Saturday, August 27, 2016


On this 27th day of August, we are nearing the end of Gastroparesis Awareness Month, and, in my estimation, much awareness has been spread.  We should be elated about the strides we have made.  After all, August 2016 would appear to be a banner year for our community.  For the first time ever, we have an officially recognized national awareness month.  In addition, governors in 22 states have approved proclamations declaring Gastroparesis awareness weeks or months.  We have a congressional bill (HR 2311) before a subcommittee that would give us much-needed research funding and that has attracted additional cosponsors each congressional session.  Numerous articles and interviews, both local and national, have shed light on our illness, and countless websites have included information about GP in an attempt to help us spread the word.  We are receiving more attention than ever before.

Yet, as I reflect upon the month and upon the current mood in our GP support groups, I see anything but joy.  In fact, I see quite the opposite.  This community is depressed.  Many are feeling defeated – and even guilty.  Why?  Because at the close of this month, we are very much “aware” that, despite any gains that have been made, we still have miles to go. 

August has not brought a cure.

I hear the grumbling in this community: “Awareness Month is almost over.  I didn’t do enough.  I wish I had done more.”  Many of us feel guilt and regret that this illness has kept us from pushing harder for our cause and that we have been unable to host in-person awareness events, garner additional media attention, persuade family members and friends to share articles, memes, photos, and stories, and secure donations for our digestive disorder organizations.  We lament the fact that there has been no “ALS moment” for the GP community, and we mourn the loss of what we perceive to be opportunity “wasted.” 

We are sad, but, moreover, we feel helpless and rejected.  We have been disparaged by family members and friends who have brushed us aside, not bothering to read and share our stories, and who have refused to participate in our awareness campaigns.  We have been cast off by the media, which, despite its vast reach and great power, has rejected our pleas and has refused to engage in a supreme effort to shed light on our condition and reach the legislators, researchers, medical professionals, and others who could make a significant difference in our lives.  We have been dismissed by the politicians and policy makers who have failed to support our congressional bill and who have not pushed to enact measures which would make it less cumbersome for us to get necessary treatments, insurance coverage, and disability funds.  We have been scorned by pharmaceutical companies, insurance companies, and medical professionals who have paid no more attention than usual to our plight and have done nothing to improve our care.

Most of our community members have engaged in a determined effort this month to convince those around us who might truly transform our circumstances to reach out, show compassion, and pull us out of our abyss. We have put all of our energy into this cause.  We believed, for a time, that if we simply worked hard enough and long enough, if we were truly motivated enough, we could achieve all we had set forth to accomplish.  But, at the end of the month, comes the realization: nothing much has changed.  And so, we feel powerless in the face of this beast of a disease that seeks to steal our very lives, though we have fought tooth and nail to change our situation. 

Come the morning of September 1, 2016, we know that, as usual, we will wake up with GP and all of its devastating effects.  We will still be forced to engage in the daily battle against nausea, vomiting, pain, hunger, bloating, and all of the other hardships that accompany our illness.  We will encounter family members and friends who do not understand our limitations and who abandon us because we can no longer participate in activities quite the way we used to.  We will continue to confront medical professionals who believe we are hypochondriacs and drug-seekers, faking our illness for sympathy and attention, and we will watch our bank accounts further diminish and our finances crumble in the face of ever-mounting medical bills. 

This is the harsh reality.  There is no denying it; yet, the truth is more complex than this.  There is a downside to awareness month, a somewhat unexpected sense of disillusionment, to be sure.  Perhaps we cannot completely avoid or ignore the “letdown” feeling that has reared its ugly head, but we can see our smaller-than-hoped-for gains for what they are: progress.  In the final analysis, this does not have to be an “all or nothing” scenario.  No, we have not brought our disease to an end, and we have not achieved universal awareness.  We do not have a cure, and we will not wake up tomorrow to magically symptom-free days.  But we are altering our landscape.  Little by little, we are changing how our illness is seen by those around us.  Our stories are gradually having an impact.  Not all have been moved to compassion – but some have softened.  Not all have been persuaded to help – but a few have responded to the call.

There has been no revolution, no overhaul of the system that persists in permitting our agony, but we must not demean the advances we have made.  Ultimately, we cannot regulate the behavior of others; we can merely govern our own actions.  Likewise, we cannot control all outcomes, but we can help shape them with our continued engagement.  Furthermore, our awareness campaign does not have to end simply because August has.  Perhaps we cannot maintain the same grueling pace, but we can take tiny steps forward.  Piece by piece, we can chip away at the obstacles that stand in the way of our cure.  We cannot do it alone, but we can do it together.  Progress may be slower than we wish, but we will see our dreams realized one day.  We must continue this fight, rise up as many times as necessary to effect change, because, in the end, what other choice do we really have? 

We must not remain discouraged.  We have not accomplished every goal, but we have made small strides toward them – and that is surely preferable to standing motionless.  As we approach September, we must determine to convert the awareness we have gained into concrete actions.  Our battle has not been lost, and we must resolve to pursue all possible measures that might win us the attention and help we so desperately need. 

We must be proud of all we have achieved and must never be convinced that our actions are in vain.  We matter, our struggles matter, and our efforts matter.  We are NOT failures because we do not yet have a cure.  We are simply facing difficult circumstances and battling a disease that is a formidable opponent.  But make no mistake, we are motivated, strong, and persistent.  We cannot lose sight of that in the midst of our current, temporary despair.  September is a new month – one full of hope.

1 comment:

  1. As always, my precious friend and fellow advocate, you have risen to the occasion and have captured our words with great accuracy. We shall continue to persevere, we are changing the landscape of how our illness is seen by all. Thank you for placing pen to paper and saying what we all feel. Well written. Highest respect and regards. I truly do love and appreciate you, sweet Melissa.