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.

Addressing Gastroparesis-Associated Pain

One of the topics that comes up frequently in the GP support groups is the refusal of some physicians to believe that there is pain associated with Gastroparesis. It is a common occurrence for members to post that their doctor has told them, "There is no pain with Gastroparesis." 

GP-associated pain has been fairly well recognized and documented by motility experts. It is noted as one of the concerns in the Guidelines for the Management of Gastroparesis established by some of the top experts and researchers in the field and shared on the American College of Gastroenterology website (http://gi.org/guideline/management-of-gastroparesis/) and is further discussed by the National Institutes of Health (NIH) and various clinics known for their innovation and excellence in the treatment of GP (https://www.niddk.nih.gov/health-information/digestive-diseases/gastroparesis; http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/symptoms/CON-20023971; https://consultqd.clevelandclinic.org/2016/03/new-program-offers-multidisciplinary-treatment-hope-patients-gastroparesis/). In addition, there are thousands upon thousands of members in our support groups who have been diagnosed with no conditions other than Gastroparesis who regularly post about their daily battle with pain.

Why then, do some physicians continue to espouse this erroneous belief? And beyond this, why do they believe it appropriate to dismiss a patient's pain even if they are "certain" it is not due to Gastroparesis? In other words, if the pain is not GP-related, then what is the true cause, and why are physicians failing to seek answers for its treatment. Whether the pain is due to GP or some underlying or accompanying condition, the pain needs to be addressed.

It is never appropriate to release a patient without acknowledging the concerns for which the patient sought treatment. To accuse patients of "faking" a symptom or of having a hidden motive (i.e. drug habit) for professing pain is to assume the ability of mind-reading. Perhaps a more responsible treatment plan would be to seek the cause of the pain, collaborate with patients to establish goals and methods for reducing their pain, and direct patients to resources for coping with the daily effects of such pain.

This is a mindset that must be altered if Gastroparesis patients are ever to be treated with the proper respect and dignity they so richly deserve. To fail to address our concerns is to condemn us to mockery and endless agony.

CLOSE THE DOOR

Flee from all the voices,

Find a nice, safe, warm place,

Into the inner sanctuary,

Make sure to bar the gate.

Slam the door closed,

And draw all the shades,

Sink deep into my chair,

Close my eyes, accept my fate.

It is peaceful in my sanctum,

Or so it would seem,

Not a tortured soul around,

Though they still haunt my dreams.

No pressure, strain, or pleading,

But this is less than fulfilling,

My mind grows numb, closes,

My soul this is killing.

Focus solely on self,

As I am told it is the goal,

But it feels not quite right,

And this takes a steep toll.

For I still hear the wailing,

Anguished pleas of the dying,

Hands over my ears,

But it will not stop the crying.

At the gate, they beseech me,

“Let me in, meet my needs.”

Someone must help them,

But must it be me?

Hold tight to my old life,

Where all was in order,

Clear goals and bright future,

With no frailties was I bothered.

I long for what I once had,

Soft and pain-free existence,

Want to shut out the madness,

But it seems useless, this resistance.

Closing the door on this calling,

Once felt secure, a good decision,

But the truth crashes down,

Not a haven – but a prison.

Locked myself in tightly,

And thereby sealed my fate,

What once seemed so wise,

Is revealed as a grave mistake.

No one can enter in,

But neither can I escape,

Must loosen these chains,

My cruel destiny reshape.

These people, how they need me,

There is no one else,

No white knight to save them,

Must abandon thoughts of self.

But just outside the door,

There is pain beyond measure.

Can I face it, endure it,

This storm I must weather?

Close the door on my old life

And leave it all behind?

Will it be there should I want it?

Questions race through my mind.

Cracked the door in the past,

Peered into the darkness,

Ventured a few footsteps,

But, oh, the vast hardships!

The path I must take,

Leading out to the masses,

Is fraught with great sacrifice,

Past trials it surpasses.

In the end, it is clear,

Cannot ignore my purpose,

Must pass over the threshold,

Keep my fears below the surface.

This new life, it frightens me,

Must cast-off all I once knew,

It will be filled with ample burden,

But, no doubt, with joy and beauty, too.

My body does fail me,

But my soul, free it flies,

Once I unbar the gate,

Through the door – fear subsides.

My new life awaits me,

Must embrace it, now I’m sure,

My old life leads to death,

So, I close the door.

Close the door on my past,

Leave my old life behind,

No final glances or regrets,

My harrowed soul no longer blind.

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

*Note - I wrote this for my Gastroparesis community/groups and share it here as an explanation of the above writing.  My community means the world to me, and I am grateful for all the blessings I have been given:

I never make New Year's resolutions, but I do generally take a look back at the year and evaluate where I have been and where I want to go. It has been a rough year. We have lost so many to this cruel disease, and, of course, we still have no cure. But I believe we have made much progress. For the first time ever, we have an official national Gastroparesis Awareness Month, and we have engaged in all sorts of efforts designed to spread awareness and information and to care for one another.

In any case, I want to share a personal message with you. I am not comfortable doing this, but I am going to do it nonetheless. I have been blessed by knowing all of you. You all thank me frequently, and you are kind to me beyond measure. You tell me I have done so much for you, but I do not think you understand how much you have done for me. You may not believe this, but I have never been a particularly warm person. I have always cared about people -- but sort of in theory and at a distance, if you know what I mean. As a matter of fact, I have struggled greatly over the years to simply tell my family members and those very close to me that I love them and share hugs and such with them.

I am not sure I will ever get to the point where I can say I am grateful for this illness, but I will say that I have learned that some good can come of it. I hate what this disease has done to my body and all of the things it has taken from me. But I can truly say that I am a happier person today than I was three years ago. This disease is physically devastating, but it has been good for my soul. My sole focus now is on helping others -- mostly through the support groups. It has given me purpose and meaning, and it has given me greater empathy and understanding. It has also allowed me to open up to others in a way that I never would have before. It has taught me that there are others out there who desire to help, and that I sometimes have to be humble enough to let them help. It has taught me greater dependence upon God and has allowed me to focus on what is really important in life. Lastly, it has taught me people can make a difference in the lives of so many others.

When I first started here, I thought I would come online, gather a little information, and then be gone again. But you all have opened my eyes to another existence -- need beyond compare, but compassion beyond compare as well. I have argued with God about this many times. I have told Him in no uncertain terms that I am not the person for this job and that I cannot do it -- and He says to me time and time again, "Oh, but you are and you will do it." I have told God off on numerous occasions as well. I have ranted and raved about how this was pointless, how I am only one person, how we do not have the numbers, or the power, or the money to accomplish anything. He allows me to rant, and then He says something like, "If you are finished now, I believe you have a few Facebook messages to get to, and that petition is not going to sign itself."

So, here I stand... and I am thankful. I am thankful for God's wisdom and patience, for all of you and the kindness you continue to show me, and for the chance to ring in 2017. I wrote the blog below to express some of this struggle (my personal struggle). I do not know if anyone else will find it meaningful, but I share it with you just in case. Love you all very much!

HAPPY NEW YEAR!

BLOOD LUST

No one genuinely sees me,

Not my depths, way deep down

Knows anything of my heartaches,

Of the chains by which I am bound.

Choose not to share my frailties,

What good would baring them do?

Focus on those who are aching,

But I have a beating heart, too.

No matter the amount of effort,

For some, it is never quite enough,

Cannot please the scoffers,

Cannot quench their thirst for blood.

Labor until I’m bone-weary,

But my work is never done,

How dare they judge my motives

Or put words upon my tongue!

False compassion and lies of love,

Will never fall from my lips,

Though some trickle words so sweetly,

With poison they most certainly drip.

Think that they have deceived me,

But my eyes are open, unobscured,

For I will willingly be bled dry,

For the cause of those I love and serve.

True compassion has no limits,

Does not judge, but to all extends,

Holds back its biting and gnashing,

Means do not justify an end.

I answer not to men,

But only to Him above,

He who formed and shaped me,

Who, alone, weighs the depths of my love.

My path is set before me,

And though they may try to distract,

Each footstep is directed,

For me, there’s no turning back.

"The Most Wonderful Time of the Year"... with Gastroparesis?

It’s the “most wonderful time of the year,” we are told in verse, but for those of us living with digestive disorders, it can be the most challenging time of the year.  Despite presumptions of holiday gatherings, stacks of presents beneath lavishly decorated trees, and carolers dressed in finery, spreading good tidings, Christmas is a season filled with physical, emotional, social, and financial hardships for many in our community.  The dark winter days, overflowing with constant reminders of illness-free Christmases gone by, demands and expectations of excellence from ourselves and others, and social and financial pressures, lead to anxiety, depression, loneliness, and heartache for some.

Though we long to connect with family and friends this time of year, our illnesses often prevent us from doing so in the ways we prefer.  Travel, though sometimes necessary, is cumbersome and fatiguing; shopping taxes our energy and gift exchanges stretch our already nearly-snapped budgets; physical symptoms produce anxiety over whether we will be able to make it to family gatherings and holiday parties; and the delectable confections which appear at work, in our homes, and throughout public venues tempt and torment us.

In addition, we are plagued by memories of healthier days past when we engaged in merrymaking and feasted upon sugary goodies until our little hearts were content.  Many in our community find it challenging to cope with the countless demands placed upon them this time of year – mandates to join events in which they once participated; requests to prepare, attend, or host extravagant parties; long distance travel requirements; and anticipation that they will retain a cheerful mood throughout the whole affair.  On the other hand, some desperate souls, those homebound or who have lost friends and loved ones, struggle to find ways to cope with the resulting isolation and loneliness – with the lack of such demands, if you will.  Perhaps they were once included in festivities but have now been forgotten by those who have moved on with their “normal” lives.  Or maybe they choose to hide from the hustle and bustle of the season because they believe they are unable to participate in meaningful ways.  In any case, such circumstances can easily lead to discontent and distress. It is difficult to watch the jolly world turn around you when you are faced with the burdens of chronic illness.

But all hope is not lost.  With a little planning, a bit of compromise, and a fresh, yet realistic outlook, we can perhaps minimize the ill effects of this arduous time and help each other to find new ways to enjoy this holiday season.  I offer the following suggestions for your consideration:

*First and foremost, let go of your expectations of perfection.  Easier said than done, I realize, but you are likely not physically capable of acting in the “ideal” ways you did prior to diagnosis.  Though necessarily different now, holidays can still be enjoyable, even when details do not quite meet your exacting standards.  Find joy in the little things – moments with family, quiet evenings in front of the fire, watching Christmas classics on video, or playing board games with friends while sipping hot beverages.

*Let go of others’ expectations for perfection as well.  You are not obliged to live up to anyone else’s prescribed notions of how this holiday should unfold.  You can hand-pick the events and gatherings you wish to (and feel able to) attend.  You can limit your time at such affairs or cancel at the last minute.  Likewise, you do not have to succumb to the pressure of participating in every gift or card exchange.  It is perfectly polite and acceptable to say, “I am sorry, but I am too ill to make this event,” or “My apologies.  I am afraid I will not be able to exchange gifts this year.  It has been a rough spell for us financially.”

*If you are alone and do not wish to be, consider turning to social media sites, online events, support groups, or telephone calls for companionship.  If you are physically able, think about volunteering at a local long-term care center or children’s home, joining a public tree-lighting or holiday party, or attending local church services, plays, or musicals.  Though this may not rival family gatherings, it might help you feel a bit less lonely and isolated. 

A few more practical, tangible tips:

*Simplify where you can.  You are not required to decorate that 9-foot pine with tinsel, lights, and perfectly-placed ornaments, dangle garland from every banister, mantle, and doorway, or send cards to all those with whom you have ever come into contact.  Buy a small pre-lit and/or pre-decorated tree, gaze at your neighbors’ holiday lights instead of stringing your own, and present close friends and family with “virtual” greeting cards rather than stuffing envelopes.

*Consider online shopping.  This will save you loads of time and energy.  You can easily search websites for the most affordable prices, and in many cases, you can have gifts pre-wrapped and shipped directly to the recipient.  Alternatively, consider gift cards to loved ones’ favorite places.

*Set a budget and refuse to exceed it.  You might have to sacrifice that “ultimate” gift you had your heart set on, but is the added budget strain really worth it?  If you have children and cannot afford presents, contact charities like the Salvation Army, church groups, or clubs/organizations that operate assistance programs.  Thrift stores such as Good Will offer inexpensive merchandise as well, and even homemade goods, crafts, or foods can become meaningful gifts.

*If traveling, budget plenty of extra time for rest stops; bring “safe” foods/nutrition along for the trip; pack extra clothing in case of accidents; and make certain you have ample supplies and doses of medication.  If you will be separated from your luggage, keep your medications with you in their original prescription bottles or containers.  You do not want to risk your medications being lost with your baggage.  Check accommodations ahead of time when possible.  You will want to make sure your needs will be met once you arrive at your destination.

*Rest, rest, rest.  Find quiet places, allow down time, relax, and limit your engagement when necessary.

This Christmas season may not be a replica of pre-diagnosis Christmases past, but it can still hold delight, and you can create memories you and your loved ones will treasure.  Acknowledge your feelings and grieve for times past if need be, but free yourself from the heavy burden of impractical demands and expectations.  Set realistic goals, ignore unreasonable demands, and find joy in the few special moments spent with loved ones or even in the service and company of strangers. 

Happy Holidays!

Feast Your Eyes on a Gastroparesis Holiday

This holiday season, as you prepare and eagerly await your gatherings and feasts, please remember the Gastroparesis community. Far from being a festive season, this can be one of the most challenging times of year for us. The physical, social, emotional, and financial hardships associated with these life-altering diseases and disorders make many of us wish we could hide from the holidays rather than incite us to join in the celebration. And though we are glad our families and friends can savor the wonderful treats associated with the holidays and join in the various festivities, we long for understanding, and we yearn to be included in some fashion.

We want you to know that there are numerous obstacles surrounding the holidays for those of us with digestive disorders.  To begin with, many of us are unable to participate in the usual holiday events and family get-togethers due to the ever-present physical symptoms of our illnesses and the sheer fatigue that accompanies them. We are, quite simply, too sick and tired to make it to the party.  Because we are worn down from battling pain and nausea, and because most of us do not consume nearly enough calories to meet our nutritional needs, we often do not have the energy required to prepare food, purchase and wrap gifts, dress up, ready ourselves, make the trip, and spend long hours socializing at a holiday event.  We cannot afford to use precious energy needed for our survival on these lovely but unessential “extras.”

Travel is likewise difficult because of our fatigue but also because many of us must carry along cumbersome equipment and supplies required to treat our conditions.  We worry that we will forget a necessary item or bring fewer supplies than needed, and we sometimes fear that our symptoms might worsen to the point where we might need immediate access to our medical providers.  We wonder if local hospitals and medical providers will be able to quickly assess our health needs and assist us in an appropriate manner should supplementary care be required. 

In addition, many of us are disabled, unemployed, and/or have high medical expenses and find ourselves financially strapped at this time of the year.  We would love to purchase goods and presents and make long trips to see loved ones, but we find ourselves struggling to pay for our basic medical expenses and cannot afford to spend extra on things above and beyond the essentials for our survival.  We hear your kind offers that we are not obliged to pitch in for the meal or reciprocate gifts, but for many of us, this creates a sense of guilt and makes us feel as if we have not done our part or contributed in a meaningful manner.

Please be aware that, emotionally and mentally, these pitiless diseases take a heavy toll on us at this time of year. Many of us become depressed because we can no longer participate in the holidays in the same manner we did prior to diagnosis.  We find it difficult to cope with the abandonment of old traditions.  We are, in short, not quite our usual cheerful selves.  These feelings may intensify if we are unable to attend the usual celebrations, and our feelings of isolation, the sense of being “ignored,” can become crippling.  Rather than reveling, we often find ourselves mourning the loss of our old lives.

Though the entire holiday season can be quite stressful for us, Thanksgiving is particularly problematic, as it is a holiday that largely centers around the feast itself, and deserves special mention.  Some in our community cannot eat at all and many are severely limited as to what they can consume.  We are flooded with images of sumptuous food that appear on television, on billboards, in social media feeds, and in various public arenas at Thanksgiving time, and yet we are unable to consume even a few bites of these delicacies.  Can you imagine the anguish of watching everyone around you enjoying beautifully crafted homemade meals, lush with every food you dream about every single day, while you sit to the side, unable to taste these treats?  It is painful – physically and emotionally.  We long to join in the normal events, but the temptation to eat that which we cannot is sometimes agonizing and overpowering.  At times, the mere smells of the foods at such events keep us away.  Since nausea is a major concern, the aromas filling your houses are often intolerable to us.  And – though not a pleasant topic – we are concerned that we will not have unfettered access to your restrooms should they be required. We are further horrified at the thought of creating an awkward and embarrassing situation for both ourselves and our hosts.  Such are the joys of our physical symptoms.

We desperately seek to take part in the holiday happenings, but we do not know how to make our loved ones see that we cannot celebrate in the same fashion that we used to or that most of you still do.  Some of us find ways to cope, perhaps by bringing our own food (or other source of nutrition) to your event, by limiting our time – coming late and/or leaving early, by distracting ourselves with alternate activities while the rest of the party-goers dine, or with the help of another such creative tactic; however, some of us cannot bear the effort and sacrifice this requires and choose not to attend. 

Please try to understand that when we pass up invitations or do not "like" your social media posts regarding foods and holiday parties, we are not being unkind, and we do not wish to avoid you.  We still yearn for companionship and inclusion.  We only want to escape the circumstances that make dealing with our conditions more difficult.  Believe it or not, we do not like to see our family and friends uncomfortable.  We are well-aware that we can be an inconvenience and a source of guilt for those who do not know how to help us and who feel bad for partaking in the dinner and festivities while we watch from afar.  We do not wish to see our loved ones enjoy the merriments any less because of our presence.

What we would like, and what our families and friends can offer is, first and foremost, sensitivity to our plight.  We miss our old lives and long for things to be the way they were prior to diagnosis.  We struggle greatly to accept that our lives will never return to the “way things used to be,” and we sometimes get lost in those sad moments.  We are capable of happiness at this time of year, but we might forget that for a brief instant, and it sometimes takes great effort on our part to remind ourselves that we can still have joy in our new post-diagnosis lives.  We fight to find substitute sources of delight and focus on what truly matters.   

In addition to your sensitivity, you can support us by offering alternatives and minor accommodations.  Perhaps you might be willing to oblige us by allowing us to bring our own foods/nutritional supplements without feeling insulted when we “refuse” to taste the culinary creations that it took you “all day” to produce.  Or perhaps you might permit us to come at an earlier/later time or stay only a few minutes so that we miss the dinner portion of the event and do not exhaust our limited energy resources.  We would likely appreciate the chance to rest in a secluded spot without the noise and commotion normally found at holiday gatherings when necessary as well.  We do not wish to insult you.  We know you have gone to great trouble, and we value your company, but “just a few bites” of an unsafe dish or “just a few more minutes” at the party can leave us in agony for days after the event.  We are sure you would not wish this for us. 

And if you are feeling especially compassionate and accommodating, perhaps you might consider holding a completely separate holiday affair, possibly less boisterous, which does not include food in any form – a second event just for us.  Or maybe you would like to leave the hustle and bustle of the holiday party world for a brief spell and have a quiet visit with us in the comfort of our own homes.  We know this can be an inconvenience, but we miss you and would love to see you when we are feeling up to it.

We do not expect nor want you to give up the traditions and events that you have always enjoyed at this time of year.  We ask only that you understand that we often mourn days past and long to have those times back again.  It is an especially difficult time of year for us.  We hope you will consider finding ways of including us (and our post-diagnosis bodies) in the holidays. After all, it is not really about the food.  It is truly family, friends, and good times spent enjoying each other’s company that make the holidays special.  We welcome and cherish those moments. 

Happy Holidays!

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*Please Note: A shorter, slightly altered version of this blog was published on "The Mighty" at https://themighty.com/2016/10/difficulties-of-the-holiday-season-for-people-with-gastroparesis/. This blog will also be available in the Association of Gastrointestinal Motility Disorders (AGMD) quarterly newsletter.  You can find additional information about the AGMD at http://www.agmd-gimotility.org/.*