The Depression Chart – Helping Others Understand Depression

*Ever since I created my Anxiety Chart, I have been asked by readers to create a similar chart for depression.  After much thought and consideration, this is the chart and accompanying graph that I designed.

Many people do not understand depression, assuming it is just random bouts of sadness and crying.  Unless someone has suffered through their own struggle with depression, it is near-impossible for them to truly understand how debilitating it can be to live with that diagnosis.

One of the hardest parts of explaining depression is that it is neither rational nor is it predictable.  It is hard to provide relatable examples because the feelings connected with depression would feel wildly irrational to anyone not experiencing them at that moment.  It is also impossible to predict or predetermine depression because it often comes unexpectedly in waves.

Therefore, instead of providing a chart with relatable examples, the chart I devised shows the increasing intensity of this mental illness.  My hope is that the statements provided at each level, combined with the descriptions included, will help those who have never struggled with depression understand how our frame of mind is magnified as our condition worsens.

It is also important to note that depression is not all sadness and hopelessness.  Instead of providing a chart listing levels 1-9, I have split this chart in half.  There is a 1-4N to designate worsening stages of numbness and a 1-4D to describe stages of downward spiral.  This chart is extremely simplified, yet illustrates how, as depression worsens, the intensity of the condition increases.  However, unlike conditions like anxiety that worsen in one direction, depression can and does frequently occur in both the realms of numbness and hopelessness to varying extents.

depressionchart

It is also important to note that depression is not linear.  It comes in waves and spikes.  It is not uncommon to struggle with days of increasing numbness, only to wake up the following day in the midst of a downward spiral.  Depression randomly alternates between the two, with no rhyme or reason to the length or intensity on any given day.  Some days you feel nothing at all, other days you feel everything too strongly.  There’s no way to predict when you will be pulled in either direction or how long either will last.

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There will be days when someone might even feel fine, or even just more functional.  On other days, you might be unable to pull yourself out of bed or might seem to cry over everything.  There are days that feel like a struggle and others that feel completely impossible, days where you find yourself crying a little bit more and days you just want to give up.

When describing increased emotional pain, the best example I can think of is to compare it to the pain of loss.  Milder stages of depression might be akin to losing something that matters to you, perhaps something of sentimental value.  As depression increases, imagine the pain of losing a beloved pet, your parents, your spouse or your child.  Imagine the ache and the pain, the feeling in that moment of things never being okay again, of wanting to give up, to crumble under the weight of that pain.

Except the person you are mourning is yourself.  Your happiness and who you used to be.  And the loss comes again and again in waves, sometimes mild, other times so severe that the tears and the pain feel like they will never stop.

At the same time, you loathe and disgust yourself.  You feel worthless, a waste of space.  Your own mind lies to you, convincing you that the world would be better off without you in it.  That is where rationality parts ways.  Everyone can understand loss, pain and grieving.  But it is hard to wrap your head around losing yourself, let alone hating yourself, unless you have spiraled down to those depths yourself.

Yet those feelings are there, along with a tremendous amount of guilt.  You feel guilty that you are such a mess.  You feel guilty for subjecting everyone else to your mess, as well.  Often, you are also ashamed of your illness because you feel you should be stronger, more capable, better than you are.  That shame often leads you to lie or minimize the intensity of your suffering for fear of being judged.  Depression makes you feel like a failure just for being sick.

When someone is struggling with depression, their very perceptions become distorted.  It is common for everything to feel much worse than it actually is.  Think back to when you were a little child.  Things on the counter felt up way too high, the door knob out of reach.  Even simple things like tying your shoes were a struggle and felt like a monumental task that took maximum effort and concentration.  That is how everyday tasks feel when you have depression.  Everything feels harder.  Every problem feels bigger.  You feel small and helpless.

Think back, too, to when you were a young child and were upset with your parents, when you felt completely misunderstood and all alone in the world.  Think back on the time when your four or five year old self was convinced you should run away, that nobody would care if you were gone. Think back to any other point in your life, as well, when you felt completely alone, when you had no help, nobody there.  With depression, those feelings are ever-present.  Your mind tells you that nobody understands, that you are alone in the world.  Depression isolates you by telling lies that you do not matter.

Think back to the last time you were sick, laid up in bed with a bad flu or stomach bug.  Remember how physically and mentally exhausting it felt to even move or pull yourself out of bed?  How easily you found yourself worn out, just wanting to lay back down and sleep?  How you put off going to the bathroom for hours because you didn’t even want to move?  How you ate frozen waffles or canned soup for three days because you just did not have the energy or the desire to cook a real meal?  That is what depression is like, too.

The numbness, however, is hard to explain to anyone who has not experienced it firsthand.  If you’ve ever had someone or something upset you so much that you no longer cared, magnify that lack of concern tenfold.  It is similar to that catatonic shock following an accident or trauma.  You feel nothing, lost, blank, numb.  Eventually, you mentally shut down.  You are immobile, held hostage, trapped in your own mind.  You have no interest or motivation to do anything.  You see no point in even trying.

I wish there were more relatable examples I could give but it is impossible to rationalize the irrational.  There are some examples that are somewhat similar in one way or another, but even those don’t quite equate.  The best I can do is to illustrate the directions depression can go and to quantify how bad it can get.

When trying to explain depression, the best someone who is struggling can do is to explain how close we are at the given moment to either shutting down or wanting to give up.  The worst part is that the status can change in a moment’s notice on any given day.  There is no way to predict when it will veer off in either direction, let alone the severity of the bout.  You cannot even predict what will cause your condition to worsen, or whether it will even be something large or small.  Something as tragic as a great loss is just as likely to cause a period of numbness as a simple broken plate is to cause a severe downward spiral.  There are times we are honestly not even sure why we are feeling the way we do, only that the depression is there.  There is no rhyme, reason or rationality to any of it.

It is not something that a person can control in any way, either, let alone simply snap out of on their own accord.  Depression is a mental illness.  It is a medically-diagnosed condition that severely affects the ability to cope with life, negatively impacting and impairing both thoughts and behaviors.  Having a mental illness is no different than having any other type of illness.  Much like a diabetic has a pancreas that is malfunctioning, when a person has a mental illness, their brain is not working correctly.  The only difference is the organ affected.  Both conditions need medical treatment.

I understand how difficult it must be for someone who has never suffered from depression themselves to understand. Depression seems irrational because it is.  It doesn’t make sense, even to those of us struggling with it every day.  We find ourselves on a roller coaster ride that is speeding out of control, flying up and down every which way, with no way to stop or slow down.  Nobody asks for a mental illness.  Depression is not something anyone has done to themselves or is causing because they are not trying hard enough.  We don’t understand how we even ended up on this ride, let alone how to get off.  How can we adequately explain something we don’t even understand ourselves?

The confusion surrounding depression is also in part due to the stigma attached to mental illness in general.  For years, anyone with a mental illness was labeled as lazy, crazy, dangerous or a joke.  Either way, they were not taken seriously.  Mental illness was a dirty word that wasn’t discussed openly.  People fear or mock what they don’t understand.  The lack of education about medical conditions like depression led to wide-spread ignorance and misinformation.  Unfortunately, once that cat is out of the bag, the damage is done and it will take much longer to properly educate people about mental illness than it took to originally spread the falsehoods and misconceptions.

I understand fully that depression makes no sense to someone who has never experienced it themselves.  It honestly makes no sense to us, either.  But please know that depression is much more than just merely feeling sad from time to time.  With depression, you sometimes feel everything so strongly that it is completely overwhelming, the emotions feel agonizingly painful and never-ending, and the world feels utterly hopeless.  Other times, someone with depression is completely numb, feeling absolutely nothing at all.  Either way, everything feels much harder, more intense.  Depression is exhausting, both physically and mentally.  Perhaps worst of all, you feel helpless to do anything, like you have no control over your own mind.  And depression is not linear.  It goes up and down, every which way, changing direction and intensity on the drop of a dime.

I wish I could provide a chart that was more relatable for those who have never experienced depression, but, as I have stated before, there really is no way to rationalize the irrational.  The best I can do is to lay out what depression is like in a very simplified form and hope for your empathy, compassion, understanding and patience.

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A Picture is Worth a Thousand Words When Words are All You’ve Got – Living with Aphantasia

I have a condition called Aphantasia.  Simply put, I cannot visualize.  Where other people can close their eyes and conjure up images within their minds, all I see when I close my eyes is blackness.

It might not sound like a big deal because in many ways it is not.  My Aphantasia did not prevent me from doing well in school or participating in activities and sports as a child.  I enjoy writing and art, I can cook and bake, and go through a thousand different menial tasks that are unimpeded by my condition.  My life in many ways is normal and unhindered.

That is not to say that my Aphantasia does not impact my life in many random ways that others take for granted.

For example, I am horrible with people’s names.  I can meet someone a dozen times and still have no clue what their name is when I meet them again.  There will be a familiar itch that scratches at my memory but until something rings a bell and a connection is made, I am at a loss.  Most people can simply close their eyes, conjure up a picture of someone and attach a name to that image.  My mind contains no images, only words.  My memory is full of descriptors.  For instance, I might remember someone by an event we attended together or a pet they own and until that descriptor is revealed once again, I will often draw a blank.

This extends from people to items, as well.  Even if someone catches me as I am headed to the store and asks me to pick up something for them, unless I am familiar with the specific item or write it down, chances are I might get it wrong.  Though I try to retain as much information as I can on the fly, I am easily thrown off and confused when faced with similar-looking items.  I cannot recall images, so I will question everything from size to brand to scent or flavor.  My mind will usually hone in on a color or a shape, leaving me to stand there, holding two similar items, trying to decipher which might be the right one.  Most people will simply take a mental snapshot to help them remember which item to get.  Instead of one picture that retains all the important information, I would have to store away the brand, size, color, flavor, scent, logos and a multitude of other descriptive words.

I am severely directionally challenged.  I could pass through somewhere multiple times and still find myself lost when I go there again.  I get turned around easily, as well.  Most people can close their eyes and recreate images of places they have been before.  However, unless something very specific has happened in that location that I will distinctly remember with words, the image of most places remain in my head only as long as they are within my sight.  Because I cannot close my eyes and instantly picture a walk I have done many times before, there is a distinct chance I could get lost headed there again.  I might remember that there is a library on a specific street somewhere downtown but if the many random houses and buildings along the way mean nothing to me, nothing will feel familiar until the library comes into sight.  If I turn onto the street a couple blocks too far, I might wander the wrong way for a period of time before the neighborhood changes enough for me to realize I have gone the wrong way.

I am also horrible with directions.  Many people can close their eyes and retrace their steps.  They can easily give detailed directions based on visuals they can recall, counting in their head, telling people to go down this street 8 blocks, take a right, go down 6 blocks more and take a left.  Even if I have been somewhere before, I have trouble giving precise directions like that.  Because I cannot visualize, short of memorizing every street and cross street in every town I have been in precisely in order, my brain has to come up with easier markers to remember, things that will stand out to me.  My directions might include a house that still has their Christmas lights up in July or a tree with a huge knot on it that looks like a face.  Simple things like a change in decor or a chopped down tree, however, will hurl me into a state of confusion that leaves me instantly lost again.

Though I enjoy being artistic and have been told I have both talent and a good eye, I have trouble creating physical representations of things without having pictures readily available.  I love to sketch and paint, but cannot conjure up images in my mind so I need to reference actual pictures before I can get spacial differences and angles just right.  Because I have to rely on pictures, my artwork often lacks originality.  At best, it might contain inspiration from multiple sources, yet it still always feels vastly unoriginal to me.  My writing, on the other hand, has greatly benefited from my lack of visualization.  I tend to be superfluous with my words, always trying to verbally paint images others can understand even if, like me, they cannot see it in their head.

I am overly sentimental and cling to mementos and photographs because they give me a physical reminder that I can see and hold, something that is more than just words.  No matter how many times I have seen someone’s face, the moment they leave my sight, I can no longer picture them.  In my mind, I will cling to the detail of edges and curves of faces and bodies, freckles and dimples, wrinkles and scars, to find descriptors that set them apart.  I have traced the angles of my fiance’s face a thousand times so I know the shape and feel of his face better than I know my own, because when I close my eyes, no matter how hard I try, I cannot see him.  Both my parents have passed away.  I don’t have any pictures of them so their faces are lost to me forever.  While watching a movie or show, I might see an actor and think “my father had a jaw like that” or “my mother stood like that when she was upset” but those are only small segments, similarities I recognize, random sparks and connections.  But the whole of their faces are gone.

Though I take classes in both tai chi and yoga, I always feel an entire segment of my classes are wasted on me.  Whenever the instructors begin an exercise in meditation and visualization, it is completely lost on me.  They will suggest everyone closing our eyes and imagining warm lights emanating from our cores or roots taking form and helping to ground us to the earth.  When I close my eyes, however, all I can ever see is blackness.  I spend that time, instead, concentrating on the feel of my breath entering and leaving my body, the feel of the air on my skin.  I turn my entire focus inward to the here and now, trying to release the jumble of words ever-floating throughout my head.  It is not meditation as others might do it but it is the best I can do.

I can go on and on with all the ways, big and small, that Aphantasia impacts my life.  Think of all the mental pictures most people store away in their minds.  Mental pictures for all the people, places and things they encounter every day of their lives.  Not being able to create mental images might seem like a very trivial thing – until you take the time to try and describe all those pictures using just words.

Aphantasia can be exhausting.  Most people store a multitude of images in their minds because it is faster, easier and more efficient.  Imagine if you had to describe every one of those images using words to someone who had never seen what you were describing.  You had no way to show them a picture, no way to help them understand other than describing everything. Imagine if you had to rely solely on your words.  Imagine how time consuming it would be to collect a variety of descriptors for every item instead of being able to share one simple image.  Now imagine that being your every minute, every day.  Imagine only being able to pull up words for everything instead of images.  How many words would you need?

In high school, my algebra teacher gave the class an assignment to write a paper, step by step, on how to make a peanut butter and jelly sandwich.  The purpose was to teach the importance of showing all the work and not leaving out any steps.  However, I think this technique would work wonders for raising awareness for Aphantasia.  It would be a good exercise to have someone have to describe things in their lives, from the most important to the everyday trivial, to a sketch artist using only words.  Much like nobody in my algebra class could successfully make a peanut butter sandwich by writing out the detailed steps one by one, I imagine most people would struggle equally as hard to find all the words to accurately describe a snapshot of their life.

People often assume I am forgetful or absent-minded, easily confused and lost in my own mind.  The truth is, I often have to work at least two or three times as hard to recall anything because I cannot take the shortcut of storing pictures instead of words in my memory.  People often say that a picture is worth a thousand words.  Take a moment and think of a vacation picture or an old family photo that means a lot to you.  Think of the different shades in that sunset along the coastline on your honeymoon or the creases in your deceased grandparents’ faces when they smiled, that small scratch on the rear side just above the bumper on your first car or the way your prom date looked standing next to it.  Imagine trying to recreate those whole scenes again, by memory, piece by piece, using only words.  Would a thousand words be enough?  Welcome to my world.

I Have Depression.. But I am Happy..

I have struggled with depression my entire life, in part due to a genetic mutation passed down to me from my parents that affects the way my body metabolizes specific chemicals my brain needs to moderate my moods.  I regularly go through horrendous downward spirals where I feel completely broken and worthless, where life feels utterly hopeless.  I struggle with long periods of numbness where I have difficulty functioning or even finding the motivation to get out of bed.  On bad days, I will cry until my face is sore and my voice is hoarse, and it is unlikely I will be able to accomplish much more than basic self-care.  I am battling an illness that warps my very perceptions of life and continuously exhausts and pains me both physically and mentally.

But I am happy.

I have an amazing fiance who is very supportive of me and my diagnosis.  I have healthy, kind, smart and all-around wonderful children who have grown into incredible adults.  My fiance’s children are both amazing, as well. Together we have all formed a beautiful, blended family that I love with all my heart and am proud to call my own.  I have a team of doctors who actually listen to me and a treatment plan that is slowly but surely helping improve my quality of life.  And I have a blossoming writing career that has given me a true sense of purpose and an ability to help others in need.  I have many wonderful blessings in my life to be grateful for, many reasons to be happy.

Yet I have been diagnosed with depression.

That is because a mental illness like depression has nothing to do with happiness.  Depression is not caused by being in the wrong frame of mind or just not trying hard enough to be happy.  Having a depression diagnosis has nothing to do with feeling sad, a little blue or under the weather.  People with depression aren’t being Negative Nancys or Debbie Downers who just need to learn to lighten up and look on the bright side.  My diagnosis wouldn’t just disappear if I just tried to smile a little harder or maintained a more positive outlook on life.  My depression has nothing to do with whether or not I am happy.

I have trained myself to find reasons to smile everyday.  I am usually the first to look for something positive in even the roughest of situations.  No matter how hard my own day might feel, I always try to show compassion and kindness to others.  If nothing else, I am grateful each day I wake up and thankful of all the loving and supportive people in my life and share that sentiment regularly.  I am hopeful for the possibilities the future may have in store for me, as well.  Some of my friends lovingly joke that I am the happiest, most positive little depressed person they know.

Yet I continue to struggle with my depression diagnosis.

My brain does not care whether or not I am happy or grateful, whether I am hopeful, compassionate or kind.  My mental illness is caused by my brain not working properly, much like a diabetic’s pancreas malfunctioning causes their condition.  I have no more control over having a mental illness than someone else having diabetes, heart disease or another medical condition they may have been passed genetically.  Yes, events in my life may have further exasperated my mental illness, much like having excessive sugar might worsen a person’s diabetes or having foods high in cholesterol might affect the severity of heart disease, but my condition preceded any of the traumas and abuses I have endured over the years.  I have even sought treatment to help resolve those issues to the best of my ability, yet my depression has remained.

Because depression is an illness, a medical diagnosis with both mental and physical causations.

It is not all in my head.

It is not a state of mind or an emotion.

Depression isn’t about being sad.

The cure for depression is not happiness.

Like any other illness, depression needs ongoing medical treatment.  Doctors need to not only diagnose the condition, but also to isolate and treat both the mental and physical reasons for the illness, as well. Though doctors often utilize psychological treatments like therapy, meditation and mindfulness, they usually also include psychiatric methods and medications to help treat the physical causation.  That is because doctors recognize mental illnesses such as depression as a verifiable disability that deserves a comprehensive, multi-pronged treatment.

In cases like mine where my depression has a genetic causation, my diagnosis is permanent.  I was born with it much like some children are born diabetic.  You would not blame a child for being born with a pancreas that was incapable of functioning properly so please don’t blame me for the fact that I was born with organs that malfunctioned, as well.  The only difference in my case are the organs affected.  No matter how happy I am or how positive my outlook is on life, my liver will never be able to metabolize the substances my brain needs in order to function properly.  I will have this medical diagnosis and need ongoing treatment until the day I die.

If I confide in you that I am struggling with depression, please don’t try to encourage me to try to be happier and more positive, or point out all the blessings I have in my life.  I am happy and grateful already.  You do not need to remind me to be hopeful for the future because I already am.  Please don’t blame me for my diagnosis either, insinuating that I wouldn’t be ill if I just tried a little harder.  I did not ask for this diagnosis, nor did I cause it.  What I need from you is the same compassion, understanding and support you would give anyone else with any other medical diagnosis.

Because, though I am already happy, knowing you were doing your best to be supportive and treat me with the same respect you would someone struggling with other illnesses would make me even happier.

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Republished on the Mighty on 4/4/19.

When Will Insurance Companies Realize Fighting Against Patient Care Is Not Cost Effective?

Other than my ongoing battle with mental illness, I have been relatively healthy my entire life.  I don’t drink, smoke or do drugs.  Prior to the last couple years, other than mental health doctors, I rarely went to the doctors at all beyond basic check ups.  Other than medications for my mental illness, I have rarely relied on any medication stronger than acetaminophen or an antacid, and only then if absolutely necessary.  Due to this fact, I had little experience with battling my insurance company for most of my life.  These last two years, however, have been a real eye opener.

I have struggled with severe depression and anxiety my entire life.  For years, I was labelled “treatment resistant” because no medication I took ever seemed to work.  A couple years ago, my meds doctor at my mental health clinic sent me for a genetic test to help determine what prescriptions might work better for me based on my genetic make up.

The test came back with an unexpected result.  I had a genetic mutation that rendered my liver incapable of metabolizing folic acid in any usable amount.  Broken down folic acid, called l-methylfolate, is used by the neurotransmitters in the brain to help moderate moods.  Because my own body could not metabolize folic acid into l-methylfolate in any usable amount, the neurotransmitters in my brain had been literally starving for what they needed for the majority of my life.

It was a fairly easy fix.  There’s a pill on the market of broken down folic acid.  It is, on average, under $200 a month.

It is something my body cannot make on its own and my brain needed to function properly.  Yet my insurance company fought me on it for almost 9 months.  In the meantime, my doctor had to prescribe me a collection of high dose antidepressants, anti-anxiety and sleep aids in hopes that together they might even slightly touch my mental illness.  I had a revolving combination of medications, anywhere from four to six prescribed at a time, with the dosages being steadily increased.

The cash price of the one anti-depressant alone that I took during that time runs on average $250-$300 per month.  The one anti-anxiety medication I took runs between $45-$85 per month.  The one sleep aid ran around $20 a month. Other medications we tried ran between $10-20 apiece.  Altogether, I was taking between $450-$500 a month worth of medications that were barely able to do anything for me because my insurance company did not want to pay less than $200 a month for the medication I truly needed.

After almost 9 months of fighting and multiple appeals and fair hearings, I finally got my prescription approved.  These days, I am taking my l-methylfolate, along with one moderate but inexpensive antidepressant and a natural sleep aid.  Altogether, the cost is still under $200 a month.  I honestly cannot fathom why the insurance company would have opted for 9 months to pay over double that amount on a less effective treatment instead of just approving what my doctor had initially prescribed me, what I truly needed.

I wish I could say that this was an isolated incident but over the past couple years, I have had multiple run ins with my insurance company in regards to my treatment.  Though relatively healthy for the majority of my life, these last two years have been plagued with multiple health issues, issues my insurance company has chosen to fight me on, as well.

Two years ago, I was rushed to the emergency room in severe pain.  It turned out that a large cyst had grown on my ovary.  Within the cyst, a mass of tissue had begun to grow, as well.  Together, they had put increasing pressure and weight on my ovary, contorting it and damaging not only the ovary itself but also on the veins around it.  The ovary was damaged beyond repair.  There was a concern that the mass within the cyst might be cancerous.  Rather than doing a biopsy then surgery that would prolong my suffering, my doctor opted to remove the ovary first then biopsy the mass on it afterwards.

Again, it was an easy fix.  The ovary had to come out.

Yet the insurance company dragged their feet for over two months.  For over two months, I was in constant agony, on bedrest, slowly awaiting the pre-op tests to get approved, let alone the surgery itself.  For over two months, I had to take pain medication and see my doctor almost weekly to check my blood pressure, monitor my pain levels and make sure no infection had set in.  For over two months, I had to have a coordinated care provider come to my house to assist with things I could no longer do for myself because I could barely move on my own without excruciating pain.

The ovary, along with the cyst and the mass of tissue within it, had to be removed.  The insurance company ended up having to cover numerous extra doctor appointments more than was necessary, along with added prescriptions and periodic home health care assistance, all because they delayed the approval of treatment that was ultimately going to be needed to begin with.  Dragging their feet and delaying approval did not save them any money.  Quite the opposite.

Most recently, during a ct scan it was discovered that I have two meningioma tumors on my brain.  Though 80% of meningiomas are benign, doctors still have to test them to make sure they are not.  I first saw a neurologist who, in turn, referred me to a neurosurgeon for testing.  The neurosurgeon ordered both an EEG and an MRI with and without contrast to be done so they can get a better look at my tumors.

It has been almost two months since the meningiomas were discovered.  The EEG was completed, yet we’re still waiting for insurance approval for the MRI.  Meanwhile, my neurologist keeps scheduling appointments because, until he knows for sure that they are benign, he has to keep monitoring me for signs of seizures or other averse effects.

Best case scenario – if they are small enough and benign, it is considered watch and wait, with them being periodically monitored and measured once or twice a year to look for changes.  Worst case scenario – they are malignant, I need surgery and radiation.  But until the MRI is done, it is a case of *Schrödinger’s tumor – we won’t know whether it is benign or malignant until the doctors get in there for a better look.

Meanwhile, I keep going in for more or less useless appointments where my doctor keeps checking in to ask how I am feeling and checks my vitals, then we sit around discussing how the insurance company still hasn’t approved the MRI.  Yet, he can’t put off these appointments until he knows for sure whether we need to worry about these tumors or not.  So the insurance company is getting billed for appointment after appointment to check in on how I am doing while we wait for the MRI instead of just approving the MRI that will ultimately be needed anyway.  These tumors are not going to go away on their own.  The MRI is needed to fully diagnose them and my neurologist is not going to allow me to fall between the cracks just in case they are malignant and surgery is needed.

I honestly do not understand why insurance companies fight patients and their doctors on treatment that is needed.  It is not like any of my treatment was something ordered on a whim.  There was a prescription for a substance my brain needed that my body could not make on it’s own.  There was a surgery to remove an organ that was irreparably damaged and causing me severe pain.  And there was a test needed to determine whether the tumors on my brain are benign or malignant.  Three cut and dry cases of treatment that was very much needed and not in the least extravagant or superfluous.

Yet, the insurance company’s decisions in each of these three cases over the last year has cost them, each time, much more than it would have cost them if they had approved the treatment the doctors in each case recommended.  If a prescription, a test or a procedure is ultimately needed and there is no other possible recourse to resolve the issue, why would the insurance company either deny it outright or drag their feet in approving it?  It will only end up costing them more in the long run.

I with I could say my experiences were isolated incidents.  In the course of my battles over the past two years, I have spoken to numerous others who have been and are currently fighting their insurance companies, as well, for the treatment they need.  It appears to be more commonplace than most people realize.

When did it change that healthcare became more about trying to cut corners and save money than in treating the patient and doing what was best for their health?  Has it always been this way?  Wealth over health.  Profit over people.  It’s honestly disgusting, despicable and deplorable.  Having been relatively healthy for the majority of my life, I never realized what a struggle it can be to get the treatment you need covered.

While I understand and acknowledge that fraud is rampant in medicine today and insurance companies need to validate claims before approval is given, once there is proof to support the medical treatment requested, it makes little sense to drag out or deny the claim further.  Insurance companies could ultimately save substantially more money not by fighting patients on the treatment they require but by approving and expediting it so that their overall treatment and recovery takes less time and costs less money.

 

* Schrödinger was an Austrian scientist in the early to mid 1900’s.  He developed a theory made popular in recent popular nerd culture, called the Schrödinger’s cat paradox in which a cat is sealed in a box with a flask of poison and a radioactive source.  According to his theory, it is accurate to assume that the cat is simultaneously both alive and dead because either option is probable.  Until you open the box and check, you do not know for sure.  I referred to my meningiomas as Schrödinger’s tumors because, until the MRI is done, there is no way to know for sure whether they are benign or malignant.

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.

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