snow series when they were just kids; it’s what got them through their mother leaving.

Reading. Rereading. Hanging out in Simon Snow forums, writing Simon Snow fan fiction, dressing up like the characters for every movie premiere.

Cath’s sister has mostly grown away from fandom, but Cath can’t let go. She doesn’t want to.

Now that they’re going to college, Wren has told Cath she doesn’t want to be roommates. Cath is on her own, completely outside of her comfort zone. She’s got a surly roommate with a charming, always-around boyfriend, a fiction-writing professor who thinks fan fiction is the end of the civilized world, a handsome classmate who only wants to talk about words . . . And she can’t stop worrying about her dad, who’s loving and fragile and has never really been alone.

For Cath, the question is: Can she do this? Can she make it without Wren holding her hand? Is she ready to start living her own life? And does she even want to move on if it means leaving Simon Snow behind?

The book resonated with me because the main character, Cath, is clearly having major adjustment issues to college (as I had) and discovering who she is.  She uses her writing to cope and get her to a better place, and the book details her struggle in terms of finding a voice that is authentic and truly belongs to her.  Cath is clearly a talented writer, and the book explores her writing journey, meshing with her adjustment to college, family separation, romantic experiences, academic struggles and more.  I’d also argue – and many others have also made this comment – that Cath is clearly suffering from some form of depression.

And that is exactly where the book hits a chord for me.  I remember there being one scene where Cath is in an advanced writing class with older students, and the professor – a big time author, if memory serves – is asking the class why they write.  One student answered “therapy.”  And that’s a note that just rang so, so true to me.

For me, writing was always a therapy for a variety of reasons:

  • It allowed an escape.  An idealized world where every situation could be reasonably thought through, all alternatives explored, and all potential problems dealt with accordingly.
  • It allowed me the chance to work through problems, to put myself in someone else’s shoes.  In a sense, I think writing allows you to sort the various parts of your head and put them somewhere better.
  • It allows you to mark the moment.  And I don’t mean remember.  I mean something stronger.  To carve it into your consciousness and make sure that the emotional core of an event – everything you are trying to deal with – are always remembered.  Every feeling, every sensation.
  • You can play God.  Play the hero, play the villain, whatever you want.
  • Ideally, you can work through your past, and channel it into something good.  I think that’s an important theme of my overall mental health journey: Once I realized I could go public, and help other people in the course of doing so, I became a better public official and a better person.

To those of you who write, in any form, for mental health purposes – I feel you.  And to those of you who don’t – maybe give it a go.