The Frustration of Explaining Mental Illness to Those Who Have Never Experienced it Themselves

I would not wish mental illness on anyone else.  Having a mental illness is like waging a continuous war within yourself where half the time you are not even sure what is being fought over, only that the battle rages on.  There is never a true moment of peace.  You may have good days, yes, but even on those blessed days there is never peace because you can feel its presence, always looming, weighing down on your soul, preparing to strike again.  There might be small periods of respite here and there, the calm before the storm, but anyone fighting their own battle with mental illness knows it is only a matter of time before another downward spiral or another period of numbness, appears.  One of the worst things about having a mental illness is that we don’t even fully understand what is going on within our own minds and bodies, let alone have the words to adequately explain it to others.  Even more frustrating is when someone else puts us on the defensive because they do not fully understand what we are going through but assume they do because they have been exposed to it from a sideline view.

Someone who has never been in a car crash cannot reasonably say “I know what it is like because one of my family members has been in one” or “because I’ve taken care of someone who has had one”.

Someone who has never had cancer cannot reasonably say “I know what it is like because one of my family members has had cancer” or “because I’ve helped to take care of people who have had cancer”.

Likewise, someone who has never had a mental illness cannot truly understand what it is like to live with one, regardless of whether they worked with people who had one or had a family member diagnosed with one.

You can sympathize with someone else who is struggling but you cannot truly understand what it is like to live with mental illness merely by being exposed to it second-hand in others.  Witnessing others being traumatized is not the same as experiencing the trauma yourself.  It is not something you can experience vicariously and fully understand the suffering.  As much as we might try to explain what it is like in order to help others somewhat understand, there are no words we possess that would adequately explain all that we are going through.  And anything we say is usually just the tip of the iceberg, minimized for the benefit of others because we don’t want to overwhelm or scare anyone else with the horrors of our reality.   Mental illness is something that you truly have to experience firsthand to fully understand.

Nothing is more frustrating than having someone verbally attack the core of our illness as “making no sense”, expecting us to fully explain something that we ourselves have trouble understanding.  Or to be called out, as if we are somehow inherently wrong for even being mentally ill at all.

I have been diagnosed with generalized anxiety disorder, major depression and P.T.S.D.

Due to severe anxiety attacks during periods of high stress, one of the agencies I work with recently arranged a home visit as an alternative to my having an office visit.  I had someone interject that their mother is bipolar and has done the same thing, claiming that it is ridiculous that her mother can attend highly populated events such as street fairs but cannot go to a downtown office to complete some paperwork.  She then demanded to know whether I was equally unreasonable, attending random public events while claiming I was incapable of going out to an appointment.

I tried to explain that it isn’t how generalized anxiety works.  I am not anxious being around people.  I do not have social anxiety.  With generalized anxiety, I live in a constant state of heightened anxiety that is worsened by stressful situations.  On a scale of 1-10, most people start off an average day around a one or a two.  If there is nothing to worry about, there’s no reason for an average person to be anxious.  If someone’s rent is coming due and money is tight, their anxiety level might be raised to a two or three.  If, on top of that, they’re worried about being laid off, their anxiety might be raised to a three or four.  Not getting enough time with your kids, needing unplanned repairs on a home or vehicle that you cannot afford, unexpected illnesses and deaths all increase anxiety.  With each newly added stress, anxiety continues to compound and raise.

Now imagine starting every day at a 4 or a 5.  Even worse, most of the time you’re not even sure why exactly you’re anxious.  You just know that feeling is there.  You’re notably on edge, you’re distracted, you’re hyper-vigilant.  Your body is physically reacting to the stress.  You are visibly flustered, your chest is tightened, you find yourself shaking or bouncing your limbs or no reason, you have trouble focusing your thoughts and forming coherent words.  Each new added stress only raises everything higher.  It doesn’t take much until you find yourself at a 7 or 8, in a full blown anxiety attack.

Consider going to an office to do paperwork, starting at the 4 or 5 those with anxiety might begin each day with.  If a previous visit there did not go well, your mind relates the two and it adheres the past to the present situation.  If there were subsequent visits that did not go well, each of them is an added stress, as well.  Your mind is hyper-vigilant, constantly reviewing situations and drawing connections, trying to protect you from duplicating a previous bad experience.  After a few bad experiences somewhere or with someone, that compounded anxiety becomes too much to bear.   Your mind begins firing off danger warnings and your body reacts accordingly.  Your fight or flight response kicks in.  You want to run away, to scream, to avoid it at all costs.  You freeze like a deer caught in the headlights or you become agitated and aggressive because you feel an overwhelming need to protect and defend yourself.  It all occurs subconsciously in the brain.  Your anxiety rises on its own without any conscious decision on your part.  You are not intentionally overreacting or being melodramatic.  Your mind and body are just reacting to the situation at hand based on the data it has compiled.  It is the truth of living with anxiety.

Attending a populated event is another situation entirely.  In all honesty, each situation is different depending on our previous experiences with the location, the people involved and many other contributing factors.  We cannot even reasonably predict ahead of time whether a situation will feel safe or not because literally anything could trigger a raise in anxiety.  It never takes long before that heightened anxiety reaches dangerous levels and an anxiety attack ensues.  We have very limited control over situations.  Our mind and body are steering the car and we are just along for the ride.

My explanation fell on deaf ears.

Perhaps even worse than trying to help others understand anxiety is trying to explain depression.  Too many people who have either never experienced depression or who have only experienced a temporary or situational, mild bout, have a habit of aggressively attacking those suffering from more severe, debilitating depression for not being able to “bounce back” quickly enough to meet their standards.

We are accused of being lazy and having pity parties.  We are told that they “know what it’s like but..” you have to stop feeling sorry for yourself, you have to be more positive and at least try, you have to pull your shit together and do what has to be done.  We are accused of not trying hard enough, of not even trying at all.  We are asked why we are not even working part time and told of a myriad of other people who were able to magically pull themselves together, shamed into feeling like we are horrible people for being unable to function as well as they or someone else they know did.

I have tried explaining the realities of severe depression, only to have it fall on deaf ears, as well.

Those of us suffering from depression are not having pity parties.  Depression is far more than just being sad or feeling negative about our circumstances in life.  There are days when the world feels bleak and hopeless, where you are convinced you are completely alone and become trapped in an empty numbness that renders you virtually immobile.  It isn’t that you are not aware of everything that needs to be done or that you don’t want to do it – you are trapped within yourself, unable to pull yourself up to do even the simplest of tasks.  You might lay there for hours, beating yourself up as your inner dialogue drums into your consciousness everything you could be doing, should be doing, and how broken, worthless and useless you are for being incapable of doing anything at all.  There are days you spiral down into negativity, tearing yourself apart viciously for being garbage because some part of your brain believes that is what you deserve.  You tear yourself apart for being broken, damaged, and flawed worse than anyone else could ever do.  There are days when the tears keep flowing even though you cannot pinpoint exactly why, beyond “life itself” and days you’ll sit in a fog, doing nothing or randomly puttering, losing hours at a time.

Whether we’re trapped in numbness or spiraling down, our minds are constantly whirling, reminding us of all we should be doing and how much of a failure we are for not accomplishing everything we believe we should.  We desperately want to do more, to do better, to do anything at all.  We hate ourselves for not being able to do everything we believe we should be able to do.  We feel like a failure that has let everyone down.  But our minds have betrayed us.  We are in a constant battle within our own heads.  We have so many emotions, so much hurt, pain, anger, self-loathing, sadness and confusion swirling within our heads that it is hard to sort it all out and think straight.  Though we can pinpoint the cause of some of it, the majority is so broad and vague that we don’t even understand where it is coming from let alone know how to begin explaining or addressing it all.

Any job, even part-time, is difficult when we cannot plan from one hour to the next, let alone one day to the next, whether we will be spiraling down into that abyss or frozen in numbness.  Yes, e may have good, functional days, but they do not appear on any set schedule.  We have no idea how or when our depression will strike next or how long it will last. We are not being lazy or just not trying hard enough.  We just cannot reasonably commit ourselves to a schedule when we don’t know how well we’ll be able to function an hour from now, let alone a week from Tuesday from 8am to 4pm.

Perhaps the most asinine assertion I have ever heard from people who did not understand and had never experienced what I was struggling with was the claim I hve heard numerous times that “only soldiers suffer from P.T.S.D.”, as if I was somehow disparaging the armed forces with my diagnosis.  Post traumatic stress disorder is more broad-reaching than the military.  It is fairly common with those who have suffered from years of abuse, especially during their childhood as I have, or have experienced traumatic or violent events in their lives such as rape, as I have.  Flashbacks, nightmares and night terrors are not exclusive to those in a uniform.  Do not minimize my trauma because I fought a different kind of war on a different type of battlefield.

I truly appreciate when people acknowledge my diagnosis and attempt to empathize with all that I am struggling with because it really is a daily battle.  It is heart-wrenching and honestly makes me want to cry whenever someone has been through something so similar that they can truly relate to what I am going through because I wouldn’t wish this on anyone.  My heart goes out to everyone fighting a battle within themselves that they cannot seem to fully explain and constantly feel judged for having because I have been there and understand how exhausting it is to have to defend yourself for your diagnosis.  But please don’t ever use the second-hand experiences you’ve witnessed others having to minimize what I am going through.  Knowing someone who has mental illness or even working around people that have been diagnosed with a mental illness is not the same thing as living with one yourself.  Even individual diagnosis can differ greatly, as well, so you cannot measure two personal experiences by the same bar.  You cannot truly understand what a person is going through before walking a mile in their shoes so please stop judging me for my diagnosis when you have no idea of the battles I am fighting inside.  I truly appreciate compassion and empathy but please leave your judgment at the door.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s