Minimizing Our Illness Only Hurts Ourselves

We have all been there. We are having a rough day, feeling under the weather. Our mental illness is wreaking havoc, making it difficult to even function. Yet when someone asks if we’re okay, we force ourselves to smile and reassure them that we’re fine.

Our eyes are puffy from crying and our world feels like it is collapsing beneath our feet. Yet, instead of being honest about how we are feeling, we force ourselves to smile and we make a half-hearted joke about allergies and it being that time of year.

We laid in bed for hours the night before, unable to sleep because our anxiety had our mind racing for over half the night. When we finally managed to pass out from exhaustion, our sleep was spotty, restless and riddled with anxiety-laden nightmares. Yet when someone points out we look tired, we force ourselves to smile and remark about how there’s never enough hours in the day to sleep as much as we would like.

Our stomach rumbles reflexively because we haven’t eaten in a day and a half because we have no appetite or desire to eat. When someone notices the sound, we force ourselves to smile and make an offhanded comment about it being a busy day, too busy to find time to eat yet. We reassure them we’ll eat plenty to make up for it later, even if we have no intention of following through.

We spend three days mostly curled up in bed, barely able to function. When someone checks in to see whether we’re okay, we run our fingers through our disheveled hair, force a smile and mutter something about just getting over a cold or the flu because somewhere in our mind we rationalize that a fake physical ailment sounds more believable and justifiable than a real mental one.

Someone remarks on the fact that we were wearing the same outfit when they saw us last a few days ago. We force a smile and reply that it’s our favorite or most comfortable one and joke about it being laundry day.

We force smiles and ask people who stop by for a visit to please excuse the clutter and the mess as if we have just been too busy to clean instead of being honest that we just haven’t had the physical or mental energy to do much of anything around the house in days.

We know when things are bad. We can see when our functionality begins to slip. Yet, instead of being honest with those around us, more often than not we minimize our struggles or even outright lie about their existence.

We isolate and make excuses about being busy with life. We avoid friends and family so they don’t see how bad things truly are. Again and again, we make excuses and downplay the severity of our condition as if we’re doing other people, or ourselves, an enormous favor by shielding them from the truth.

Many times every day, in virtually every interaction we have with others, we minimize our illness and the effect it has on our life supposedly for the comfort of others. We have so many excuses for doing this. We don’t want to put our drama on anyone else. We don’t want others to worry. We don’t want to be a burden. We don’t want to be accused of being an attention-seeker or throwing a pity party. We don’t have the words to adequately explain what is going on inside us or just plain don’t want to talk about it. We’re embarrassed of our diagnosis and don’t want to be judged or treated like a joke. Whatever our reasoning, we press our lips into a pained smile, pretending things aren’t all that bad and we lie.

We press our lips together in fake, forced smiles. We say we’re okay even when we know without a doubt that we’re not. We claim that we’re hanging in there, doing our best to stay positive and keep going, acting as if there’s nothing to worry about even as our world feels like it is crumbling around us.

What good does lying or minimizing our struggles really do?

Time and again, we wish others understood exactly what we are going through. In rare moments of unfettered honesty, we tell others they could not possibly understand how bad it is unless they experienced it for themselves.

But how is anyone supposed to ever understand or empathize if we keep hiding the harsh reality of the situation from them? We cannot simultaneously spare them the agony of the truth and accuse them of just not understanding how bad things really are. If we want others to understand how bad things truly are, we have to be completely  honest about it. Not partial truths, not sugary sweet versions of the truth but the whole unadulterated, ugly truth.

Because in reality, their comfort is not our responsibility. Our responsibility is our own well-being. We are doing ourselves no favors by hiding how we are doing from those who care about us. Likewise, we are doing them an injustice by hiding the truth from them. If someone is checking in about our well-being, they obviously care. If they care and are trying to be there, they deserve the truth. Not some watered down version of it but the whole truth and nothing but the truth.

Will our honesty make others uncomfortable? Most likely. But let’s be honest here. Mental illness is not pretty. It is dark and scary. It torments us to our very soul. Being honest about the effects of our diagnosis is not going to be pretty. But it is real. And reality can sometimes be very disconcerting. It can be a hard pill to swallow. But the truth is the truth and, as the saying goes, the truth can set you free.

Time and again, we complain about the stigma surrounding mental illness and how so many people do not take our diagnosis seriously. Perhaps we hold part of the blame ourselves. If we want others to truly understand what it is like living with mental illness, we need to start being completely honest about it.

I know it can be scary putting everything out there. There’s a great deal of vulnerability in sharing the whole, unfettered truth of the situation with others. But unless you’re completely honest about how you truly are, you cannot ever expect anyone else to understand exactly what you are going through.

mightylogoRepublished on The Mighty on 6/25/18.

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Republished on Yahoo Lifestyle on 6/25/18.

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If Only They Understood…

I recently touched base with someone from my distant past. To say it did not go well would be a colossal understatement. While I will not go into specifics about the conversation as a whole, one comment they made has been eating at me. So much so that I found myself at a loss for how to respond.

They told me they had been made aware of my writing but had not read it because they don’t believe in finger pointing.

When I began writing, it was for survival. I had so much baggage I carried with me that it was eating me alive. I was haunted by my past and desperately needed to talk about it before it killed me.

It had nothing to do with pointing fingers or hoping anyone received their comeuppance. The past was the past and nothing I could say or do would ever change it. But I could no longer pretend it didn’t happen, either. I needed to stop running and face my demons.

Even after I shared all I had been through, I continued to write. My second book was entirely about examining my perceptions of people and events, to reevaluate them not through the eyes of an injured child but rather as a rational adult. Again, it had nothing to do with finger pointing. I needed to reevaluate unhealthy and dysfunctional thought processes and patterns in my life if I was to ever have any hope of change.

I can understand their wariness. They knew my mother and witnessed her persecution complex firsthand. My mother, while suffering from often untreated, always undertreated, mental illness, often displayed what those close to her frequently referred to as the “Poor Patty” complex, believing the world was against her.

But I am not my mother.

I am not looking for anyone’s pity. I often tell people not to feel sorry for me. Feel bad for those people who lost their battles. I’m still here. Don’t pity me. Cheer me on. I’m a survivor.

I’m a realist in many ways. I’m not going to minimize what living with mental illness is like, especially not for the comfort of others. It is not pretty by any means. It is dark, ugly, disturbing and scary. Pretending it is less than it is only perpetuates the stigma and reinforces the belief that it should not be taken seriously. The only way we can ever hope to get others to truly understand how debilitating mental illness can be is by talking openly, honestly and frequently about it with no filter, no holds barred.

Part of being a realist, too, is accepting my diagnosis. A large part of my condition is caused by a genetic mutation. I was born with it. I can no more wish away my mental illness than a diabetic could wish away their illness. There are medications I will have to rely on for the rest of my life. I am also fully aware of my limitations currently. Whether those limitations might change in the future with treatment is yet to be seen but lying about or exaggerating my capabilities is only detrimental to myself and my well-being. I will not do it anymore.

That being said, I am also an optimist. I refuse to believe there is no hope. I refuse to accept the stigma surrounding mental illness. While I accept my diagnosis, I refuse to let it define me. I am constantly looking for new tools for my wellness toolbox and am devoted to deciphering and changing dysfunctional thought patterns and behaviors. I may have a mental illness but I still strive to be the healthiest that I can be.

I consider my writing to be both truthful about mental illness yet still uplifting and motivational. I encourage others to not give up, to stay strong and to fight for change. I want others suffering to know that they are not alone and that there is hope. After all, they are survivors, too. They are stronger than they realize. They don’t need pity, either. They need empathy and compassion.

I wish this person could see how wrong they are about my writing and my motivations. I wish they would take the time to read through my work and see that it was never about finger pointing. It was about healing, survival and personal growth, transitioning into advocating for others to stay positive and keep fighting, as well.

But unfortunately though you can lead a horse to water, you cannot make them read.

I hope in time we can talk more and move beyond their misconceptions of my writing and the intentions behind my words. I hate the distance I have allowed to grow between us and hope, in time, things may change. I hope, as well, that they will eventually come to see my writing not as something negative but rather as a sign of strength and a tool for survival.

Because as much as I truly miss having them in my life, I remain thoroughly unapologetic about my writing. Finding my voice has saved my life in more ways than one. Helping others has given me a purpose greater than I ever imagined for myself. Whether they can see it or not, my writing is one of the best things to happen in my life.

A Trip to the E.R.: Physical Vs. Mental Ailments

This last week has been yet another stark reminder of how differently people view and react to mental illnesses versus physical ones, especially in medical settings like the emergency room.

Please bear in mind that I am by no means a frequent flyer in the emergency room. The last time I was in the E.R. was about two years ago when I had a large cyst and tissue growth on my left ovary that had twisted and contorted it, causing severe pain. I was in no way crying wolf or looking for attention. My E.R. visit resulted in a surgical referral and the removal of that ovary.

My mother was a hypochondriac. She had doctors for everything and scheduled appointments with specialists on the drop of a dime. Somewhere along the way in my journey to not become her, I became the polar opposite in that aspect. I avoided doctors and only sought medical treatment as a last resort. I once tried to walk off appendicitis for a few hours as bad stomach cramps. On some level, I know it is irrational and that I need to make my health a bigger priority, but I still struggle to go to the doctor unless it is absolutely necessary.

Last week, I had a bit of a scare. I had gotten upset after a spat with my partner and had gone for a walk to calm down and clear my head. Somewhere along the way, though, my head began to hurt and spin. I knew I was upset but the details felt distant and fuzzy, as if the facts were lost in my head somewhere yet I was unable to access them. The harder I tried to root out facts, the more my head spun and the more confused I felt.

While I do struggle often with losing numbers, words or specific facts as a result of my mental illness and have also had memory issues following anxiety attacks and PTSD flashbacks as well, I have never experienced anything like this before. When I realized I could not even recall my own name, it sent me into a panic. I knew something was seriously wrong so went into the first business I saw and asked the clerk to call 911 for help.

An ambulance arrived to take me to the hospital. Their initial fear was a stroke. They started running multiple tests and sent me for a CT scan. As tests began to come back ruling out the prognosis of a stroke, the demeanor of the staff treating me began to change drastically.

Their next possible prognosis was that it was purely a mental issue or that I was lying about the severity of my condition, putting on some sort of act for attention. Despite the fact that I was visibly agitated and distressed at being unable to recall even basic facts, their demeanor changed. All of a sudden, they became outright accusatory and began to question whether I was telling the truth. One nurse went so far as to tell me point blank that they would have to start doing uncomfortable and painful tests, including taking my temperature rectally, putting in a catheter for a clean urine sample (though I had given them one in a cup not twenty minutes prior) or even putting a needle in my back to withdraw fluids for tests “unless I had something I wanted to confess”.

As I laid there in a state of panic not because of the possible upcoming uncomfortable tests but rather because my brain just was not working like it should, I could hear that nurse at the desk nearby laughing with her coworkers about how she was “going to get a rectal thermometer and make me talk”, the results of my CT scan came back.

It turns out that I have two meningioma on my brain, tumors between the surface of my brain and the inside of my skull. The larger of the two is in the falx region, in the front of my head, which deals with memory. The smaller of the two is in the middle, presiding predominantly over balance.

Neither was particularly large thankfully, but when housed in the small space between my brain and skull, even smaller tumors could cause issues. Apparently in my already agitated state following the spat with my partner earlier, there must have been just enough pressure put on the memory portion of my brain to cause a temporary memory loss.

The whole demeanor of the staff treating me shifted once again, becoming very serious and somber. They gave me some sedatives and anti-anxiety medication to calm me and slowly the fog began to clear. They began bringing in paperwork and test results for me to bring to my primary doctor to get a referral for a neurologist, stressing the urgency of the situation. Though they informed me that something like eighty percent of meningiomas are benign, even benign tumors continue to grow and could cause temporary or even lasting damage to my brain if left untreated. Ultimately, I’ll need surgery regardless of whether biopsy results conclude the tumors are benign or malignant.

The whole situation made me nauseous, even beyond the fact that I have tumors on my brain. Just the fact that I was only taken seriously when they feared for a physical condition like a stroke or when the tumors were found on my brain was appalling. As I had mentioned earlier, I have had memory issues related to my mental illness in the past, though thankfully never quite to this extent before. However, following PTSD flashbacks or severe anxiety attacks, my brain is always fuzzy and muddled, as well, and I often have periods of impaired memory afterwards. The fact that professionally trained medical staff at an emergency room would treat any condition they believed had a mental origin less seriously, let alone as a joke, is beyond disgusting to me.

I did not make a scene or call them out on their obviously shifting behavior, in part because the very idea that I had tumors growing on my brain left me in a state of shock. Even more so, like many others struggling with mental illness, I have sadly become accustomed to my mental health not being taken seriously. However, it is deeply disconcerting to me that emergency personnel at a hospital would be so openly cavalier about anyone’s mental health, treating their patients as a joke.

I walked away from this situation with a few distinct feelings and thoughts in my head. First and foremost, I have a newfound anxiety and wariness about going anywhere alone until this is resolved, particularly when upset. I was lucky that I was in an area with easy access to other people and was blessed to have maintained enough reason to know to ask for help. But I carry with me now an ever-present fear that next time I might not be as lucky, especially considering that I regularly operate under conditions of extreme anxiety and depression due to my mental illness.

I also am distinctly aware of all the unknowns in my foreseeable future. I am not sure exactly where I go from here. I understand the basics. Get a neurology referral, get an MRI, get a  biopsy, have surgery, possibly radiation if needed. But I have no idea of the time frames of anything just yet and probably won’t until tests and biopsies start coming back. I don’t deal well with the unknown. Not being able to plan to any degree heightens my anxiety to dangerous levels.

There is a strange sense of underlying optimism, as well. Somehow I know I will get through this, that I’m a tough cookie. I come from strong stock. Both my parents survived multiple types of cancer and other ailments before they passed. My time is not up yet. I have too much left to do. I have a lot of fight left in me.

However, I am very aware of the fear growing inside me, too. Cancer scares me to the core. I remember going to the hospital day after day when my mother had part of her lung removed due to lung cancer, watching her fade in and out in the CCU, not sure whether she would make it or not. I remember reconnecting with my father just in time to watch cancer wreak havoc on his body, going through repeated cycles of surgeries and chemotherapy. His cancer always seemed to be one step ahead, reappearing again and again in different areas until it eventually killed him. I’ve seen cancer eat away at and kill multiple friends over the years, as well. Cancer is, by far, my biggest fear and it is now on my doorstep.

More than anything, though, I came away from this with a harsh reminder of the stigma that still surrounds mental illness, even in medical facilities. When they believed my issue was a mental one, I was a joke they saw fit to threaten with unneeded, uncomfortable and painful tests as a way to get me to “come around”, expecting my condition to magically cure itself and disappear under threats of unpleasantness. It took finding tumors on my brain, something they could physically see, for my condition to finally be taken seriously.

mightylogoRepublished on The Mighty on 6/17/18.

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Republished on Yahoo Lifestyle on 6/17/18.

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Republished on Yahoo Finance on 6/17/18.

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Republished on Yahoo Sports on 6/17/18.

Something To Think About Before You Consider Killing Yourself..

There are many quotes that resonate strongly with me on a very personal level.  One of my favorites is by William Goldman:

“Life isn’t fair.  It’s just fairer than death, that’s all.”

What makes life more fair?  I believe it is the fact that you still have possibilities and options.  No matter how bleak and hopeless today might feel, there’s no way to know what tomorrow or next week, next month, next year might bring.  Life is fairer than death because death takes away all your options, all your possibilities.

I won’t ever throw out empty promises that tomorrow will be better if you just hang in there because none of us knows exactly what tomorrow may bring and whether it will be good or bad.  But one thing I can guarantee you is that it will bring possibilities.  The possibility of action and of change.  The possibility of a future beyond today.

I would be lying if I said I hadn’t been there myself, if I hadn’t tried myself in the past.  I understand how it feels to feel lost and all alone in the world, to believe that you have no more options.  I know exactly how scary it is up on that ledge.  I know all too well that siren’s call, promising an end to the pain if you just give up, just give in.

Unfortunately, that’s all suicide gives you.  An end.  It doesn’t remove any of the problems that existed.  It just robs you of the ability to do anything to fix them.  And it’s final.  There are no do overs, no second chances, no tomorrows.  It is emptiness.  Nothingness.

Yes there would be no more sadness, heartache or pain.  But there’s no more happiness, either.  You’re robbing yourself of the chance to heal, to overcome, to see better days again.  You’re allowing the worst days in your life to steal the possibility of all future happiness from you.  You’re depriving yourself of a future that is completely within your power to transform into anything you wish.

Giving up means giving up your future and giving up the chance to make your life better.  It is final.  When you give up, there are no more possibilities.

There are also no more hugs.  No more drippy ice cream cones or licks from cute, fuzzy puppies.  No more bad puns that make you chuckle and no more all you can eat taco bars.  No more sunny days or breezes blowing through your hair.  No more singing songs loudly and off key and no more cups of cocoa with too many marshmallows.  There are no more bonfires or camping trips.  No more joyrides with friends or late night pizza runs.  There’s no more movie marathons or teaching your children to ride a bike.

There’s no second chances to fix things and no way to say you’re sorry or make amends.  There’s no new friends or new jobs.  No new children or new pets.  There’s no new hope and no second wind.

There’s nothing.

I could go on and on, listing all the things you could be giving up, but the possibilities are endless.  By choosing to live, you have millions of doors available to open, millions of lives you could live.

There’s only one thing you get from suicide.  Nothing.

I won’t guilt you by saying you should keep living so you don’t hurt others because I believe you should be living for yourself, not someone else.  Don’t get me wrong – it would devastate everyone in your life and change who they are forever but it isn’t fair to ask you to live your life for someone else.  You ultimately need to choose to live for yourself.

But please know that I have been right where you are now.  I was sixteen the first time I tried to kill myself.  I can tell you without a doubt that I am grateful I did not succeed.  I won’t lie to you and tell you that my life has been a bowl of cherries since then, but I still have been blessed beyond anything I ever imagined for myself.

I have wonderful children I would not trade for the world.  I have reconnected with my first childhood crush and found a lasting love.  I am a published author of a handful of books and with blogs that have been republished and shared world-wide.  My life has not been perfect by any means, but it’s a hell of a lot better than the alternative which is nothing.

I know others who have survived suicide attempts, as well.  Years later, we’ve talked about all that has happened since their attempts.  Children.  Marriages.  Careers.  Vacations.  Celebrations.  Memories.  Life.

I have never heard a single one of them say they wish they had been successful.  No matter how many highs and lows they have gone through since then, every single one has been glad they are still here.  I’ve heard stories on television, as well, from people who have survived suicide attempts like jumping off bridges.  They all share the same narrative about regretting that one moment of weakness and being grateful that they did not succeed.

Because you know what they would have had if they had been successful?

Nothing.

“Life isn’t fair.  It’s just fairer than death, that’s all.”

Life is fairer than death because life is full of possibilities.  Death takes every last possibility away.

Don’t keep living for anyone else.  Choose to live for yourself because living means that you still have a chance to be happy, a chance to make amends, a chance to find love, a chance to be a parent or to pursue your dream job.  Keep living because by living, you still have a chance.  With death, you have nothing.

Explaining My Aphantasia

I frequently write about mental health topics, particularly ones that directly affect me because I firmly believe it is easier to explain conditions when you write what you have experienced firsthand.  Though more often than not, I write primarily about mental illness, there are mental health-related conditions that exist outside what would be considered an illness or disability.  One such mental condition, one that I live with personally, is aphantasia.

Growing up, I honestly did not realize that my mind worked any differently from anyone else’s.  When I’d sit in a classroom with my fellow classmates and the teacher would tell us to imagine something in particular, my mind would race through a database of sorts, pulling out words to describe whatever we were instructed to visualize.  I did not know back then that my mind was different.  I had assumed that was how everyone’s brains worked because nobody had ever told me any differently.

I was in my early twenties when I first discovered just how differently my mind worked.  I was a young mother back then, watching random children’s programming with my toddler.  On one random educational children’s show, I honestly do not remember which, one of the characters suggested all the kids close their eyes and imagine something or another, walking children through some exercise in imagination.  They ended by asking the children watching if they could see it and what colors had they chosen for their creations.

I remember sitting there completely dumbfounded, one of those “wait.. what?!” moments.  The whole concept that anyone could create images within their head, actually see pictures, blew my mind.

When I close my eyes, all I see is blackness.

When I try to pull up a recollection of something, all I ever get is a long series of words, of descriptors.  The best way I can describe it is that my mind is like a vast room of file cabinets, all containing various data.  Whenever I start thinking of something, my mind races, looking for facts to connect to the recollection in question.

If someone tells me to close my eyes and imagine an apple, I never am able to see an apple in my mind.  Instead, an inner dialogue starts, spewing out everything I know regarding apples.  Apples can be red or green or yellow.  They can be solid colored or speckled or mildly striped or splotchy in appearance.  There are crab apples as small as a cherry and honey crisps as large as a grapefruit, but most apples are around the size of a fist.  They are somewhat round but not completely.  They have little bumps on the bottoms, similar to the base of a pepper.  They are usually sweet but some, like granny smiths, can be tart.  The best time for apple picking is the fall. Apples can be used in recipes for…

My mind races on and on, yanking out every fact it can find that has anything to do with an apple.  There’s times it’s almost like a data overload because so many facts will surface at once.  After all, I KNOW what an apple is.  I’ve had many apples over the years.  But at no point can I conjure up even a simple picture of one.

When my brain first made that connection that other people could see things in their minds, I couldn’t help but feel like THAT was the abnormality because the very idea felt so foreign and alien to me. For months, I questioned friends with seemingly stupid questions. “If someone tells you to close your eyes and imagine an apple, can you actually see one?  Like not just KNOW what an apple is but clearly see one IN YOUR HEAD as if it was sitting right there in front of you?”

Again and again, the answer came back as a resounding yes, of course they could.  Everyone I knew seemed to be able to conjure up images in their brains like their own personal movie screen.  Everyone, that is, but me.  It was like that one game we all played as children where one of these things was not like the others and it turned out I was the odd man out, the one that was different.

Over the years, I’ve periodically looked for others who might be experiencing something similar.  As my children grew older, I even questioned them to see whether they had the ability to visualize.  I do not know whether the condition CAN be hereditary or not, but none of my three children share this trait with me.  They can all visualize just fine.

It wasn’t until recently that I even stumbled across the term aphantasia.  For decades, I just referred to it as an inability to visualize, doing my best to explain that all my brain could ever muster up was a series of words to describe and connect things but never a single picture.  From time to time, I would randomly still ask others if they could visualize in their mind’s eye, hoping to find someone else who might be like me, but I never had any such luck.  That is, until around two years ago when I stumbled completely by accident onto a research study being done in the UK for Aphantasia.

I was beyond excited.  I was elated.  I was no longer some random ugly duckling, alone and unique in all the world.  My brain wasn’t broken, flawed, some freak abomination that existed outside the realm of everyone else.  It turned out this was an actual medical condition that affected as many as one in fifty people to varying degrees.

I found myself reaching out to the scientist that was heading the research study into aphantasia, explaining that it affected me, too.  I was sent a series of questionnaires to fill out for him to add to his research data.  We emailed back and forth a few times over the next few weeks.  It was wonderful just knowing that I wasn’t broken or crazy after all.  When I found out about my mthfr genetic mutation a short while later, I contacted him about that, as well.  I do not know whether it is in any way related, but I wanted his data on my case to be as complete as possible.

Aphantasia is not a disability.  It is more of a nuisance.  Where other people can immediately conjure up images from thoughts, my brain is left to sort through piles of data, an inner dialogue of words, for what is relevant to every situation at hand.  I often joke about how, though most people put in their two cents, I stop closer to a quarter, but in actuality that is just how my mind has always worked.  I have frequent data overloads in my head and tend to ramble on subjects until I get it all out.

I’ve been complimented numerous times on my writing, how people love the comparisons I draw and the flowery words I use to describe everything.  It is not anything I have ever done intentionally.  My mind is just chock full of words because it is void of imagery.

Over the years, I have felt the impact of my aphantasia in many ways that other people take for granted.  For instance, I am absolutely horrible with facial recognition.  I might look at someone that I have seen dozens of times and have trouble putting a name to the face because they have changed something as simple as their hair color, gotten a hair cut or put on some weight.  I know that I know them, that there’s something about them that is familiar, but until I dig through the databases in my mind looking for other connections beyond physical traits like their eye color, nose shape or height, I’m often at a loss.  I wait for someone else to mention a name or a location or occasion connected to them, something to make that connection click.

I have no memories of my past, at least not in the way that others experience them.  Others can close their eyes and be transported back to a sunny beach they visited years ago, reliving the beauty of the moment.  For me, all I have is a stream of facts.  I can tell you the approximate dates I was there, can tell you how blue the water was, comparing it to other recollections I have to similar shades of blue.  I can tell you how warm the air felt by comparing it to other types of warmth, but I can never relive that day.  My mind catalogues data.  It does not retain memories.

Perhaps the worst affect that I feel from aphantasia is the weight on my heart.  When my children leave to go to their dad’s house or to go back to their dorm, I cannot close my eyes and picture them here again with me.  I can look at a photo of them but that is the only image I’ll have until I see them again.  I am very partial to photographs and videos because it gives me actual glimpses back in time, something my own mind cannot do.

I lost both my parents in 2010.  I don’t possess any pictures of either of them so their faces are lost to me forever.  I can list off basic facts like the crows feet that spiderwebbed beneath his eyes or the fact that my mother used to furrow her brow when she was upset or deep in thought but I can never close my eyes and picture their faces ever again, can never see the way the corners of my dad’s mouth would turn up into a smirk when he was about to tell a punchline of a joke or see the way my mother’s nose would crinkle when she would sample a taste of something she was cooking.  I know those things happened because the words are locked away in my brain’s database, but the actual images of those moments have been lost forever to me.

Over the years, I’ve come to realize just how often everyone else relies on visualization and it makes my condition feel even more glaring.  Last year, for instance, I began taking meditation classes hoping to add to my mental wellness toolbox.  I sat in a group with several others talking about breathing exercises and conscious breathing.  Then it came time to begin our first actual group meditation.  We were all told to close our eyes, uncross our legs, loosen our muscles, to place our feet squarely on the floor and rest our hands flat on our thighs.  We were guided to pay attention to our breathing, the slow in and the out, to feel the air around us and to be in the moment, fully aware of ourselves and our bodies.  So far, so good.  Then the instructor told everyone to imagine a small ball of light glowing inside themselves, in their core, to see its brightness, feel its warmth, to imagine it growing inside us, filling us, to see the light expanding beyond ourselves, encircling us, filling the room, expanding outwards, continuing to grow.

And THAT was completely where she lost me.  When I closed my eyes, all I could see was black.  There was no glowing orb and there never would be.  I had words within my head to compare to lights with a soft glow or of lights expanding similar to the approach of dawn, but no matter how hard I might try, I could never visualize that ball of light, or roots connecting my feet to the earth to center me or any of the other visualizations commonly used in meditation.  Meditation techniques commonly used by everyone else are completely lost on me because they rely heavily on visualization.  For me, meditation has become about situational awareness, of feeling my breath flowing in and out, of feeling my heart beating and feeling the sensation of the air on my skin.  I cannot imagine and visualize anything flowing and growing around myself so instead I use meditation to pull myself into the here and now, to concentrate on my body in the present and to try to silence my mind.

In the last year, I have realized my aphantasia goes beyond an inability to visualize.  In another “mind blown” moment, I had someone ask me whether I could mentally recall other senses, such as the way things tasted, smelled or felt.  I realized all recollections of those senses were just words, as well.  I could tell you that I remember the sweetness of a cupcake or how well water smelled similar to hard-boiled eggs or how a fleece blanket felt soft and furry like a baby animal.  But they are all words.  I cannot taste that cupcake again nor smell that egg smell nor feel the sensation of that soft fleece again on my fingertips.  I have the words to describe them all because I have experienced them all before but I cannot relive any of those moments again.

Perhaps the only sensation I am able to recall to any extent is pain and that is very limited.  I suffer from PTSD due to physical and sexual abuse over the years.  There are times when I have flashbacks, reliving those moments of abuse all over again, where I swear I can feel the blows again.  I am not sure if it is a matter of muscle memory tied to the PTSD itself or if it is a genuine recollection of some sort.  All I know is that it only occurs during flashbacks and it is only physical pain that my body can recall.  Unfortunately, following PTSD flashbacks, I am physically, mentally and emotionally exhausted so I have never been able to delve into those recollections more.

These days, I often describe my aphantasia as a type of blindness in my mind’s eye.  I think back to watching The Miracle Worker, the story about Anne Sullivan teaching a young, blind and deaf Helen Keller how to communicate.  Helen Keller couldn’t see the water because she was blind.  Again and again, Annie Sullivan signed the word for water into her hand until her mind made that connection.  She could not see the water, would never see the water, but her mind was able to make that connection.  That word meant water.  That is how aphantasia works within my head.  I close my eyes and my mind’s eye is blind.  My mind cannot see the water, cannot see an apple, it will never see anything.  But it makes those connections of words to items.  I might not be able to ever visualize an apple, but my mind possesses the words to know what an apple is.

Aphantasia is a condition where the brain is unable to form images or visualize.  It is a condition that often leaves its sufferers feeling broken and alone, as if their very brain is flawed and doesn’t work like everyone else’s.  Current studies show that it affects approximately one in fifty people.  It is not considered a disability or an illness but rather more of a hindrance or nuisance because it affects a person’s overall quality of life.  Unfortunately, though, there is very little research currently available on the subject to explain what causes it nor is there any cure.  It is just something that I, and many others like me, have learned to live with over the years.  Whenever we close our eyes, our world fades to black.

mightylogoRepublished on The Mighty on 6/11/18.

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Republished on Yahoo Lifestyle on 6/11/18.

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Republished on Yahoo News – India on 6/11/18.

Republished on Yahoo News – Singapore on 6/11/18.

Republished on Yahoo News – Canada on 6/11/18.

Why I Write Part II: Looking Back Over Two Years of Mental Health Writing & Advocacy

A couple years ago, right around my birthday, I began to write.  My life had begun unraveling yet again and I clung to my words as someone drowning might cling to debris floating downstream, hoping something, anything, might keep me afloat and stop me from going under.

It began with a book about my own experiences.  Sink or swim, live or die, I didn’t want the truth of my story going down with me.  But a miraculous thing happened as I threw my words out into the wind – I was finally heard.  For the first time in my life, I was heard.  Even more miraculously, words floated back to me, telling me that others understood, others had been there, that I was not alone.

And it saved my life.

Knowing that I wasn’t broken, wasn’t crazy, wasn’t alone in all the world gave me renewed strength to fight, to keep going, to not give up.  In that moment I was forever changed.

I suppose some could have dusted themselves off, walked away, and continued on with their lives, grateful for another chance at life.  But I couldn’t.  I had a lifetime of silence to make amends for, over forty years of pain to release.  Once I got to the shore, I added my voice to the collective.

For years, I had drifted along seemingly alone, being pulled under, almost drowning, again and again.  Those voices that reached out to me from the shore, other survivors who encouraged me to just keep swimming, showed me I was never as alone as I had believed.  If there were others on the shore, there had to be others in the water, as well.  Others who needed to know they were not alone, either.  Others who needed encouragement and empathy to keep fighting and not give up.

I had this overwhelming urgency to pay it forward.

I began writing more often, sharing the gritty truth of what it was like to live with mental illness.  I also began speaking out more and more about fighting stigma and discrimination.  I was like Ebenezer Scrooge, awoken on Christmas morning to see the world in a whole new light.  It was not too late for me.  My story wasn’t over.  I could still make a difference in the world.

How have I endured in regards to my newfound passion?

Though personally, I’d consider my venture into writing over the past two years a huge success, I know many would consider it middling at best.  I have a handful of books about mental illness and mental health published and others in the works.  I have an active blog, averaging 2-4 new pieces a month.  Many of my blogs have been republished elsewhere, most notably The Mighty who has republished well over 35 to date with others sitting in a queue, earmarked and waiting to go live.  I have been on my local NBC news station for an interview about my book.  My pieces have been discussed by television and radio stations as far away as Australia and have been shared by advocacy groups, private practices, schools and government agencies in one hundred different countries around the world – that I know of, at least, according to the stats page on my personal blog.  I have a milestones page filled with events in my short writing career I would have never dreamed possible a few years ago.

The majority of the people who have read my writing have read blogs that have been published and republished for free.  I do sell a book or two here and there, as well as an occasional anxiety chart poster, but it is nowhere near enough to make a living from or to pay any of my bills.  As much as I would love to make a living at this, doing what I have come to love, I am not sure whether it will ever be in the cards for me.  Why, then, do I keep writing?

I write to make a difference.  My voice might not travel far – mental illness is a very niche topic that is unlikely to ever truly go viral – but I have seen firsthand that my writing is reaching others.  I see it in the messages sent to my inbox, thanking me for putting their own struggles into words.  I see it whenever someone else tags someone they know on one of my pieces, trying to help them better understand.  I see it every time any group, organization or agency who works with the mentally ill shares my writing.

Admittedly, even two years later, it all still feels surreal and makes my eyes water.  I still feel honored and humbled every time anyone reads my words and relates, reads my words and shares them with others.  I truly feel blessed.  It has in many ways become my calling.

But still, in a day and age ruled by the almighty dollar, why continue devoting so much time and energy to something that can’t even pay the bills?

The answer is simple – I write because I know I can make a difference.

I don’t ever imagine I will be world famous and renowned.  I am honestly beyond amazed that my writing has reached as many people as it has. I know I won’t be able to save everyone, to make a difference in everyone’s life, but I am making a difference in some people’s and that is enough for me.

I am reminded of a bittersweet story about a young child walking along the ocean shore after a big storm.  It comes from a book called The Star Thrower by Loren C. Eiseley.  This young child walked along the beach, one by one throwing starfish that had washed ashore back into the ocean.  After some time, an old man approached the young girl, asking her why she was wasting her time, telling her there was no way she could ever save all the starfish that had been washed ashore.  At first, the young girl was discouraged but that feeling only lasted a moment.  Then she picked up another starfish at her feet, returned it to the ocean and proudly proclaimed that at least she made a difference to that one.

I relate so very strongly to that little girl.  I cannot save everyone.  I know that.  But I am determined to keep writing, keep making a difference, continue to help others as much as I can.  Even if my words only touch one life here or there, I have made a difference in the world.  I have left an impact and made the world a better place than it was before.  And that is enough for me.

Anxiety & Jumping to Conclusions

When someone suffers from an anxiety disorder, our minds are always in overdrive, racing at top speeds trying to figure everything out. For each and every problem that presents itself, our brains reason out hundreds of possible reasons why, usually settling on the worst possible scenario or the one that bears the most personal responsibility. We see ourselves as broken and flawed so we naturally assume the fault ultimately must always rest with us.
When a friend does not acknowledge our messages or respond back right away, our mind races to decipher what we must have done to upset them without realizing it. We ponder whether we’ve been such awful friends, caught up within our own misery and personal problems, that we must have devalued their friendship, damaging it irreparably, causing them to give up on us and walk away. Somehow, the worst possible probability always seems more likely to us than the sheer possibility that they might just be busy, distracted by their own lives at the moment.
When our boyfriends or girlfriends, husbands or wives do not respond to us with absolute elation or passion, we start to wonder whether they are falling out of love with us. We dwell over how much of a handful we have always been in the relationship, whether real or imaginary. We wonder whether they’ve stumbled onto someone else they mesh with better and we honestly could not blame them if it were to happen because we know how horrible we can be. No matter how much or how often they tell us they love us and they cannot imagine their lives without us, our anxiety leaves us with an overwhelming sense of insecurity that convinces us that anyone else in the world would be a better choice than we are for them.
If something goes wrong at school or at work, we automatically assume we must be to blame and seek out how we must be ultimately responsible. Even if we know for a fact we had nothing to do with a situation happening, we look for areas where our intervention may have prevented the mishap and blame ourselves for our inaction. We feel as if we’re damned if we do and damned if we don’t, but either way, we’re still to blame.
If something breaks or stops working, we trace back to our last time using it, considering every irresponsible action we have done that may have contributed to its demise. Somewhere in our heads, we rationalize that forgetting to shut off a machine when we were done using it once 6 months ago must have ultimately caused a chain reaction that led to its deterioration and destruction. It doesn’t matter if a dozen other people have each done a dozen different things since then to contribute to the situation at hand. In our minds, our mistakes are so glaringly horrendous that we cannot fathom any other explanation being more likely. It doesn’t matter if an item was past its prime or threadbare and past due to be replaced. Our anxiety tells us it would still be usable if not for us.
We internalize everything. We assume that the chaos within ourselves is constantly leaking out into the world around us, seeping into everything we come in contact with, making everything ultimately worse. Our minds race straight for the absolute worst possible scenario, making a pit stop at every other negative possibility along the way. Our anxiety tends to blind us to the positive possibilities or even to the simple likelihood of coincidences or happenstance. It discards any randomness, always looking for a definitive answer and cause. There must ALWAYS be a reason why, must ALWAYS be someone to blame, and our minds have designated us to be the sacrificial lamb.
We do not do this intentionally. It isn’t that we’re just being a Negative Nancy, refusing to listen to reason or see the positive side of things. When we blame ourselves, we are not having a pity party, expecting others to feel bad for us, too.  We genuinely feel responsible whenever anything goes wrong.  Part of having an anxiety disorder is having a brain that is constantly, consistently, working in overdrive, looking to connect and explain everything around us, whether those connections are real or imaginary. Even if those links seem ludicrous to others looking in, when our minds make those connections, they feel genuine to us. Our brains are often on autopilot, with us just along for the ride. Whenever the rational side of our mind tries to speak up, speak out, to even suggest we might be overreacting or making something out of nothing, that voice is drowned out by a hundred other voices, a thousand other possibilities, of ways and reasons that we might be, must be, wrong.
If we have ever had a friend in the past who have distanced themselves because they felt we were too much of a handful, part of us assume other friends will follow suit and discard us, as well. If we’ve ever had a partner fall out of love with us or cheat with someone else, part of us braces ourselves for the next time it will happen, leaving us abandoned and alone. Because of this, we have trouble letting people in, trouble trusting others and allowing ourselves to be vulnerable.  We are terrified of being hurt, of putting ourselves in that position again.  As much as part of us knows that our current friends and partners are not those people who hurt us in our past, our brains keep pushing to link everything together, to make connections even where none truly exist. Even worse, when we are faced with pain or abandonment from others, we still question ourselves, looking to take personal responsibility for the choices and actions of everyone else.
Perhaps even worse than the initial blame game we play with ourselves is the way our minds will keep building and compounding our theories upon themselves, escalating them to unfathomable proportions. We build these fragile houses of cards in our minds, adding new card after card until we’ve created a precarious tower of self-loathing and blame. We tear into ourselves with a never-ending monologue that continuously harps that if we had just tried harder, just been better, not been so broken, been more responsible, none of would have happened. Our minds taunt us, telling us we should have known better than to even try, reminding us that everything we do, everything else we try, will fail, too, in time. We tell ourselves the lie that we are destined to be alone, that sooner or later everyone always leaves, then push everyone away, creating a self-fulfilling prophecy.  We allow our anxiety to convince us that failure and loneliness is an inevitable part of our lives and that we don’t deserve any better. We sincerely believe that it’s just what we do, just how our lives go, that you cannot fight the inevitable.
Even if it eventually comes to light that we were not to blame, even if the situation had a simple explanation that has nothing to do with us, it does not quell our anxiety. Instead, we tell ourselves, “it might not have been us THIS TIME..” as we begin to mentally brace ourselves for the next time we actually will be at fault. We chalk it up to sheer luck and we don’t see ourselves as ever truly lucky so we consider it a rare free pass, unlikely to ever happen again.
I often catch myself travelling down that anxiety-ridden path, needlessly panicking before I even know all the facts. I find myself looking to rest all the blame on myself even before I fully understand the situation or its underlying cause. I often find myself taking any distance from family and friends personally, without considering that their lives are busy, too and that life happens to us all.  I feel like I have to be ever-vigilant, ever self-aware, so I have even the slightest chance to rationalize with myself before the inevitable self-blame-game begins. Even then, it is a struggle within myself because my body automatically reacts to the anxiety festering in my mind. Even if the logical part of my brain is able to determine I am not at fault, there’s always that kernel of doubt bouncing around in my head, asking “..but how do you know for sure?”
Years ago, I had a friend that used to jokingly tell me, “Beth.. get off the cross. We need the wood”. It’s a sentiment I’ve come to relate heavily to my own anxiety. After all, I have been needlessly carrying the burden, real or imaginary, of everything going on around me for my entire life. I am slowly learning to differentiate between the rational and irrational, taking ownership of my own actions and decisions without carrying the weight of the rest of the world on my shoulders. While I cannot will away my anxiety disorder with mind over matter, being able to catch myself and separate what is probable from what is unlikely is a good start.  I may have to live with this anxiety monster on my back, but I don’t need to keep feeding it.

mightylogoRepublished on The Mighty on 6/22/18.

The Double Standard of Mental Health Support

Ever since Dwayne “The Rock” Johnson spoke up about his own struggles with depression, the story has been everywhere, appearing again and again on all my social media feeds.  Everyone loves The Rock.  It’s a great story.  It’s all everyone wants to talk about.  And beneath his story, you see the same sentiments being shared again and again.

“The poor guy having to suffer through that..”

“Good for him to speak out..”

“How brave..”

It’s a story that we’ve seen dozens of times before.   Celebrities speaking out about mental illness is quickly becoming a huge movement as more and more share their story.

We applauded and cheered when Kristen Bell talked about her battle with depression and anxiety because it made her so much more real. She wasn’t that perfect, ever-smiling, ever-happy Hollywood darling with no problems.  She was one of us!

When Demi Lovato spoke out about her own struggles with depression, bipolar disorder and drug addiction, her fanbase surged.  People admired her for being brave enough to speak up about such difficult topics.

Since he spoke up about his depression and thoughts of suicide, Jared Padelecki is continuously swarmed at cons by fans who love him even more for his brutal honesty and his “Always Keep Fighting” campaign.  The whole Supernatural cast has begun speaking out about mental health and have never been more beloved.

We admire and idolize Carrie Fisher for speaking so frankly about bipolar disorder and called her a national treasure.

When Patton Oswalt talked about the depression he went through after losing his wife, our hearts all went out to him.  We grieved with him and felt his pain.  We all wanted to hug him and to find the right words to say to lessen his pain.

J. K. Rowling.  Lady Gaga.  Selena Gomez.  The list goes on and on.  Speaking out about their struggles with mental illness makes them more relatable, less larger-than-life.  Our hearts all go out immediately to them when they share their stories and confide with us about their pain.  We sympathize, we empathize, we want to reach out to tell them that we’re here to listen even though they don’t even know us.

Whenever we see an actor, musician or a professional athlete taking time off from making movies, touring or playing a game to seek treatment for mental illness, we all say to ourselves, “Good for them, getting the help they need.  It’s such a difficult thing to admit or to face.  I hope they get the help they need.”

Robin Williams.  Chris Cornell.  Chester Bennington.  Whenever we lose an iconic celebrity to suicide, the whole world mourns for months.  The mourning is renewed each year on the anniversary of their death, as well.  Crowds weep together and share stories about how their lives were impacted by their presence and how greatly their loss will be felt.  Newsfeeds are filled with scores of pictures sharing quotes and sweet sentiments along with prayers that their souls are finally at peace.

If you only looked at how society treated mental illness by how we respond to our celebrities, you’d assume we are the most compassionate, enlightened society to ever walk the earth.  It’s truly laughable.

Please know I am not minimizing or trivializing any of their battles with mental illness nor am I diminishing the tremendous losses the world has endured from celebrity suicides in recent years.  It is incredibly brave to fight for your mental health, perhaps even more so in the public eye.

I personally admire them all for taking a stand to fight against the stigma of mental illness.  Like many others, I’ve cried when I read their stories and so many others like them because I could relate.  I’ve mourned those needless deaths because I have walked that edge myself on more than one occasion so I understand all too well how it feels to be suicidal.

I say it is laughable not because I take mental illness lightly or because I am mocking their pain but because the way mental illness is regarded with celebrities is so far removed from the responses the rest of the world gets.  It truly sickens me that the overwhelming support they receive rarely extends to normal, average, everyday people with the exact same diagnosis.

When the average person opens up about their struggles with mental illness, we’re rarely met with any support and encouragement.  More often than not, we’re hit with judgment and persecution.  We’re treated as if we’re exaggerating or making something out of nothing.

“What do you even have to be depressed about?”

“Have you even tried to just be happy?  It’s not that hard.  You just have to be more positive.”

“You’re still not over that yet?  You need to just learn to let go of things that get to you.”

“Everybody has problems.  Stop being such a drama queen and learn to deal with them like everyone else does.”

We mention going to our doctor and getting on medication and are confronted with comments and memes about how we don’t need pills, we need things like sneakers and fresh air.

We talk about seeing a therapist and are told we shouldn’t be putting our private life out there to strangers who are only listening because they are paid to do so.

We’re told it’s all in our heads and that we should be grateful we don’t have “real problems”.

We’re told we’re just not trying hard enough, not doing enough.  Told we just need to try harder, do more, and we’ll get out of that funk.

Everyone has an answer for how to “get rid of our illness” but none of them have anything to do with the actual medical treatment needed for a medical diagnosis.  Be on your phone and computer less.  Go outside more.  Join more activities.  Start more hobbies.  Get a dog.  Get a girlfriend or boyfriend.  Make more friends.  Watch happier movies.  Read more positive books.  Listen to more upbeat music.  None of this would cure any other illness but that doesn’t matter.  Since others cannot see our illness, it must not be worthy of any real treatment.

We see those with mental illness painted as monsters or mocked as jokes.  We’re told that only the weak-minded can’t deal with their feelings.  We’re portrayed as unhinged, broken, unbalanced and unsafe, someone to avoid at all costs so that our crazy doesn’t rub off or spill out onto others as if we’re contagious.

We’re expected to suck it up, hold it in, don’t talk about anything that might make anyone else uncomfortable.  We’re supposed to pretend everything is okay, pretend we don’t feel anything at all even though we feel like we’re slowly dying inside.

When we reach out for help, we’re more often than not denied because it is an invisible illness that they cannot see.  We’re forced to fight, to prove there’s anything wrong and that it’s bad enough to justify getting help.

And Heaven forbid someone loses someone they love to mental illness.  They can’t even mourn without others commenting about how selfish suicide is, as if no longer being able to live in constant torment somehow makes them a bad person that deserves to be forgotten.  If an average person kills themselves, you’re not even supposed to acknowledge their life or their death because it might make others uncomfortable.

For the average person, mental illness is a bad word.  It’s that gorilla in the room that everyone knows is there but nobody is willing to talk about.  It’s that monster on our backs and in our souls that is eating us alive that we’re supposed to pretend isn’t there.

Mental illness doesn’t just happen to celebrities.  It does not discriminate.  It affects everyone around the world regardless of age, gender, sexual orientation and identity, religion, race, occupation, political party, or socio-economic status.

Mental illness isn’t some rare fabled unicorn that only lives in legends and fairy tales, some mysterious creature whose very existence is highly doubtful.  It is all around us.  Millions suffer from mental illness every year.  An average of one in five people struggle with it.  It is an epidemic of global proportions.  It is a very common health problem.  And average, everyday people deserve the same compassion, admiration and support as celebrities do for fighting the exact same battles.

I am an average person with an average illness that affects one in five people in this world.  I am fighting the same battle as millions of others fight to varying degrees every single day.  I’m tired of being treated like I am invisible just because my illness is.  Whenever a celebrity speaks out about their own battles with mental illness it reminds us that they are just ordinary people, too, with the same problems we all face.  If we support some “ordinary people” in their battles with mental illness, shouldn’t we support all?

 

We Should Not Be Afraid To Embrace Our Happiness

I have been struggling a lot this past year, mostly fighting bureaucracy and red tape.  Unfortunately, the more heavily the battle weighs down on me, the more it bleeds into and invades every aspect of my life, particularly my writing.  The more anxious I feel about the possibility of losing my battle, the more I find myself writing about how harshly anxiety affects my life. The more depressed I feel about the struggles I am having getting my disability case fixed and open, the more I write about the negative impact of depression.  That is because I write what I feel and unfortunately, when someone has struggled with mental illness their entire life as I have, my words often emulate the negativity and hopelessness felt inside.

But please know that DOES NOT mean I never experience any happiness or that I am not allowed to be happy because I have a mental illness.  Having depression doesn’t mean you’re forbidden from ever experiencing happiness.  Finding a reason to smile or to laugh when you can DOES NOT take away or in any way minimize your struggles or your diagnosis.

I honestly don’t know why so many people expect mental illness to be an absolute, all or nothing diagnosis.

Someone can have arthritis so horrible that they often stay home because it hurts too badly to move, yet still have days between flare ups where they might go for a walk around the block in the sunshine or plant a few flowers in their garden.  People applaud them for their strength for being able to still do things that they enjoy.

Someone can be fighting cancer and lie in bed for weeks, too exhausted to do anything in between their chemo treatments.  When they manage to pull themselves up to sit, talk and laugh with a friend while catching up over a cup of coffee, people cheer them on.  People applaud them for being able to set aside their pain and their struggles for even a few moments to enjoy the world again.

For any other visibly debilitating illness or health struggle, people receive overwhelming support and accolades for managing to embrace even a momentary slice of happiness in the midst of their battle.  They’re commended for their great strength just for still being able to smile.

Yet, for anyone struggling with mental illness, anything even remotely resembling even momentary happiness is met with accusations.  If someone smiles, laughs or talks about having a pleasant time or a good day, people swarm in to attack, assuming we must have been exaggerating or outright faking our illness because in that specific moment we “look just fine”.

They post rude comments on pictures we share where we’re smiling that we “don’t look very depressed to them”.  When we talk about enjoying a few hours out with family or friends, they throw out snide remarks about how they thought we “had too much anxiety to do anything” or that our “depression made it too hard to function” yet they saw us out and about, having fun.

Their barrage of comments often makes us feel even more trapped and isolated by our illness.  We are left feeling like we have to hide or make excuses for even momentary happiness, as if it is a forbidden luxury not extended to the mentally ill.  We worry about even having a more functional than normal day, too, because others assume if we can manage something one day, we can do it every day.  We debate with ourselves whether to even mention those sweet few happy moments to family and friends because we want to avoid those “I thought you were past that whole depression thing” conversations that inevitably emerge later on when we mention our illness has flared up again.

We’re supposed to “get help” and “get better”, to “get over everything” and “just be normal again”, but we’re not allowed to experience anything in between that horrible low and that “back to normal” state we’re pushed toward and expected to achieve.  It is even worse if it is a long-term or life-long struggle.  Many of those on the outside looking in can’t understand the ups and downs, highs and lows, the forward progress and backslides we go through, assuming we should be on a straight track from sick back to healthy again.  They claim we seemed “just fine, even smiling” when they bumped into us at the grocery store last month so they figured we were “over that whole depression thing” as if it is some fad we were doing for fun, something they believed we would be over by now.

People can be in physical pain or be struggling with health conditions that make it harder to function and it’s okay.  Even not being able to work is considered acceptable because others can see the pain.  Those momentary bits of happiness are seen as a wonderful treasure for someone who needs and deserves it after the battle they’ve been fighting.

Just because you can’t see my mental illness does not mean I am not struggling with it.  It does not mean that I am not fighting just as hard to function and to be as healthy as possible just like others with illnesses you can see.  And I refuse to relinquish the little pieces of happiness that I experience just because others assume that, in order for my depression to be genuine, I must be miserable and suffering every hour of every day without break or end.

The truth is that, no matter how bad I am struggling on any given day, no matter how hopeless my world feels, I try to seek out at least one reason to smile every day.  I have been told that I am the sweetest, most upbeat depressed person many people have ever met because I fight very hard to be optimistic and not give up hope.  I refuse to drown in my mental illness.  I have waged war on it and every single day I strike, reminding myself that there is still good in the world, beauty all around me, that there are still reasons to wake up in the morning and things to be grateful for in my life.

I strive to create good moments and memories whenever I can, to find reasons smile and laugh.  We have family movie and game nights.  I snuggle up with my partner and  watch movies together or laugh at silly animal videos online.  Though I struggle most days to socialize outside my house because my mental illness causes me to naturally isolate myself, I manage to joke here and there with friends online and share funny stories and memes.  I even occasionally go out, whether to enjoy some time out while the weather is nice or to spend a little time with family and friends.

None of that negates my diagnosis.  None of that minimizes my struggles.

It is no different than what someone with one of hundreds of different visible illness does to try and bring some joy into their lives to distract themselves from the pain.

It does not change the fact that the majority of the time I struggle to even pull myself out of bed or to eat.  It doesn’t change the fact that I spend most of my life struggling to even function, overwhelmed and crying.  It doesn’t change the fact that my illness is still always there, right under the surface, beneath that smile, silently eating away at me, trying to drag me back down.

I won’t apologize for my little bits of happiness and I won’t stop seeking them out.  I need them for morale and for my own self-care and sanity.  I need to seek out happiness in this world wherever I can find it so I have a reason to keep going and not give up even when my mental illness makes the world feels hopeless.

Being able to sometimes smile and laugh or enjoy part of your day when you’re struggling with mental illness shouldn’t be treated as a cardinal sin.  It should be applauded as a sign of strength and self-care.  Having a mental illness should not mean that you are never allowed to be happy again.  It is not an absolute, all or nothing, you either have depression or happiness, choice.

If we manage to find a reason to smile or laugh for even a brief period in our day, please cheer us on for our ability to do so.  Don’t rain on our parade just because you cannot see our pain or understand our illness.  Any smile, any momentary happiness is a victory against an illness that is intent on dragging us downward into misery and despair.  Don’t try to take that victory away from us.

To those who managed to smile or laugh today, good for you!  Keep fighting the good fight and don’t ever let anyone else make you feel like you’ve done anything wrong by being happy because you haven’t.  Embrace your happiness.  Cherish it.  You deserve it!

An Honest Dialogue About the Realities of Mental Illness

I woke up this morning to a message in my inbox on my Twitter author account.  Admittedly, I rarely open up messages on that site these days because the majority of them are either bots or phishing scams.  But, even by the small preview pane, I could see this one was different.  They began by explaining they had been reading through some of my writing.  I immediately opened it up to read through it and respond.

I won’t divulge any of what they wrote about because it is not my place to share their story, but as I read over my responses, I couldn’t help but believe that I needed to share my own words further.  To them, I wrote:

…Good morning. No need to apologize at all. I’ve written so very much that unless you’ve stumbled onto certain pieces, it’s unlikely a specific question would be answered. Honestly, it took me hitting a horrible low before I could find my voice. I had to reach a point where something desperately had to change or I knew I was not going to survive..

…As for overcoming my depression, I honestly don’t think there is such a thing, at least in my case.. It was more a matter of accepting my diagnosis for what it was and recognizing my limitations instead of letting the stigma surrounding mental illness control my perception of myself. I still very much have good days and bad days, but at the same time, I’ve gotten better at identifying when it is my depression versus when it is reality.. I’ve also filled my coping toolbox with so many different things so that I have different tools to help me cope with bouts of depression and anxiety.. I’ve learned to look at my mental illness much like diabetes – it’s an illness that causes one of the organs in my body to not function properly – there is currently no cure and it needs regular monitoring and care – but it is possible to exist and live with mental illness just like it is possible with diabetes.. I find myself still struggling, as well, to find a combination of medication that works right for me but I have sincere high hopes that in the future, when that combination is discovered, things will be much better and it will become easier for me to function..

…I apologize if you were hoping for some sort of secret cure all, or some way to make it go away on it’s own.. I don’t think something like that exists at this point, at least in cases such as mine.. I think, for me, it was a matter of changing how I viewed my illness and changing how I viewed myself.. Accepting that I am not broken or crazy but that I have an illness that affects my brain and that I deserve not only treatment but compassion and understanding, as well. I speak out and write a lot about what it is like living with mental illness because I want others to know, as well, that they’re not alone.. that others are struggling to fight similar battles and that we cannot buy into the stigma surrounding our illness, that we are not to blame for our illness, that our illness does not define us and that there is no shame in being mentally ill.

…I apologize for all the typos.. I was typing in the dark on my laptop.. I wanted to answer your questions right away and found my fingers struggling to keep up with my mind as I threw my answer out there.. I hope some or all of that helped.. I thank you for taking the time to read so much of my story and I sincerely wish you the best.. Please stay strong and don’t lose hope.. A mental illness diagnosis does not define you and it doesn’t have to be the end of anything. I truly love that the mental health community has embraced the semicolon ( ; ) as a symbol because it is used when a sentence could have ended but the author chose, instead to keep going. None of our stories are over either. We just have to keep fighting. If you are able, have a wonderful day. If that isn’t possible, please at least have a day. Keep going, keep powering through. And know that you’re not alone.

…Reading over all of this, part of me honestly feels horrible if anything I had written gave the impression that I had in any way found a path beyond my illness. As you can tell by much of my writing, I still struggle with horrible lows and have days where I consider getting out of bed, eating and doing my dishes as a victory. I’ve learned to differentiate between my illness and reality but that in itself does not change the physical things going on within my mind and body. My mind and body still go haywire regularly – I am working with my doctors to find a way to get them under control much like a diabetic manages their illness with insulin and glucose.. I know talking about looking at my illness differently doesn’t sound like much but it has been a huge stepping stone for me because it has allowed me to stop beating myself up for being ill, to stop hating myself and treating myself as if I am broken or crazy. By recognizing it as an illness and not something messed up inside myself, I was able to take back some control and begin working towards getting my illness under control. Things may be rough right now but this illness can be treated.. It just takes time. I’m not sure there ever will be a point where I’ll be fully functional, but I’d happily settle for being more functional than I currently am.

I honestly felt I needed to put this out there, to make sure everyone reading my writing understood that I am in no way touting any magical cure all for mental illness, nor am I implying in any way that mental illness is anything that a person can overcome by sheer willpower alone.  Mental illness is just that – an illness – and it needs treatment.  It won’t go away on its own.

I do believe, however, that we can destigmatize our illness and take back control over our lives.  We cannot will away how our symptoms present themselves but we can change how we view them and how we treat ourselves.

Please know that I’m a realist.  I’m not going to throw out those tired cliches about trying harder to be happy or how life will somehow magically be better if you let go of your past because I’ve been there myself and I know how infuriatingly useless they are.  I’ve worked through issues from my past and my mental illness still remained – because it is an illness that needs treatment.  I know firsthand how rough this illness can be and I won’t sugarcoat it because it does none of us any good to minimize our symptoms for the comfort of others.  I speak openly and honestly about what it is like to live with mental illness because I know holding it in and pretending things are okay doesn’t work.  Those of us suffering can barely wrap our own heads around our illness – how can we expect those who have never experienced it themselves to understand unless we throw it all out there and tell them?

I apologize if anyone who has been following my journey feels misled, hoping for some panacea, some advice or trick that will help their mental illness magically go away.  As far as I know, no such thing exists.

I may be a realist, but I’m also an optimist.  Since I have changed how I view my own illness, I have newfound hope for the future.  I have seen marked changes and improvements in the last couple years alone.  Though my fight is far from over, I truly believe that further advancements are possible and that things can and will continue to improve over time with continued treatment.

I write about mental illness not because I have all the answers but because I know it is a problem we cannot solve by pretending it isn’t there.  We need to talk about mental illness.  We need to fight the stigma.  We need to share our journey with others who are struggling so that they know they are not alone.  We need to stop blaming ourselves, stop hating ourselves, and accept our condition for what it is – an illness that needs medical treatment.

For everyone else out there fighting their own battles with mental illness, please stay strong, keep fighting, don’t give up hope.  See a doctor.  Talk about everything you’re going through without minimizing or sugar coating it.  Stop blaming yourself and hating yourself for your condition.  Please know that you’re not alone.  And most importantly, even if you cannot have a good day, at least still have a day.  None of our stories are over and we can get through this together.