GUILTLESS

I have never felt guilty for being ill; yet, I see so many in my Gastroparesis support groups who struggle with this issue, and I cannot quite grasp why this is the case.  I can understand feeling frustrated or sad because of the limitations this illness places upon us, but guilt is another matter altogether.  Guilt implies that the person living with the illness is somehow culpable, responsible, or deserving of blame for the effects of said illness, and this is most certainly not the case.

Yes, our lives have been altered, perhaps forever, by this cruel, unforgiving disease.  Many of us can no longer perform routine chores, run errands, participate in the activities we once enjoyed, maintain employment, or reach once easily attainable goals we set for ourselves pre-diagnosis.  This is reality.  It is a consequence of our illness – but it not an act of the will.  In other words, we did not ask for our illness, we did not cause it, nor do we welcome it, embrace it, or seek to perpetuate it.  We did not fall ill because we are being punished for some wrong-doing in our past or because we are somehow so detestable that we “deserve” this disease.  Bad things happen; they just do.  They happen with no rhyme or reason and are the result of causes and forces that are often unknown to us.   

It stands to reason, then, that if we are not to blame for our illness and all the restrictions that accompany it, we should not feel any sense of guilt.  Yes, I realize that medical professionals, employers, family members, and friends sometimes behave as if it were our fault and do their best to cultivate our feelings of inadequacy and shame.  They expect us to behave exactly as we did prior to diagnosis, and they are most unforgiving of any perceived failures or shortcomings on our part.  But their opinions are not fact, and we do not have to believe these misguided notions. 

Hear me loud and clear, please:  YOU ARE NOT TO BLAME FOR YOUR ILLNESS!  You did not cause it, and you cannot wish it away, nor will it away, nor always regulate its adverse effects.  The limitations are real.  They exist.  They are not all in your mind, and they are not under your control.  You are not lazy or worthless or somehow “lesser” because you cannot meet some unreasonable standard of perfection set for you by the healthy people in your life.  Your illness will not go away if you ignore it, attempt to hide it, try harder, or pretend it does not exist. 

Now, I am not suggesting that those of us living with chronic illnesses such as Gastroparesis simply lie down, accept defeat, and stop striving to achieve.  I am not implying that we should give up on our dreams, our goals, our aspirations, or our hopes.  I am not endorsing an approach whereby we stay within our comfortable boundaries and never test the limits.  I do this every day.  I push myself beyond what is sometimes reasonable because I wish to remain independent, unfettered, and feel a sense of “normalcy” in my daily life.  It is good to push, I think – but it also necessary to recognize that your body and your mind can only be stretched so far before this behavior causes genuine harm. 

What I am suggesting is that you are sick, genuinely sick, and you are doing the best you can.  Give yourself some credit!  You are surviving despite your many hardships and challenges; despite the unkind words uttered and foolish beliefs held by those who have not lived a single day in your shoes and have no idea what you contend with; and despite the cruel physical, mental, and emotional toll your illness takes. 

You owe no apologies to anyone.  You are strong – fighters, warriors – and you should be proud.  Refuse to believe the lies that would keep you in the dark pit of despair and hopelessness.  See them for what they are – misguided, untrue, foolish notions that should be summarily dismissed and cast off.  Lose the guilt.  Stand up and speak up for yourselves.  You are valuable and worthy of respect just the way you are – limitations and all.

WHATEVER HAPPENED TO GOOD OLD-FASHIONED OUTRAGE?

** A brief note regarding today's blog: I have encountered many dedicated, compassionate physicians, policymakers, and other players in the healthcare field since being diagnosed with Gastroparesis in February 2014.  There are those who work diligently to improve our very flawed medical system, who are committed to providing excellent medical care, and who support research and other initiatives designed to improve the quality of our treatments and our healthcare system in general.  This post is not directed at those kind souls.  But despite the efforts of those who would better our circumstances, my community remains in crisis. Unfortunately, there exist in the medical field many who do not understand the serious nature of their work and underestimate the damage they inflict on my community.  This negligence must not be allowed to continue.  I speak for those in my community who are (for countless reasons) unable to speak for themselves.  Our voices must be heard! **

Please allow me to share what I witness in my Gastroparesis support groups every single day. A typical post goes something like this:

"I am scared. I am dehydrated and feel like I am going to faint every time I lift my head. The room is spinning.  I have not been able to eat or drink anything for days now.  It has gotten to the point where I cannot even keep down sips of liquids.  I am in so much pain.  I just want the pain to stop, and I want to be able to eat again.  I think I am going to die, but I do not want to go to the ER because they will not do anything to help me. They will just mock me, call me a drug-seeker, and send me home; then, I will have a huge medical bill and I still won’t feel any better."

My group member’s local GI knows little about Gastroparesis – and has, in fact, already given her much misinformation.  She has tried all the medications he has offered but to no avail.  The one antiemetic that seems to help is not covered by her insurance, or it is covered only in small quantities, amounts that do not get her through the long nausea-filled days.  Likewise, she has heard about some new and innovative treatments, but her doctor does not have much information regarding these procedures, and, besides, it is likely her insurance company will consider them “experimental” and refuse coverage of them just as they rejected additional quantities of the medication that would have helped ease her nausea.  In addition, her doctor has denied her pain medication because he does not want to “turn her into an addict.” He assures her it is best to just “learn to live with the pain.”

“She should find a better doctor, one who will treat her properly,” you might interject.  Yes, well, that would be nice, but this member lives in a rural area, and her options are limited.  She has no family or friends to help her travel, so even getting in to see the local doctor is difficult for her.  There is no specialist anywhere near her.  Moreover, if she can somehow find an expert within traveling distance and secure a ride, she must wait for months to see him because he has no openings before then and is not willing to squeeze her in. 

She does not know where to turn.  Meanwhile, her health continues to deteriorate.  She cannot tolerate even liquid forms of nutrition, and her weight drops to dangerous levels.  She becomes weak and malnourished and begins to fear for her life.  She calls her primary care physician who tells her to call her GI.  Her GI says there is “nothing more he can do” for her and advises her to “go to the ER if it is really that bad.”

Some of you will object: “But the ER is not the appropriate place to address this – it is meant for imminent life-threatening crises only – heart attacks and such.”  Yes, perhaps, but, as we have established, this member has not received proper assistance from her doctor and she cannot get in to see the specialist.  Her weight has now dropped below 80 pounds.  (DID THAT REGISTER?  Eighty pounds – and this is an adult, not a child.  Does anyone honestly NOT view this as deadly?)

Out of sheer desperation, she decides to go to the ER.  She must beg her neighbor to take her because she has no transportation and is too ill to drive herself anyway.  She waits for hours to be seen, and once she is called back, she encounters nurses and ER physicians who know little more about her illness than her local GI knew – perhaps not as much.   The one thing they are absolutely certain of, though, is that this wretched individual sitting before them is without a doubt a drug-seeker who has invented her pain so that she can get her latest “fix.”  After all, everyone knows “there is no pain with Gastroparesis.”  They seem relatively unconcerned about her non-stop vomiting and shrinking frame and summarily dismiss her concerns that she will surely die if they do not intervene.  At best, she is given fluids and sent home – no hospital admission and no direction as to how she can obtain long-term help.

Now we have a situation where this member has received no aid from any of the places she has approached – not from her regular doctor, her GI, or the ER.  Perhaps the ER has stabilized her to the point where she will not die tonight, but she will be in crisis yet again in a few short days because her issues have not truly been addressed and resolved.  Furthermore, she has left the hospital feeling shamed and demeaned because she dared to ask for assistance.  She turns now to my support group and begs for help because she knows that it is a waste of time and money to consult her physicians or return to the ER.  She hopes desperately that someone in the group can give her sound advice.  She now knows her GI will tell her to go to the ER, and the ER will turn her away or do nothing to rectify her issues.  And so, she is caught in a vicious cycle and learns rather quickly that it is pointless to seek help from the (supposedly) available resources.   (Oh, and she has just received that massive bill she feared as well.  How will she pay that since she is disabled and cannot work?)  This is passing the buck at its best!  Quite the dilemma for a seriously ill patient who needs immediate attention.

The upshot of these circumstances is that, regardless of who you ultimately hold accountable or believe deserves the blame, my people remain in crisis.  No one wishes to step up, take responsibility, and actually assist these patients.  No one puts their needs first.  It is so easy for everyone involved to simply wash their hands of the whole affair and turn my people away as if their lives mean nothing.  Doctors pass them on to the ER, and the ER hides behinds rules and procedures to justify sending them home to, at best, certain pain and agony and, at worst, death.  Many ER physicians are all too happy to patch my people up for a brief moment and then toss them out the door.

Please, tell me what my community members are supposed to do when facing this scenario.  Where can they go for assistance when their local doctors lack the knowledge (or will) to treat them properly and the ER refuses to offer any long-term solutions?  There are no other options for these people.  This is unacceptable care – plain and simple!  But it is more than that: It is a callous, inhumane attitude on the part of all parties involved.  It is people hiding behind policies to justify unjust actions. 

And so, I say to those of you out there in the medical profession who smugly accuse my community members of faking their symptoms, deny their very real misery, label them drug addicts because they cannot endure one more moment of pain, and turn them away hopeless and dejected... HOW DARE YOU!

I have written calmly and rationally about this situation, but the dark, horrible reality is that every single day my people are slaves to your faulty medical system which denies them basic human compassion and relief.  The truth – and their stories – need to be told.  HOW LONG WILL YOU KEEP US ENSLAVED IN THIS SYSTEM?  HOW MUCH MORE MUST WE ENDURE?  And moreover, where is the empathy, the kind touch, the basic human decency you likely once believed in when you took your medical oath? Why is it so difficult to educate physicians and ER staff about Gastroparesis care and direct them to treat us with gentleness?

These are HUMAN BEINGS... your fellow man.  They have few options, and they are hurting beyond words.  How can you so blithely dismiss them?  They have lost so much – nearly everything in some cases.  Do you not understand that?  They have lost not just their ability to eat, but their friends, their jobs, their wealth, the comfortable and pleasant lives they once knew. YOU are their last hope, and YOU are failing them!

Where is the empathy?  No – where is the OUTRAGE?  My people are suffering and dying while the medical world and our healthcare system turn a blind eye and a deaf ear to us.  How many more deaths are acceptable?  Is there no one willing to help my community? Is there no one willing to intervene to save these people?  My patience is wearing thin, and I grow weary of the excuses.  So, I ask again: Where is the outrage?

DEATH DANCES

Death dances, swirls, surrounds me,

He presents his bittersweet ballet,

Haunts me, taunts me, longs to seduce me,

Lures me closer with his sad serenade.

He burns the candles and dims the lights,

Promises nothing short of the divine,

Romances, entices, whispers sweet nothings,

Ensures me the pleasure is all mine.

His icy-cold fingers brush softly against me,

Almost feel his numbing embrace,

He’s had countless lovers and courted far more,

With his kiss a multitude have been graced.

Entwined together in a Danse Macabre,

I nearly accept the deception,

His words drip softly, but his lips tell lies,

Become aware of my misguided misconceptions.

Our passionate tango begins to unwind,

His embrace is a death grip, heart-stopping,

The room spins around me – deceived, no escape,

Let me go!  To my knees I am falling.

Past lovers do mock me, scoff and deride me,

“Did you believe you were favored or special?”

My paramour delights in my confusion and terror,

My horror brings him laughter and pleasure.

At last the fog clears, break free from his grasp,

Not my lover, but a tempter, a beast,

He distracts me, cajoles me, ensnares me,

But this courtship leads only to grief.

Past partners not cherished nor valued,

Though mesmerized by his slow, sad tune,

Mourn the losses, count the costs, and awaken,

They were betrayed – mere victims of the tomb.

But there’s another, my first love, my true love,

Though scorned, He reaches out His gentle hands,

He offers comfort, solace, and tranquility,

Forgives my failings; He sincerely understands.

His romance is tender and eternal,

Light His burdens and few His demands,

When I allow, He guides and directs me,

And I know that perfect are His plans.

I blow out the candles, but I am not in the dark,

Indeed, in His true radiance I am bathed,

Can still hear the music, but fainter it calls,

Leave the dancefloor – though not completely unscathed.

Death dances, swirls, surrounds me,

He presents his bittersweet ballet,

Haunts me, taunts me, longs to seduce me,

But I take no notice of his sad serenade.