Preconceived Notions Surrounding Social Media Groups

Far too many people have preconceived notions and a basic misunderstanding of the nature of Facebook groups and of our interactions within them. In short, our groups too often get a "bad rap" that is neither deserved nor true.

Our Gastroparesis support and advocacy groups are not simply places where we "vent," although we do vent. Many of our members have no other place to do so, as their families and friends dismiss and refuse to believe their struggle. The groups, then, are the one place where members feel understood and accepted. And far from being mere "gripe sessions," such posts might better be viewed as self-care and self-help, as they attempt to put into words the feelings that weigh heavy on the hearts of our members, who seek acknowledgment, compassion, and, sometimes, advice for moving forward.

The groups are not merely boards for "bashing" physicians, either, although that does occur. It can be difficult to find doctors who are both knowledgeable of the life-altering effects of GP and who care about the overall well-being of their patients. In addition, sharing bad experiences often generates discussions about how to better communicate with physicians and how to advocate for assistance, affords members the opportunity to suggest possible remedies to obstacles and problematic interactions, and flashes a warning sign about healthcare providers who consistently under-serve their patients.

Further, the groups are not hosts of misinformation, although we do combat that. By permitting members to ask questions, wonder aloud, and speak freely (or, at least, as freely as Facebook permits), we offer rational explanations, discuss research and information from credible sources, and share personal experiences and perspectives. We offer and flesh out what is accurate and inaccurate, what is helpful and harmful, and what is perhaps worth pursuing or dismissing.

And, finally, the groups are not "negative" pits of despair, although we see many who have been dismissed, mistreated, beaten down, and lack hope. We combat this by offering listening ears, helping hands, and understanding hearts. We would rather our members be outspoken about their worries, fears, and sense of hopelessness than hide their pain and suffer in silence. If we do not know, then we cannot help. We hear the cries that others have ignored and give voice to the pain so that "healing" can begin. But we also share uplifting stories, small and large "successes," and moments of overcoming. We hear of weddings, births, graduations, successful treatments, good days, and reconnections with families and friends. We express both despair and hope, as is the case with nearly all humans. We laugh, cry, commiserate, pray, and wish well.

In short, our groups are sources of physical, emotional, mental, social, and spiritual support. They are the center of information-sharing and advocacy efforts. They are our best attempt at getting out accurate information regarding the causes, effects, and available treatments and resources for our illness. They are a one-stop shop where we treat the person as a whole and not simply as a diagnosis. They are self-help and education communities. They are the light at the end of a sometimes very dark tunnel and a source of encouragement and hope for those who the medical system and families and friends have failed. They are "home" to both those who are isolated and lack basic knowledge and support and to those who wish to offer such knowledge and support.

And, so, I challenge and encourage healthcare professionals, researchers, legislators, the media, pharmaceutical and insurance companies, loved ones, and the general public to lose their preconceived notions and open their eyes to the benefits of social media-based support communities. We are so much more than you have imagined.

GASTROPARESIS AWARENESS MONTH 2022

Every year, Gastroparesis: Fighting for Change supports Gastroparesis awareness by engaging in a themed campaign designed to highlight the issues, needs, and goals of our community. This year’s theme is #GPWontSilenceMe.

As part of this effort, I would like to collect photos, quotes, experiences, and/or stories demonstrating what you would like doctors, researchers, legislators, policymakers, the media, and family/friends to know about living with GP and/or discussing the changes we, as a community, need to see.

This is your chance to speak! The goal is to help the outside world understand that this is more than a tummy ache. They need to see the true effects of GP on your life — physical, mental, social, financial, and spiritual — and they need to know what measures and actions you believe would help.

To submit, please share your entries at https://curegp.org/gastroparesis-awareness-month-2022/

Collection will be ongoing, so there is no set deadline… but the earlier, the better, as I will need to prepare graphics and other materials by August 1, 2022.

Thank you so much for your help!

Humility

I wrestle with how to express myself in a way that I am understood without sounding as if I am simply whining or making excuses. It should not be this difficult, and the fact that it is tells me we are failing to reach people in ways that touch their hearts.

To the healthy people out there, please imagine with me, if you will…

You are unable to eat more than 500-750 calories per day on a good day and often go completely without nutrition for several days in a row. You are fatigued, nauseous, and in pain. Your sleep patterns are also often disturbed. Your ability to think, reason, and make good decisions are all compromised by this deprivation. You are at your wit’s end, hanging by a thread, barely keeping your head above water.

Yet, you must continue on with your regular activities. You must work, run errands, do household chores, and care for your children and pets. You must make it to meetings, significant events, and social affairs as well. You must seamlessly adjust to any crises or changes that arise, without voicing objection or hinting at hesitation. You must remain polite, professional, and poised at all times, despite your world crumbling around you.

You feel as if you are on the verge of collapse, but the world demands you go forward, never-ceasing, never missing a beat – and that you do so with a smile on your face and a pep in your step. You cannot show weakness, make errors, or fall short of goals… for if you do, the vultures await.

They hover near, seeking any opportunity to scold, berate, convince you that you are “lesser,” worthless. Their words are harsh and their judgment harsher. They await your failure with bated breath, ready to pounce upon your slightest mistake. They offer no grace, no mercy, no forgiveness, and no empathy. They are oblivious to your plight, to your struggles, because these do not match their own experiences. They are unwilling to look beyond their own interests and needs and consider the burdens of others. They are high and mighty in their ivory towers, blessed with health, opportunity, and good fortune. They are perfection in their own eyes. And you? You are a mere mortal, a sinner, outmatched.

I ask you with all the passion and humility I can muster, the next time you seek to judge me – or anyone in my community – pause and consider my circumstances. Try for a second to put yourself in my shoes, and when I misstep, do me the courtesy of showing me the benefit of the doubt. Exercise a bit of compassion, soften your glaring glance, and hold your lashing tongue because you who are so fortunate have little idea what I face. I fail, and I fail often, but I am trying my best, and you know not the effort I expend to simply survive the day, let alone stay on top of the game.