A PATIENT (NOT SO SECRETLY) RESPONDS

I am disturbed by Dr. Brian C. Joondeph’s article, “8 Things Doctors Secretly Want to Tell Their Patients” (http://www.kevinmd.com/blog/2017/04/8-things-doctors-want-secretly-want-tell-patients.html). While I understand the good doctor/author wishes to share the physician perspective on the topics in question, it strikes me that this piece exudes a tone of near resentment toward patients – toward the “patient as center” philosophy.  At the very least, it does not scream “patient as partner” to me, nor does it seek to reconcile patient and physician.  It simply points out perceived patient misdeeds and makes no attempt to reflect upon the possible reasons behind patient “shortcomings.”

I understand the challenges physicians face, and it is not that I find fault with those who wish to discuss the physician condition under our current healthcare system; nor do I wish for my physicians to suffer.  I would like for my physicians to be happy, fulfilled, and well-compensated for the care they provide.  I have had mixed experiences with doctors, but most I have encountered have been dedicated professionals who have provided skilled care and have treated me with dignity and respect.  I sympathize with physicians who must tolerate long hours, overcrowded schedules, under-compensation, and less-than-reasonable patients.  But, out of necessity, if nothing else, healthcare must be centered on the patient, as it exists to serve his needs.  And in any case, we should not be at war, intentionally antagonizing each other and manufacturing tension and drama.  Should there not be attempts at mutual understanding?

To this end, let’s begin with the physician’s points, and address them one by one from the patient’s perspective… 

1. “I’m worried about health care reform, too.” – Though you state that you appreciate the challenges patients face under the ACA (or any other healthcare program), I am not certain you actually do.  Your worries center around your financial concerns and the possible closure of your practice, but mine revolve around my health, my very life.  My finances are already in ruin because I am too ill to work, and my medical bills continue to mount.  I am barely getting by as it is, and if I have no (or very limited) access to affordable care, I will die.  You will simply lose your business.

2. “If you’ll be late or need to cancel your appointment, please let me know.” – This seems reasonable, and I will do my best; however, I expect the same courtesy in return.   If you are running late or will be rushing through my appointment in an attempt to “make up time,” please let me know so that I have the option of canceling.  My time is valuable, too, and I have likely gone through a lot of trouble to get to your office in my sick and weakened state.  Lengthy waiting room times, when one is vomiting, feverish, and one the verge of collapse, do not help the situation.  And please think twice about canceling my appointment at the last possible moment.  I do not appreciate prepping for a colonoscopy only to be told a couple of hours prior to the procedure that the doctor is “running behind” so we simply must reschedule.  Please understand, also, that, like you, I am not always able to give 24-hour notice of cancellation.  My life is chaotic.  I may awaken to a sick child, a car which decides not to run today, or any other number of unexpected and unplanned catastrophes.  Life is not always perfectly predictable.  Oh, and I receive no compensation when you cancel.

3. “You really need to… [fill in the blank]” – Yes, I am probably already well-aware that I need to… [X].  Now, I realize that you feel it is medically appropriate to tell me what is already very clear to me, but it is not necessary to do so in a condescending, hateful manner.  Often, it is the tone which is the issue and not the statement itself which I find offensive.  Believe me, there is a difference in saying, “You might really consider dropping a few pounds” and “You are fat!”  And in any case, your “edicts” are, in truth, merely recommendations to me, and I may very well see things differently based upon which quality of life aspects I wish to emphasize and which goals upon which I choose to focus.  You do not have the right to make unilateral decisions for me.  And one final point: not all of my health issues can be attributed to unhealthy lifestyle choices.  Sometimes, through no fault of their own, even when they have done everything right, people get sick.  They get infections, viruses, and diseases which were not caused by living a sedentary lifestyle or eating too much junk food. 

4. “Think before you call us.” – Well, the next time I am vomiting non-stop and scared out of my wits by the pain, I will try to consider how this might disrupt your evening.  That middle of the night call you hate receiving?  Got news for you: I hate making it, and if I were taken more seriously by ERs and physicians alike, I likely would not be taking this approach.  (Please see “Whatever Happened to Good Old-Fashioned Outrage” at http://melissarvh.blogspot.com/2017/02/whatever-happened-to-good-old-fashioned.html.)  And while we are at it, I would greatly appreciate it if you would think TO call me.  I deserve timely notice regarding lab results over which I have been wringing my hands with worry.  A follow-up call to check my status after a major procedure and reminder calls regarding upcoming appointments would be nice as well.

5. “Be polite to my staff.” – Politeness should always be the goal, of course, and that should go both ways.  Please also inform your staff not to take their frustrations out on ME.  Yes, that happens!  Eye contact, smiles, a simple “please” and “thank you” and an apology for long wait times would be most appreciated.  Please remind them I am a unique individual and not a number, and that though they might have asked the same set of questions to a hundred other patients, they have not asked those questions to me.  So, please forgive me and exercise just an ounce of patience should I ask for clarification or elaboration.

6. “I can’t always run on time.” – Nor can your patients.  Please do not assume I am not concerned about getting to appointments.  Many times, I have waited weeks, even months, to get in to see you.  I do not take that lightly.  So, if I am a few minutes late, it is not because I set out to ruin your schedule; rather, I was likely interrupted and delayed by one of life’s unexpected situations.

7. “Saying ‘thank you’ goes a long way.” – As mentioned above, it most certainly does, as does your kindness toward patients.  We all wish to feel appreciated.  Without me, you would not have a job, so please address me as a valued individual client.  I would love to hear how grateful you are for your loyal patients, like me.

8. “I’m only human.” – As are your patients.  As a matter of fact, we are sick humans.  I cannot always be at the “top of my game” when I do not feel well.   I am weak and struggling, sometimes in a fog, and, try as I might, I do not always put my “best foot forward.”  Neither do I welcome your criticism and judgment for my transgressions.  I am not apathetic or generally unkind; you see me at my worst.  I am doing the best I can, given the circumstances.  My apologies for the times I am less than perfect regarding the social graces.

In addition to the responses above, I beg you to please consider the following subjects we, as patients, would (maybe not so) secretly like our physicians to know as well:

1. I am frightened and unsure. – I have just been diagnosed with a disease or condition about which I know nothing – not the cause, the possible treatments, or my prognosis.  I have no idea how this will alter my life, and I am terrified to hear the answer.  In fact, I know so little about my condition I can barely formulate basic questions for you.  I fear you will mock me or that you will not believe me.  I fear you will not take my concerns seriously or will not focus on the aspects of my care which are important to me.  I fear my condition will worsen.  I fear I will die.

2. I am overwhelmed physically and emotionally. – In addition to my fears about our upcoming visit, I am coping with the very real daily negative physical effects of my illness and the stress related to it.  How can I cope with these symptoms for the rest of my life?  How will I work like this?  How will we pay our bills?  Will I be a burden to my family?  Will I survive to see my child grow up?  These matters weigh heavily on my mind, and I am drowning in worry.   

3. I am not stupid. – It may take some time for me to adjust and learn, but I am perfectly capable of understanding complex material and processes when I am comfortable with the language and terms and am given proper information.  I can make informed choices and wish to be presented with all my options as well as the potential risks and benefits.  I welcome your educated recommendations, but it is ultimately my life, and these are my choices.  Furthermore, rather than admonishing me to “stay off the Internet,” you should be encouraging me to do additional research regarding my condition and its possible treatments.  I need to understand what I am up against, and I cannot always trust that my physicians have the latest or best data about my condition, especially if it is rare.  Please welcome my suggestions and engage me in reasonable discussion as to whether the questions I raise are sensible concerns and the treatments I present are viable options.

4. I can handle the truth. – Please do not hide information from me.  I want and expect the whole truth about my condition.  Yes, I might be upset, but once I have a chance to process the information and evaluate my options, I will be just fine.  You do not need to hint around, speak with my family as if I am not in the room, or downplay the nature of my condition.  In addition, please do not attempt to define for me the seriousness of my illness; I will decide that all on my own.  That is not up to you to determine because your life is not the one impacted by this illness.

5. I wish to be believed and treated with respect. – I should not need to “prove” I am experiencing the symptoms I report to you.  If I am in your office, it is a pretty safe bet that I am, indeed, struggling.  When you smirk, seem uninterested, or dismiss my symptoms without further evaluation or discussion, it is difficult for me to believe I am being heard.  Further, please do not assume that because only a small percentage of the population is afflicted with a certain condition about which I am concerned, I could not be in that small percentage.  My fears may be justified.  And, finally, please do not tell me, “I wouldn’t worry about [X].”  You wouldn’t, but I do.  Explain to me why you do not believe I need further examination or evaluation. 

6. You are not seeing me at my best. – You are most likely seeing me at my worst.  I am weak and ill, and your personal situation and feelings are not my chief focus.  I am normally a very nice person, but these are difficult times.  Yes, you deserve to be treated well, and I should be polite under all circumstances, but I sometimes neglect the social graces when I am on the verge of a breakdown and in the middle of a health crisis.  Forgive me my failings and please do not reciprocate.

7. I don’t want to be here. – I am not inventing symptoms because I seek attention or have an unmet psychological need.  I am not an addict seeking drugs for a “fix.” I am not lonely or in need of your company.  I do not wish to waste your time or my money.  I am in the midst of a genuine medical predicament and could use your help rather than your accusations and scorn. 

With a little bit of effort and adjustment in perspective by both parties, many of these issues could be resolved.  Physicians and patients should not be at war.  We share many goals, and we are trapped in the same faulty healthcare system.  Can we not find a way to understand each other? 

THE ROAD TO SUCCESS: AN ADVOCACY STORY

A post by Ms. Marsha Wright (www.iLoveMyFans.io) reminded me of this quote by Mr. Robert Collier, a successful self-help author: "Success is the sum of small efforts, repeated day in and day out."

I believe this is true in terms of advocacy. Some seek to be heroes, to lead some sort of one-man charge in the advocacy world; some seek celebrity endorsements as a solution to all our woes; some search for that one big campaign that will lead us all out of the darkness. In contrast, others refrain from participating in advocacy efforts because they feel their efforts are somehow less important or significant that what they view as the "major" players.

In truth, though advances in awareness are, at times, made through giant leaps, most progress is made gradually, incrementally, over time. And it is not those who seek self-glorification, fame, praise, or positions of leadership who lead. It is those in the trenches, fighting small battles and sharing small victories who usher in real change. It is not the generals who achieve victory; it is a joint effort by all involved.

Awareness is about our illness -- about finding solutions to the struggles we face. It is not about any one individual or campaign. It is larger than you and me, more significant than any group or campaign, and is led by the sum of us. Everyone here is equally important. YOUR success is MY success, and vice-versa. It cannot be any other way if we are to survive this cruel illness. Celebrate the successes of others -- for they are ultimately your successes as well!

CHAINED

Chained to the beast,

Who would rob me of my soul,

Haunted by this nightmare,

Who can make me whole?

Sentenced to this fate,

But I have done no wrong,

My captor, my companion,

He appears to be so strong.

Trapped in this dungeon,

While the monster rages on,

He will surely slay me,

When his taunting’s finally done.

How can I defeat him?

Release my daunted soul?

Who is there to rescue me,

To unbolt the prison door?

I fear my days are numbered,

His looks have grown so cold,

I’d like to ask his reasons,

But I am not this bold.

I know not why he chose me,

Why this burden I must bear,

But there is little question,

I must soon escape his lair.

My body falls to ruin,

But that’s of little concern,

The greater battle blazes,

Reaches the point of no return.

The beast inflicts great sorrow,

His misdeeds do take their toll,

But though he ravages the body,

He must not reach my soul.

For he may hold the power,

To bedevil, inflict great pain,

But he must not persuade me,

That my life is lived in vain.

Shackled to my tormentor,

But inadequate is his reign,

My soul is mine alone,

And my choice it does remain.

Confined by the walls which surround me,

But my spirit can surely sing,

No cell can tether my soul,

Nor the hope to which I cling.

Chained to the wretched demon,

Who seeks only to devour,

But he knows not the day,

Nor the minute, nor the hour.

His power is but an illusion,

My fate transcends his command,

The key is beyond his reach,

But within the grasp of my hand.

My oppressor, my constant companion,

Unleashes his bitter fury,

He rails and rages against me,

But my fear, at last, is buried.

Though bound to the beast within me,

My spirit is unrestrained, free to soar,

This body is enslaved in his Hell,

But my fearless soul has been made whole.

BEYOND THE GARDEN GATE

Saved from Flickr.com

Just this side of the garden gate,

Much sadness to behold,

Left to contemplate my fate,

A plot where hope grows cold.

Jealous minds and hardened hearts,

The weeds that choke and bind,

Haughty and self-righteous tones,

Monstrous trees which block the light.

Souls are blackened by schemes and lies,

Which nurture fruitless and barren soil,

Where hate and envy flourish unchained,

Sow discord, hatch egregious turmoil.

The steely glances and belittling glares,

Take root in once tender sprouts,

Turn the beauty that might otherwise exist,

To misery, heartache, and doubt.

Arrogance, egoism, and blatant conceit,

Like shrubbery and underbrush abound,

Dream of finding a soft patch, my Eden,

But to this graveyard, I am desperately bound.

Towering walls and unyielding stones,

Shield the garden virtuous and true,

Defy my futile, half-hearted attempts,

To escape this pitch-black, cold tomb.

Weak I grow and fading fast,

The sun’s bright radiance escapes me,

But in the rubbish which mires my feet,

A vine appears to teach me.

Scales the walls, and under the gate,

It creeps, winds into my darkness,

Hearty and hale despite the night,

Grows nearer – “Come,” it harkens.

Follow its trail from my bitter dead plot,

Face to face with the glorious garden gate,

The vine, it beckons, “You hold the key,”

Swing the door – a path narrow and straight.

Beyond the gate, brimming with brightness,

Vibrant colors, lush growth do astound,

Fresh welcomes, open arms, joyous hearts,

Lively blooms which are everywhere found.

Approval peeks from the cracks in the stones,

Encouragement and praise line the walkways,

Gentleness and hope scatter the grounds,

Their flowers form grand, bold bouquets.

No immense, looming trees to block out the sun,

No weeds strangle the souls of the living,

No scornful judgments which stunt their growth,

Only mercy and tender thanksgiving.

Just outside the gate, bleak and foreboding,

The world turns so withered and dead,

But in the garden, radiant and blossoming,
Souls take flight; they are delivered from dread.

CHOOSE TO RISE

The mood in my Gastroparesis support groups is somber, to say the least. I am reading quite a few posts from people trying to find a way to move on from their "past" lives -- the ones they lived prior to diagnosis. This is a difficult step. It requires much soul-searching and self-evaluation. I often find myself longing for that former life, the one that seems now as if it existed in another world, but I cannot go back, and I think my mind sometimes paints those days just a little rosier than they perhaps were. In any case, I struggle every day to find my place in this new post-diagnosis world, as do nearly all the members of my community. This is not the life I would have chosen for myself or for any of them, but it is the hand we have been dealt, and we search to find the positives in this dark, cruel new reality where our very existence is threatened. There is still good in this life, but it takes a different form, and, in the darkness, it is a little more difficult to see sometimes. But there is light, and there is hope, and if you continue to seek it, you will find it. 

TIME TO GO?

**Note: Today's blog is a post on my Facebook wall.  I include it here because I fear it will not be available to my community members (or me) after it is actually posted, and I wish for my group members to be able to see my final plea.**

My salute to the Facebook Nazis this morning – Day 6 of my punishment under an unjust, arbitrary dictatorship. Generally, if I wish for people to follow the rules, I let them know what the rules are. Punishment for neglecting to obey regulations and stay below limits which are not clearly spelled out is neither effective nor fair. It serves as no sort of deterrent since I am unable to discern which specific actions led to my imprisonment.

I have tried my best to obey the guidelines and edicts of this format, but for the life of me, I cannot read the minds of the Facebook "powers that be." So, I find myself unable to post in my own Gastroparesis support and advocacy groups – some of which I created and some in which I merely administrate. Why? I do not know. I uploaded a file to several of my groups, and my best guess is that this somehow triggered automatic warnings. I do not understand how uploading a file in my own groups, where people join and remain at their pleasure, with no requirement they stay if they find it displeasing, can be an issue for Facebook.

I have attempted to contact Facebook in regard to this in every way I know to be possible, but I am met with silence, or worse yet, form replies that offer no guidance or assistance. I will likely never receive an explanation as to why I have been restricted and will surely receive no notice of how long this punishment will last. I will be offered no grace, no reprieve, and no pardon for my clearly serious crimes. I am at the mercy of a not-so-benevolent tyrant.

Facebook owes some serious consideration to my appeal, as I likely represent the views of countless others.  Furthermore, Facebook needs to take a good, hard look at how it views its non-paying clients who, though exposed to endless advertising, clearly have no rights and no say over how they are governed.  We are potential customers for Facebook’s advertisers, who bring many of our friends to this forum and create a market for their paying clients.  But we are also human beings worthy of respectful and fair treatment.  I am fairly certain there is technology available that would allow Facebook to more perfectly distinguish between “spammers” and “bots” and genuine human beings.  If that is the main concern, I have repeatedly attempted to allay fears.  I have used every means available to me to try to reach those in power and establish just that – that I am indeed a human – but my appeals are ignored.

I have been a Facebook member for nearly 10 years, and I have served in the groups for about the last three.  I have tolerated this ill-treatment for quite a long time because I love my friends here, and I am quite dedicated to my community and my groups – but there are limits to what I will allow myself to endure. I realize that by posting this, I risk having my account permanently disabled, and I regret that this may be the ultimate outcome. I hope Facebook does not choose this course of action. I do not want to leave you all, but I cannot function under these circumstances. It is stressful and frustrating – and, in the end, I cannot be of any use or value to you when I cannot post even the most basic information.

My purpose in life for the last three years has been to do everything I can – as much as I can – to advocate and spread awareness for our Gastroparesis community so that we may be heard and recognized, and it has been my most treasured delight to serve and assist all of you coping with the devastating physical, emotional, mental, and social aspects of this cruel illness. It has been my fondest joy to share in your daily life, both the struggles and the small victories, and to, in turn, share the most private parts of my life with you. I love you all, and that will not change.  I do not know how to thank you enough for the kindness, friendship, and support you have shown me.  You have truly changed my life, and for that, I owe a debt I can never, ever repay.

Should my account disappear, please know that I did not exit willingly, and I have not abandoned you.  I will continue to work on our behalf outside of Facebook should it no longer be an option. I have a life and viable alternatives, and this may force my hand to pursue these. Should this occur, Ms. Emily Randolph Scherer, Ms. Cheryl Lynn Raudebaugh, and Ms. Freda Sullivan will continue to serve you in our main and sister groups, and Ms. Trisha High Bundy and Ms. Deb Shrader-Trotter will maintain operations in our Fighting for Change groups.

You have my deepest and most sincere apologies for what now may well occur.  Please know I do not wish to leave, but I see it as almost a foregone conclusion at this point. This latest ban might not be permanent. I do not know; perhaps it will be lifted. But even so, how long before I am in this predicament yet again? It is an intolerable situation – and, unfortunately, it does little good to voice my objections.  I am ineffective, unproductive, and useless to you under these circumstances, and I fear I cannot alter my behavior enough to meet Facebook's enigmatic requirements.

Again, I have no plans to willingly depart, but I believe you deserve a forewarning about what likely lies on the horizon. I must look myself in the mirror each morning and live with the choices I make. I am not a person who willingly tolerates mistreatment, and I will champion what I believe is right every time, regardless of the consequences. I speak out, stand up for myself – always have – and if that means my account is disabled, then so be it.  I can hardly bear the thought of that, but I will not stand by and pretend this is reasonable.

*********************************************************

Website: www.curegp.com

Twitter: @MelissaRVH

Google+: plus.google.com/u/0/+MelissaAdamsVanHouten

Blog: http://melissarvh.blogspot.com/

Pinterest: www.pinterest.com/mrvh0530/

Linked In: www.linkedin.com/in/melissa-vanhouten-266b7b3a 

E-Mail: gpfightingforchange@gmail.com

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.